Loving, Losing, and Living

Understanding Betsy: A Story

2011-10-02T23:15:00.000-07:00

I wrote Understanding Betsy about twenty years ago. In 2007, it received Honorable Mention in an online short story contest.

It's about mothers and daughters, fathers and daughters, and mothers and fathers. I hope it will speak to you.

Going with the Flow on the River Jordan

2011-08-09T01:15:00.000-07:00

Last week Daniel and I took a three-night mini-vacation in the northern Galilee. The August heat being what it is in the Holy Land, we concentrated our daytime activities around water: On the way up we stopped to swim in the Kinneret (Sea of Galilee); another day we sat first under a waterfall and, later, in a bubbling natural spring surrounded by fig trees.

Best, for me, was when we spent about an hour and a half kayaking down the Jordan. Besides being extremely fun, our downstream ride reinforced one of life’s most important lessons: Many of our most intense experiences are kindest to us when we let go and let them take us where they will.

In the place we started, very near the Lebanon border, the Jordan is quite lively even in the summer, many months after the last rains. The water splashes its way swiftly down over rocks and, at one point, a mini-waterfall, tossing and literally turning any object it’s carrying along. Daniel and I had our hands full, paddling and trying to keep the kayak facing forward.

I know Daniel is smiling here and I’m not, but my grimace doesn’t really mean anything other than the sun in my eyes – I really was having a great time. But there’s no mistaking the tension in my hands and arms as I grip the paddle (yes, I know, in the wrong place), doing my best to steer.

Even when the water calmed down, it was all we could do to keep our kayak straight and more or less centered. In fact, it was a losing battle. The water continually brought us to one riverbank, then the other, then back again. Every time we bumped into a rock, a tree trunk, or another kayak – or simply when the current felt like playing with us – our vessel spun around and sent us on our way facing backward – or sideways! – and we’d scramble once again to straighten ourselves.

After about a quarter of an hour of constant effort, I had an epiphany. I turned to Daniel and said, “Why don’t we just see what happens if we stop paddling?” He immediately agreed – and the trip took on a completely new quality.

We lay back, put our feet up, and surrendered to the River Jordan:

Sunlight sparkling on water below and on trees above, alternating with rippling shadow.

Cold splashes on our sun-warmed skin.

Water rushing, treetops whispering, birds conversing, children laughing.

A black-and-white-striped kingfisher darting out and hovering very close to us for a few seconds before disappearing back into the thick foliage.

A buoyancy, a rocking, gentle to the point where it seemed I might fall asleep when the water slowed down, and vigorous enough to get my blood flowing as exuberantly as the river itself when it sped up.

Letting my mind drift here and there, in and out of the physical world.

Truly knowing that there was nowhere I needed to be right then except where I was, in that place, in that moment.

Best of all, time stretched. Doing nothing to actively move ourselves forward, we spent as long on the river as its own pace would allow, which – inevitably – felt much too short.

The Jordan is not deep, and it’s far from wide. But it does offer milk and honey – though not “on the other side,” as a place to be attained, a goal to be reached. The river’s sweetness, for me at least, is in its process – its essence, its very flow.

To be embraced, borne, rocked, and gently taught by the River Jordan – now, that is a true privilege.

Chocolate-Flavored Resilience

2011-07-31T06:17:00.000-07:00

What has chocolate got to do with resilience? (You may ask.) I invite you to read on, and see if you agree with my take on this crucial issue.

Chocolate is a wonderful example of the tension that all of us in the modern Western world live with every day – that between pleasure and responsibility. When it comes to chocolate, the “pleasure” part of this dialectic is obvious – everyone (well, almost everyone) loves chocolate. Even better: It’s been discovered that chocolate loves us back, or at least pretends to love us by containing various substances that cause our bodies to release chemicals that make us feel happy and loved.

The “responsibility” side of this tension is not immediately obvious, but it’s very real. It’s composed, really, of two kinds of obligations: to ourselves and our families, on the one hand, and to society on the other. On the personal plane, it’s easy to abuse chocolate as one might abuse any substance. For one thing, we might substitute chocolate for “real” food, thus avoiding our duty to keep ourselves and our children healthy by eating and serving nutritious meals. It’s also possible to use chocolate as an easy way of keeping children quiet – much like plunking them down in front of the television – or of getting them to do what we want, thus avoiding some of our educational obligations toward them.

On the societal level, chocolate is often based on “plantation economies” that exploit, abuse, or even enslave their workers. In addition, some of the larger cocoa plantations were carved out of rain forests, thus contributing to the destruction of ecosystems that are vital to their countries’ – and indeed, the world’s – environmental health, perhaps even survival. Finally, in a hungry world, the land, water and financial resources presently used to make cocoa – a plant without nutritional value – might be better devoted to raising that nourishing food which, if we were really good, we’d be eating instead.

Put this way, it would seem pretty clear that we should act in accordance with personal and social responsibility, and shun what has – despite or perhaps because of its sinful qualities – become a kind of icon of Western culture. The Protestant ethic (which, Jewish as I am, I’ve absorbed together with everyone else in the West) would pretty much unconditionally seem to demand no less.

But I wonder if the very opposition of “pleasure versus duty” is as simple as that. We need to nourish not only our bodies, but our souls as well. An emotionally balanced person knows how to enjoy herself. Overly duty-oriented people tend to be rather grim, and can make their own lives miserable – as well as the lives of everyone around them. Moreover, people forced (whether by others or by their own conscience) to spend all their time tending to their responsibilities tend to get exhausted, thus rendering themselves far less efficient. Injecting enjoyment into our lives can give us the strength, and the good humor, to fulfill our obligations with a smile. If we spread the sunshine, others will also enjoy the lightness of heart to do what they need to do – and to pass the sunshine on.

So pleasure greases the world’s wheels, so to speak. Freud, of course, knew this well, as did the composer(s) of the well-known Jewish folktale in which God temporarily suspended the Yetzer HaRa (the “Evil Inclination,” including our most basic drive to pleasure), which caused life itself to stop.

To take the argument further, recharging our batteries regularly with pleasurable “fuel” can strengthen us not only to do what we need to in our personal lives, but to go beyond the call of immediate duty and work for the greater good, for example by volunteering for organizations working for social justice, or for sustainable development, or for any number of good causes.

I know that I personally am much more effective in my own work helping people who are suffering from depression, anxiety, and trauma when I'm making sure to spend time and energy on myself, doing – including eating! – things that make me feel good. As a matter of fact, I would go so far as to say that my ability to enjoy myself without guilt is one of the gifts God has given me to make me resilient. Put more simply, when I do good stuff for myself, I can bounce back that much more easily when the bad stuff happens.

Finally, life doesn’t have to be all or nothing! We don’t need to choose between Spartanism and Hedonism; we can take our pleasure in moderation. And nowadays the choice between social vice and virtue need not be so sharp, either. For example, one can find lists of “slave-free” chocolate brands, and there are several international organizations now advising cocoa-producers how they can make their farms environmentally sustainable.

So go ahead and eat that (Fair Trade!) chocolate every day. It might just be a mitzvah.

Unblocked, and Grateful

2011-07-09T23:56:00.001-07:00

Here’s another entry in my Grief and Gratitude series.

Today I’m planning to submit a short story to a literary journal for possible publication, the one I mentioned in my previous post. I’m very excited about this, partly because finishing a story always moves me, but also because this story is palpable proof that I’ve become unblocked – I can indeed go on writing even after publishing my memoir.

I’ve been writing stories, in fits and starts, since I was six. My first was called “Susan the Clown,” and told the story of a clown whose big, awkward feet saved the day by outrunning the bad guys when her circus was robbed. Since then I’ve had long dry periods, but have come back to writing time and again as a way to process my experience and express my creativity.

While I was writing my original blog, and when I started to transform it into And Twice the Marrow of Her Bones, I was afraid I’d never again be able to write about anything unconnected with my daughter’s death. Then a friend told me about a three-day workshop on writing dialogue that was to be given in my area. Thinking it would help me with the book, I signed up.

Well, it did help with the memoir but, equally important, it showed me that I could still make stuff up – and stuff that had nothing to do with illness or death, at that. Since then I’ve participated in several workshops run by the same program, a writing group, and a regular writing course. These allayed my fear that I'd never write again once the book was out.

Then a new fear replaced my original one: Perhaps I could do writing exercises or even start stories, but I’d never be able to finish an entire story. Worse, all I seemed able to write was fictionalized memoir – stories so closely based on my own experience that I felt they didn’t “count” as fiction. True, one if my stories was accepted for publication in Israel Short Stories, an anthology of short fiction written by English-language writers living in Israel, but I’d written it about twenty years ago and only slightly revised it for submission last year. I was afraid the well of my creativity had dried up.

But for the past several weeks I’ve taken a short memoir that I started in the writing group and transformed it into a story with a completely different protagonist and message, as well as a main plot that I invented. And today I’m submitting it.

In my post Writing and Resilience, I related how writing about Timora’s illness and death has helped me process my traumatic experience, and how writing helped Timora deal with hers. I think that moving forward – beyond my trauma – with my writing is integrally bound up with moving forward in my life; that is, with my resilience.

And I’m truly, truly grateful for that.

Virtual Tour: Reiki and Resilience

2011-06-26T13:04:00.000-07:00

Wow, I see it's been two full weeks since I last posted. I've been writing a short story to submit for publication; hopefully it will be accepted and I'll be able to let you know when it actually appears.

In the meantime, the final stop on my virtual book tour for my memoir was Moonlight, Lace, and Mayhem, in which I wrote a guest post on Timora's experience with the Japanese healing technique Reiki. Here's the post:

At the age of twelve, my daughter Timora was diagnosed with leukemia. I’d like to share with you how Reiki, a traditional Japanese healing technique, helped her for a good part of her time in this world, until she left it at the age of eighteen. The story is, I believe, a wonderful example of how body and spirit are intertwined, and how attending to our spiritual side can help us even as we face physical hardship.

Reiki, which means “mysterious atmosphere; spiritual power,” channels healing energy from the spiritual world through a practitioner’s hands into the body of a person who is physically or emotionally suffering. When Edna, the Reiki Master to whom we turned, laid hands on Timora, her pain would decrease, the color would return to her face and lips, and she would relax as she could under no other circumstances. She told me it was if a gentle light was radiating from Edna’s hands and spreading throughout her body. Edna taught her to lay hands on herself between sessions, which relieved not only her pain, but also the depression that would grip her from time to time, and helped her sleep on nights when everything seemed just too much to bear.

No less important than the treatments themselves were the five Reiki Principles that Edna taught Timora to recite every day:

Just for today, I’ll let go of anger.

Just for today, I’ll let go of worry.

Just for today, I’ll be grateful for what I have.

Just for today, I’ll work with integrity.

Just for today, I’ll be kind to others and to myself.

Timora, raised in our observant Jewish family, had always had a strong religious sensibility, but Reiki gave her the opportunity to express her spiritual leanings directly and practically. After three treatments, she asked to study Reiki in order to practice it herself.

I’ve written a memoir entitled And Twice the Marrow of Her Bones, which describes my journey with Timora over the six-plus years of her illness, and without her after she died. In it, I describe how she delighted in her ability to relieve other people’s suffering, even when she herself was undergoing the most extreme of treatments:

Timora was a natural healer, a vessel for a life-affirming energy that would pass through her to others when she laid hands on them…. Once, while she was hospitalized for her second bone marrow transplant, Tehila, [a hospital] volunteer… came to visit her feeling nervous and upset about something that was happening in her life at that time. Timora got out of her bed and made Tehila lie down. She then stood by the bedside and gave her a Reiki treatment. Tehila fell asleep almost instantly and woke up a short time later feeling much better, saying she hadn’t had such a refreshing and relaxing rest in a very long time. Timora later told me the healing energy that had passed through her body into Tehila had refreshed and eased her as well – physically as well as spiritually.

Timora’s Reiki journey didn’t end, it seems, even with her death. Edna has told me that sometimes, when she is treating a client, she feels Timora right there alongside her, strengthening the energy that is pouring through her and into the person they’re both helping.

Edna told Timora the day we met her, “Reiki won’t cure you, but it can heal you.” After my daughter’s experience, there is no doubt in my mind that whatever our burdens, if we open ourselves to what the spiritual world has to offer us, it will help us heal – by easing and enriching our path through this unpredictable, and often cruel, material world.

Virtual Tour: Another Very Positive Review for Twice the Marrow

2011-06-12T11:26:00.000-07:00

As part of my virtual book tour, Jody Nicholl reviewed my memoir on the blog Susan Heim on Parenting. Susan Heim is editor of the "Chicken Soup for the Soul" series, and author of other parenting books. Here is the review:

I can’t even imagine losing a child, and I pray that I never have to deal with that. My husband lost his sister when he was 10. She got sick with a brain tumor when she was 2 and passed away when she was 12. It was 10 hard years of being in and out of the hospital for them, and I am sure it took a toll on the whole family. She was loved so much and, still to this day, 27 years later, tears are shed at the mention of her name.

Reading And Twice the Marrow of Her Bones made me thankful for my healthy little girl. Susan Petersen Avitzour writes this heartfelt memoir of how she lost her daughter, Timora, to cancer. She talks about the journey she went on with her daughter, which started at the young age of 11, the struggles they had to endure, and the way they had to sculpt their lives to meet the needs of not only Timora, but the other children in the family. All this makes this mom a hero in my eyes. It must have been so hard for her to stay strong and keep positive in the eyes of others. The writing is beautiful, and even though some people try and stay away from a non-cheery read, I really suggest you give it a shot. There is just something about this book that made it hard to put down … something about this mother that made me want to try harder and do better. It’s one of those books you will want to read and recommend to others.

Virtual Tour: How I Learned to Live in the Present

2011-06-06T08:34:00.000-07:00

This is a post I wrote for Stephen Tremp's blog, Breakthrough Blogs, as part of the virtual tour for my memoir:

We usually think of a personal breakthrough as a realization, or a new idea, that all at once changes the way we see things. I’d like to tell you about a more gradual kind of breakthrough – a personal process that slowly but dramatically changed the way I experience my life.

Like so many others in the modern world, I spent most of my adult life preparing for the future. But the future I anticipated never really came, because by the time my plans actually worked out I was so busy planning the next stage of my life that I barely had time or energy to appreciate the fruits of my labors.

Then, just after my daughter Timora turned twelve, she was diagnosed with leukemia. Suddenly, there was no way we could predict what would happen the next day, let alone the coming weeks, months, or even years, and so planning became nearly impossible. Daily tasks like cooking and shopping gave way to scheduled and unscheduled visits to the doctor. Weekly schedules became subject to the possibility of sudden hospitalizations. And longer term? Well, with almost no notice I could lose my daughter. How could I possibly prepare for that?

I coped by developing a new skill – I learned to live in the present. I cultivated what I now recognize as mindfulness – attentiveness to whatever was happening in the present moment. I didn’t stop all planning, of course, but I directed most of my thoughts to the here and now. Most of the time I left the future to God, in whose hands it rested anyway.

This new (for me) way of being turned out to be a true blessing. Paradoxically, as I let go of the idea that I actually had the power to determine the course of my future, I also let go of a great deal of anxiety – and found myself better able to experience my life more fully as it unfolded. Also, realizing the extent to which nothing in this world is truly permanent made me stop taking the many good things in my world for granted, and appreciate them more deeply.

Especially people. Although I’d always been happiest spending time with those I love, I began to cherish more than ever my moments with them. I also found myself able to give them more of myself than I had before I understood just how fragile our lives really are.

Having learned to live in the present stood me in good stead when the worst finally happened, and Timora died after a six-year struggle. Losing her brought into the sharpest possible focus just how important my surviving loved ones are to me.

I’ve written a memoir called And Twice the Marrow of Her Bones, which recalls – among other things – my personal, philosophical, and spiritual journey over almost sixteen years, beginning when Timora’s first symptoms appeared. One of the themes I explore there is the one I’m discussing here:

“When I can say, ‘I’ve done whatever I can for now,’ and at the same time manage to acknowledge the limits of my own power and give my fears and anxieties up to God, I come closer to becoming both whole within myself, and wholly with the other people in my life.”

Our family survived the tsunami of Timora’s illness and death not only intact, but closer than ever. And while I will always carry with me the grief of a bereaved mother, I know that my newfound mindfulness significantly contributed to my resilience – and, ultimately, to that of the rest of my family.

Virtual Tour: Another Glowing Review for Twice the Marrow

2011-06-02T07:37:00.000-07:00

As part of my virtual tour, Joyce Anthony reviewed my memoir in her blog Books and Authors. Here's the review:

This is my seventh or eighth attempt at what has to be the most difficult review I have ever written. And Twice the Marrow of Her Bones has a fairly straightforward synopsis. Susan Petersen Avizour had a good job, a loving husband and seven children that meant the world to her. Their lives were ones many yearn for--until the day her middle daughter was diagnosed with leukemia.This book follows Susan and her family through the several years leading up to her daughter's death--and into the aftermath. Through weekly updates at her church, a blog written five years later, based on these updates and poems written by Timora, we get to see how Timora's life, illness and death impacted not only her family, but those around her.

What is complicated about reviewing this book is finding words to describe pure emotion. The author holds nothing back in the telling of her story. You feel her pain, the anguish of feeling that all hope is lost. You feel her great pride in a daughter that tries to make the most of every minute she has on Earth.

Words do not flow from the pages of this book. And Twice the Marrow of her Bones is an exercise in capturing and sharing pure, untainted emotion. The subtitle is "A Mother's Memoir" and that doesn't come close to describing this book. The closest description I can come up with is that this book IS a mother's love.

Women everywhere (and men too) will feel themselves in this book. Even if you have not physically lost a child, every parent fears that chance. As your child moves from babyhood to school and from school to adulthood, you feel a sense of loss for the being they once were. Take that feeling and multiply it a hundredfold and you can come close to what a parent feels when physically losing a child.

This is not an easy book to read. You will find the need to step back and get your emotions in check before continuing. You will have not only the wish, but an undeniable need, to hug your own child. You may even find yourself having to force yourself to let them go. In the end, you will feel as though you have been given one of the greatest gifts in existence, a mother's pure, unconditional love.

I am afraid there arent't enough colors on the Rainbow Scale to rate And Twice the Marrow of Her Bones.

Virtual Tour: Keeping Your Balance When the Earth Shakes

2011-05-31T10:43:00.001-07:00

I wrote the following guest post for the blog Leadership Garden Coach, as part of the virtual tour for my memoir. It's called "Keeping Your Balance When the Earth Shakes":

Sometimes it takes a tsunami – serious illness, bereavement and grief, or another disaster – to bring us face to face with our own imperfection. And sometimes recognizing our limitations and reaching out to others for help can ultimately empower us.

We’re all familiar with the myth of Superwoman – the belief that women nowadays should be able to do it all, balancing the demands of workplace and family without batting a well-groomed eyelash. In the early nineties, many people called me “Superwoman,” and I admit that I too tended to think of myself that way. I was working full-time-plus as a lawyer, and my husband Daniel was working almost full-time as an engineer. Together, we were parenting seven children. We had a fairly stable balance worked out; whichever of us was free would do whatever needed doing at home, with some help from the older children. Life seemed manageable.

Then an earthquake struck when our fourth daughter, Timora, was diagnosed with leukemia right after her twelfth birthday. Suddenly, one of us needed to be with her in the hospital, physically and emotionally, all day every day. Someone had to take care of the other children, physically and emotionally. And both of us had our work to keep up.

I’ve written a memoir, entitled And Twice the Marrow of Her Bones, about the six-plus of Timora’s illness, and about my emotional, philosophical, and spiritual journey after my world collapsed when she died in 2001. In it, I describe (among many other subjects and themes) how we managed to keep our lives together while Timora was in treatment. It certainly helped that both our workplaces demonstrated great flexibility regarding our work hours. Our older daughters were amazing, staying with Timora in the hospital when they could, often sleeping at her bedside. Our friends and community pitched in as well; we didn’t have to cook at all for the first year, and there were always volunteers whenever we needed errands done.

But no one but Daniel and I could do the most important things for Timora, or for our other children. These overwhelming responsibilities exposed each of our own particular strengths and weaknesses, and I found myself unable, for the first time, to handle certain aspects of my job as a parent. As I write in Twice the Marrow:

“As willing as I was to run around the hospital, the city, or even the country if required to meet Timora’s needs, and to sit by her bedside for long, boring days, there were some parts of the new routine that I wasn’t at all good at. I identified so strongly with her pain or her low mood that I was often unable to keep my perspective. Sometimes, when she felt she couldn’t take it anymore, she’d refuse to take her medications, to allow the nurses to take blood, or otherwise to cooperate in her treatment. At those times, my sympathy for her paralyzed me. Daniel, in contrast, was able to separate himself enough from his empathy to do what had to be done.”

(Daniel discovered some of his limitations, too, as I found it easier than he did to deal with the other children and their increased emotional neediness.)

Almost unbelievably, our family has proved resilient; Daniel and I made it through the inferno of Timora’s illness and death with our marriage strengthened and our relationships with our surviving children closer than ever. What’s more, in the past few years I’ve studied for and embarked on a new career as a psychotherapist, which I find much more satisfying than law.

I’m quite sure that for me, at least, much of this resilience has to do with having learned that I really can’t do everything, and that I can and should count on those around me to do what I can’t do as well. No one is superhuman, after all.

Twice the Marrow and Pastoral Care

2011-05-29T07:11:00.000-07:00

Rabbi Miriam Berkowitz, co-Director of Kashouvot, and organization dedicated to Pastoral Care, has written some very kind words about my memoir:

In And Twice the Marrow of Her Bones, Susan (Sara) Petersen Avitzour offers us the gift of her soul.

For even the best intentioned physical, spiritual or mental health provider, there is always a barrier of privacy, silence and distance between the experience of the people and families they try to help/ serve. Sara gives us a peek into the experience of one family's loss of a precious daughter and simultaneously shares with us Timora's talents, wisdom and zest for life.

She chronicles in minute detail the experiences of seeking medical care, grappling with illness and navigating the medical system.

In parallel she uncovers her spiritual journey through journaling, poetry, theological reflections and ambivalent return to daily life.

No topic is too private and all are related: food, holidays, parenting, support groups, community, travel, music, career, apathy and depression.

Her labor of love is useful to many different audiences:

-Families of children grappling with serious illness can open their eyes and process their own unique experiences with more lenses and on a variety of levels, without self judgment but with the benefit of time and experience.

-Psychologists and social workers can see the benefit of relating to siblings and the whole family dynamic.

-Pastoral caregivers will find deep insights into prayers, synagogue experiences and Torah text that can help universalize or open up the experience of their patients.

-Rabbis and synagogue staff will become sensitized to the volatile and intense effect holiday times have on memory, pain and alienation of grieving families.

-People of faith may grow from hearing the story of a faith retained yet burnished with more doubt and nuance.

For your mind, your heart and your spirit, get this book and open the first page. You will not put it down, and you will be transformed.

Virtual Tour: Healing and Spirituality

2011-05-25T11:42:00.000-07:00

This is a guest post that I wrote for the blog All Things That Matter, as part of my virtual tour :

My daughter, Timora, was diagnosed with leukemia just after her twelfth birthday, and left this world shortly after her eighteenth. Those years took her on a remarkable spiritual journey, which I’d like to share with you today.

Timora’s spirituality combined a relationship with the God she’d been brought up to believe in with a more universal connection to the divine cosmic energy that sustains all life. The memoir I’ve written, And Twice the Marrow of Her Bones, tells how she came to me one day with a thoughtful look:

“‘You know, Eema,’ she said, ‘I used to be really angry with God. I couldn’t understand why He seemed to be ignoring my prayers.’

I put down the book I’d been reading, and moved a little closer.

‘Last year, on [the Jewish holiday of] Shavuot, I got so mad that I started screaming at Him. I said that He was stingy and mean, that He wasn’t helping me even though He could.’

I remembered that time well. She’d been weak and depressed, hurting all over. Sores burned her mouth every time she tried to eat, and made every bite taste revolting. She was sleeping even worse than usual, and was haunted by bizarre, obsessive dreams.

I put my hand on hers. What could I say?

‘... You know what happened then?’

I shook my head, still mute.

‘I lay down, and suddenly I started to feel a wave of new strength filling me, flowing into my blood. I told God I’d make a deal with Him. He’d go easier on me, and I’d stop being so angry at Him. That night I was able to get out of bed and say to myself, I won’t sink into this cesspool. I can be strong, I do have someone to give me the strength to live like a person. And I will, and that’s that.’”

Timora later discovered Reiki, a Japanese healing art that teaches its practitioners to become vessels through which spiritual energy flows into people who are suffering. It helped her so much that she eventually became a practitioner herself, laying hands both on herself and on other people, whose discomfort she delighted in alleviating.

Timora departed this world much as she had dwelled in it, in deep connection with the spiritual forces that animate it. As I relate in my memoir, her Reiki teacher visited her in the hospital a few days before she died.

“As Edna touched Timora and the energy flowed between them, Edna felt, through her fingertips and deep inside herself, that part of Timora’s soul was already on the way to the next world. Another part of her spirit was lingering behind – hesitating to leave us because she was worried about us, not wanting to cause us pain – but at the same time longing to be released.

As the energy between them intensified, Edna experienced herself as being together with Timora, in a corridor suffused with light unlike any she’d ever seen or sensed. The corridor led toward an even stronger, more beautiful light, which could not then – and cannot now – be depicted in words, but seemed to be the source, expression and richness of everything that is Good.

When Edna removed her hands and said her last farewell to Timora’s earthly form, she was left with a feeling she can only describe as a kind of completeness, a fullness. This feeling, she says, has not entirely left her to this day. Timora gave her an incomparable gift: Having experienced those few minutes of light together with Timora’s spirit, Edna now knows in the deepest sense possible that she has nothing to fear from the other side.

After her release (Edna tells me) Timora’s spirit did not stay away for long, and soon returned to become a kind of spiritual guide and teacher. Every so often, she comes to Edna during Reiki sessions, and Edna sometimes asks her for help and guidance. When she comes, she adds her own spiritual energy to the currents of Reiki moving through Edna’s hands, making them that much more powerful as agents of healing.”

I believe that God provides us with a well of strength that we can draw upon to go on, even to help others, despite life’s – and death’s – trials and tragedies. We may draw from this well through prayer, or receive it in the form of the energy that Reiki teaches us to harness or, doubtless, in other ways I don’t know of. This strength, this continually replenished energy, is none other than God’s healing presence in our hearts.

Virtual Tour: Nikki Leigh Interviews Me About My Writing

2011-05-23T07:54:00.000-07:00

In my latest stop on the virtual tour I'm now on to promote my memoir, Nikki Leigh interviews me on her blog, Your One Stop for Free Information. Here's the interview:

I would like to introduce you to Susan Avitzour, she is the author of And Twice the Marrow. It is a memoir where she shares the very personal story about her daughter and her family after her daughter’s cancer diagnosis. It is a daughter’s struggle and a mother’s struggle as she works to help her daughter navigate a journey no mother and child want to face. Through the pages of this book she shares their personal story and shows others how they can face illness, disappointment, loss and find resilience in their lives despite trials and hardships.

Your Name: Susan Petersen Avitzour -

Nikki Leigh - Where you are from and where are you now?

Susan Petersen Avitzour - I’m originally from Coney Island. I’ve lived in various places including Connecticut, Berkeley California, and Paris, but for the past thirty-plus years I’ve lived in Israel – Jerusalem, to be exact.

Nikki Leigh - How did you get started writing?

Susan Petersen Avitzour - I’ve been writing since I was a child. I wrote my first story in second grade, and have been doing creative writing – both fiction and nonfiction – on and off ever since then.

Nikki Leigh - What do you do when you are not writing?

Susan Petersen Avitzour - I’m a clinical social worker, and work as a psychotherapist both in a public hospital clinic and in private practice. Besides that I love to read, sing, dance, hike, and (most important) spend quality time with family and friends.

Nikki Leigh - What would readers like to know about you?

Susan Petersen Avitzour - I raised seven children – six girls and a boy. I’m now on my fourth career, having been a lawyer, a mediator, and a translator/commercial writer before going back to school to get my MSW.

Nikki Leigh - What inspired your first book?

Susan Petersen Avitzour - My fourth daughter, Timora, died of leukemia in 2001. I knew early on that I wanted very much to capture my experience both as the mother of a child with cancer, and as a mother who lost her child to cancer, in a way that may help and possibly even inspire others who have or are experiencing hardship – or are interested in how others overcome life’s challenges.

Nikki Leigh - What are the titles of your books and what genres are they?

Susan Petersen Avitzour - And Twice the Marrow of Her Bones – Memoir

Nikki Leigh - Why are you specially qualified to write about this topic?

Susan Petersen Avitzour - I happen to be a person who has always both felt my experiences keenly and reflected on their meaning for me; this is exactly what I do in my book.

Nikki Leigh - How do you manage to keep yourself focused and on track when you’re writing a book?

Susan Petersen Avitzour - Because of its special nature, the book I wrote was on my mind all the time anyway. But even when I’m writing stories that have nothing to do with the loss of my daughter, once I’ve started them they kind of take me over, so that I don’t really have any trouble staying focused.

Nikki Leigh - Do you write to make money, for the love of writing or both?

Susan Petersen Avitzour - For the moment, for the love of writing, but also in order to reach out to my readers – kind of start a conversation with them. I wouldn’t object to making money, though I intend to donate any profits from my memoir to charity.

Nikki Leigh - Where can people order your books?

Susan Petersen Avitzour - On Amazon – http://www.amazon.com/Twice-Marrow-Her-Bones/dp/9659146426

Nikki Leigh - What format are your books – e-book, print, audio etc?

Susan Petersen Avitzour - Print, though I do intend to publish to Kindle as well.

Nikki Leigh - What do you have in the works now?

Susan Petersen Avitzour - A collection of mixed-genre stories that I’ve tentatively entitled Scenes from My Life and Other Stories.

Nikki Leigh - What does the future hold for you and your books?

Susan Petersen Avitzour - If only I knew! I hope very much that my memoir will reach as many people as possible who may benefit from it.

Nikki Leigh - What was the most successful thing you did to promote your books?

Susan Petersen Avitzour - I spoke about the book in several public forums.

Nikki Leigh - What makes this book special to you?

Susan Petersen Avitzour - The book is a memorial to my wonderful daughter; and the culmination of an intensely creative and therapeutic process in which I revisited and explored my own tragedy and its personal and philosophical implications in a way that can help other people deal with their own difficulties – all rolled into one.

Nikki Leigh - What sort of comments have you gotten about the content of the book?

Susan Petersen Avitzour - All the comments I’ve gotten have been very positive, and very intense. A great many people have told me they couldn’t put it down – and many of those stayed up all night reading it. Some have told me they found it uplifting or inspiring; others have thanked me for writing it and told me that it’s helped them deal with difficulties they are facing in their own lives, even if these difficulties are very different from those I describe in the memoir. No one has said anything noncommittal or polite, such as “it was interesting.” Everyone has used expressions such as “beautifully written,” “powerful,” and “extremely moving.”

Nikki Leigh - What makes this a book that other people MUST read and WHY?

Susan Petersen Avitzour - Life is trauma. All of us, at one time or another, must confront the loss of someone who is precious to us, or some aspect of our lives with which we find it difficult to part. Many of us must also deal with the disruption of normal life that serious illness or disability brings with it. My book both shows others that they are not alone in the emotional, physical, and family stress that inevitably accompanies these tragedies, and depicts how I personally have dealt with it.

Many people also struggle with their faith in a loving God under these circumstances. My book deals with this question head-on. Although the memoir deals specifically with my relationship with Judaism, and how it affected and was affected by the loss of my daughter, my reflections are relevant to people of all faiths.

Nikki Leigh - What people NEED to read this book and WHY?

Susan Petersen Avitzour - People need to be interested in entering into the book’s intense emotional world, as I pull no punches and describe my experiences and thoughts directly and honestly.

Nikki Leigh - What sparks your creativity? Any tips to help others spark their own creativity?

Susan Petersen Avitzour - I wish I knew! I mostly find that sitting down and actually starting to write is the best spark to creativity, but (of course) it’s no guarantee.

Nikki Leigh - If a potential reader thinks that your book wouldn’t interest them, what would you say to convince them to buy? I’m thinking something better than “Its the greatest book ever.” Give me something more specific

Susan Petersen Avitzour - If you or someone you care for has ever faced extreme difficulty or loss, or if how others confront such difficulty or loss interests you, this book will speak to you. It also both tells my story in an emotionally evocative narrative, and reflects on it in a personal and philosophical journal, so that if you like either genre it has something for you.

Grief and Gratitude: Hot Showers

2011-05-20T08:47:00.000-07:00

I’ve just finished taking my pre-Shabbat shower. For this week's post in my Grief and Gratitude series, I’ll write today about how grateful I am for my daily full-body cleansing.

There’s an incredible amount to be thankful for in my experience of showering:

I have access to clean water. Over a billion people in the world lack access to safe drinking water, two and a half billion lack access to adequate sanitation facilities.

My apartment has running water. Only 3.5 billion people in the world have this privilege. And my running water is hot and cold.

My water pressure is not so bad. OK, it’s not great, but it’s not the trickle that the residents of East Jerusalem, for example, have to live with. (See the first episode of Sayed Kashua’s “Arab Labor” to see what I mean.)

My bathroom is clean and safe. My bathtub is long enough for me. I am fully mobile, and can easily get in and out of by bathtub.

I have enough money for Dead Sea products with which to wash my dry skin, and for good shampoo. Several years ago I read a heartbreaking article about teens in Israeli development towns who could not afford even the cheapest kind of soap.

I have a healthy body, including all the parts, to wash. I can let the water run over all my body, and don’t have to watch out for a cast or a catheter.

I’m sure there’s more, but Shabbat is fast approaching.

One of the nicest things about my shower is that it’s usually the last thing I do, so that no matter how frustrating or crazy my day may have been, and no matter how low my mood may be by evening, I can always perk myself up by using my gratitude.

Virtual Tour: Faith in Times of Crisis, or Crisis of Faith?

2011-05-17T05:26:00.000-07:00

This is the guest post I wrote for The Book Connection, as part of the virtual tour I'm now on for my memoir:

I am a religiously observant Jew, and have been for thirty-five years. Ten years ago, my faith was challenged in the starkest way possible, when my eighteen-year-old daughter Timora died after a six-year struggle with cancer. Her illness and death brought me up against perhaps the most perplexing of all questions facing all people of faith: How could the loving God in whom I believe have allowed all this to happen? And, conversely, how can I continue to love God even after all that has happened? Indeed, how can a loving God preside over a world in which people – including millions of children – have suffered and died unjustly since the beginning of human time, and how can any thinking person remain faithful to such a Being?

I address this issue (among many others) in a memoir of my journey with my daughter during her illness, then without her after she left this world, entitled And Twice the Marrow of Her Bones. I respond – tentatively and humbly, as one must necessarily answer such questions – with my own concept of a personal God.

Children, and many adults, believe in a simple, one-to-one relationship with God. It’s a kind of bargain: If we lead a good life, evil will not befall us. But I consider my connection with the Divine somewhat differently. I see God as having created the world, set it in motion, and given us the principles by which we may live our lives as spiritual and moral beings. I do not see Him, however, as continuing to directly cause everything that takes place in our present world. Rather, I understand His presence in this era as providing us with a well of strength to draw upon when life presents us with its inevitable trials and tragedies. Perhaps even more importantly, He continually grants us the capacity to love and draw comfort from one other. These gifts empower us to survive our losses, and to build new lives for ourselves when our old ones seem to have fallen apart.

As I write in my memoir: “Loving God keeps me from bitterness, cynicism and despair, by opening me to the healing energy that keeps me from paralysis and gives me the strength to go on. Especially, to go on performing acts of loving kindness, and raising my children to do the same, even after our devastating loss. For by engaging in acts of kindness, by forging loving relationships with those around me, I become – so I believe – a vessel for giving, and for receiving, God’s own love….

God has been an enormous source of the strength and resilience that has enabled me to face the suffering I’ve both experienced and seen others experience in this world. And my faith enables me to feel grateful for my life despite that suffering, and to look toward the future with hope.”

Bereavement – even the loss of a child – need not cause a crisis in faith, if we decide to go on living and loving as we were created to do, and trust our Creator to bestow upon us the spiritual gifts that allow us to do so.

Seraphic Secret Reviews Twice the Marrow

2011-05-14T11:20:00.000-07:00

It was Robert Avrech, a Hollywood screenwriter, who inspired me to start this blog when he began blogging about the loss of his son Ariel. Robert reviewed my memoir last week in his blog, Seraphic Secret. Here's the review:

And Twice the Marrow of Her Bones is the profoundly touching memoir of a mother who lost her young daughter, Timora, to cancer.

Avitzour lives in Jerusalem with her husband and children. Her memoir is driven by a unique narrative voice. The support of her community and unique synagogue—Kehillat Yedidya, a liberal modern Orthodox congregation—are powerful reminders that sharing joy, sorrow and tragedy is how we endure the vicissitudes of life.

The life and character of Timora are exquisitely rendered. Timora is young, bright, creative and deeply compassionate, even as Leukemia does its terrible work. Through a mother's voice, personal diaries, and Timora's poetry, Seraphic Secret is left with the powerful wish that we would have had the pleasure of knowing Timora when she was a presence on this earth.

Timora's radiant character can be gleaned from one of her unfinished poems:

To live this moment
To breathe this time
Not to think what the future will bring, if at all
Not to remember what hurt, what was missed, what was lost
To enjoy the here and now.

I thank Robert very, very much for his kind words.

Virtual Tour: Healing and Spirituality

2011-05-11T10:13:00.000-07:00

As part of my virtual book tour for my memoir, I wrote a guest post last week for the blog "All Things That Matter," about Timora's experience with Reiki, healing, and spirituality. Here's what I wrote:

My daughter, Timora, was diagnosed with leukemia just after her twelfth birthday, and left this world shortly after her eighteenth. Those years took her on a remarkable spiritual journey, which I’d like to share with you today.

“‘You know, Eema,’ she said, ‘I used to be really angry with God. I couldn’t understand why He seemed to be ignoring my prayers.’

I put down the book I’d been reading, and moved a little closer.

‘Last year, on [the Jewish holiday of] Shavuot, I got so mad that I started screaming at Him. I said that He was stingy and mean, that He wasn’t helping me even though He could.’

I put my hand on hers. What could I say?

‘... You know what happened then?’

I shook my head, still mute.

Virtual Tour: A Peek Inside My Memoir

2011-05-09T06:20:00.000-07:00

Today Dianne Ascroft published on her blog an excerpt from my memoir, And Twice the Marrow of Her Bones, as part of my virtual book tour.

The post can be found here.

Virtual Tour: The New Book Review

2011-05-06T05:31:00.000-07:00

Today my memoir visits Carolyn Howard's "New Book Review." The post, which focuses on my readers' reactions to the book, can be found here.

Virtual Tour: Touching on What We All Share

2011-05-04T10:23:00.000-07:00

As part of the virtual book tour for my memoir, I was invited to write a guest post for The Cuckleburr Times, an online magazine for writers. This is the post I wrote; it's called "Touching on What We All Share." This is how it starts:

I recently published a memoir, And Twice the Marrow of Her Bones, about my daughter Timora’s struggle to lead a normal life while battling leukemia, and about my own journey as a mother while she was ill and as a bereaved parent after she died at the age of eighteen. To my delight and deep gratitude, “compelling,” “moving,” and “inspiring” are just a few of the kind words readers and reviewers have used to describe their reactions; many have said they couldn’t put it down – even stayed up all night reading it. I believe this is so partly because I wrote the book straight from my heart, the way I wanted – needed – to write it, rather than thinking about marketing considerations in mind, or obeying accepted wisdom in the publishing world.

You can read the rest here.

Twice the Marrow Virtual Tour: Review

2011-05-02T13:04:00.000-07:00

Today Yocheved Golani's review of my memoir was republished in her blog: It's MY Crisis and I'll Cry if I Need To. The post, which is entitled Death and Dying: Addressing the Hardest Medical Subject with Compassion, starts thus:

"B'SD 28 Nisan 5771 Today this blog is part of a Virtual Tour for the book you see above. I reviewed it months ago and came away deeply impressed."

You can read the entire post here.

Overwhelmed - and Grateful

2011-05-02T07:31:00.000-07:00

In this installment of my “Grief and Gratitude” series, I’d like to talk about my thankfulness for something that many may think a strange thing to be grateful for – the fact that I have too much to do.

In my former life, I too would have thought this strange. When I was raising seven children with a full-time-plus career, I always had too much to do, and I was always exhausted and often distressed. I dreamed of a time when every hour of the day wouldn’t be over-booked. A time when I’d be able to read, meet my friends, take a nap…that would be Heaven, I thought.

After Timora died, I found myself with all the time I wished for back then, in my old life – and it was Hell. As I expressed it in my original blog (and described in my memoir), “Not only did I lose [Timora] herself, but I lost a whole world of experience, as the activities on which I’d been spending a great deal of my time suddenly became irrelevant; I literally didn’t know what to do with myself.” Unable to work, unable to concentrate on anything other than what I absolutely had to do, I awakened every day to the prospect of hours upon hours of empty time stretching before me.

Now, ten years later, my life is full again – perhaps too full. I have my work, my marriage, my children and grandchildren, my writing, my improvisational theater group, my book club…I’m sure I’m forgetting something. But after going through that emptiness, I appreciate every single activity I’ve crammed into my overflowing life.

Now, whenever I start to feel overburdened, I think of all the reasons for which I could have too little to do. I, or a significant other, could be ill, or severely disabled. I could be unemployed. I could be poor, and not able to afford drama groups, books, or even train fare to visit my children and grandchildren. I could have no friends to meet. For that matter, I could be in prison…. You get the idea.

Yes, I’m tired, and sometimes feel overwhelmed. But I thank God that the opposite is not the case, and that my life is now filled to (and over) the brim with stimulating, meaningful, and satisfying doing.

Irrepressible Hope

2011-04-28T03:17:00.000-07:00

One of the things I’ve written about more than once is the irrepressibility of hope - both mine and Timora's; I believe that resilience is hope's natural corollary. While she was ill, hope burned in me throughout her first year of intensive treatment and through her remission, as it would in anyone. When the cancer returned and we learned that to date no one had survived a relapse following a bone marrow transplant, I managed to push the knowledge out of my mind, and concentrated on hoping it wouldn’t apply to my daughter.

A friend whose wife died of breast cancer a few years ago once told me that he and she had, at one point, “decided to live in a Fool’s Paradise.” I know just what he meant, and remember lingering until the very end in that false Eden. Even as Timora was being rushed to her last sickroom, I was still there. As I wrote in my memoir:

“When I came back to the pediatric ward to get her things after accompanying her to the ICU, one of the nurses came up to me and asked how I was doing. ‘I’m fine,’ I said. ‘I understand that Timora’s in the ICU because she needs to be on a respirator for a few days until we get her lung infection cleared up. It’s good she’s being sedated, because it would be terrible for her to be awake while she’s on a respirator.’

‘It’s really good you’re taking it that way,’ the nurse said.

‘What do you mean?’

‘Well, most parents get very upset when their child is taken to intensive care, because of what that so often means.’

What that means? Oh my God, could she be saying –

‘No, I don’t think about it that way,’ I said to the nurse quickly, and went out the door.”

Ten days ago, I wrote about my trip to Athens with my high school friend Laurette to visit our friend Danae, who three weeks before had started chemotherapy for pancreatic cancer. I’d been feeling quite desperate about her situation; try as I might, I could see no hope. The prognosis for her type of cancer is truly awful. Worse, she’s been a widow and a single mother for eight years now. What will be with her boys?

But the visit cheered me up, because we found Danae in much better shape – with more energy and fewer chemo side effects – than I’d feared. It was especially encouraging to see the resilience I’d always admired in her. She's staying far from the depression into which someone in her position could so easily sink, but rather calmly going about doing all she can to optimize her medical treatment, get her affairs in order for her children, and enjoy as much of her life as she is able. She also has loyal Athenian friends who want nothing more than to help her any way they can, some of whom are very close with her sons.

Being with Danae kicked me back into my hopeful mode. Now I look at the situation differently: Even though I lost my daughter, I can say that if Timora could be on the bad side of good statistics, Danae can be on the good side of bad statistics. As long as there is still something to try, there’s no reason to assume the worst will happen. Despite bereavement, despite lasting grief, hope’s embers were still present in my heart after all, and my visit with Danae stirred them back to life.

No Words

2011-04-24T05:55:00.000-07:00

I’ve just come back from pretty much the last place in the world I wanted to be today, or any day – Mt. Herzl, Israel’s military cemetery. My dear friends Haim and Ilana Watzman just buried their twenty-year-old son Niot, who died yesterday after a diving accident while on leave from his compulsory military service.

I of all people know that this happens, that children leave this world before their parents. But my shock at hearing the news was no less than if it were the first time I’d ever encountered this affront against nature. All I could think was, My God, it’s happened to them; what happened to me has now happened to them. I’ve been alternating between intense distress and stubborn disbelief ever since; it’s amazing how the disbelief lingers, even now, after my heart was torn out watching the family put their son and brother into the ground.

A mutual friend told me that she’s glad the Watzmans have me as a friend – someone who knows what they’re going through. But as I said back in January in my post Grieving and Sharing, my fervent wish has been all along that I would have no occasion to use the special knowledge and ability to help other bereaved parents. Especially if they’re friends.

I hope very much that I really will know what to say to help them on their journey through the pain of bereavement and, ultimately, towards healing. But for the moment, I can’t think of anything.

There really are no words.

Gratitude and Grownups

2011-04-20T08:11:00.001-07:00

As I’ve written more than once in my Grief and Gratitude series, I believe that one of the main things that’s made me resilient in the face of my life’s many traumatic experiences, most recently and my daughter’s death, is having learned to nurture a sense of thankfulness. I had a special opportunity to do just that at our family’s Passover seder this past Monday evening.

People often ask me before Passover where we will be for seder, and I always reply, “Where we are every year – at home.” One of my happiest times of the year comes when Daniel and I sit at the seder table with our children. The more children who come the better, as far as I’m concerned. When all seven lived with us, of course, they filled all the seats. But in recent years their number at the table has diminished. As they got older, some went abroad for a time, some got married, and some have started building lives as parents. And one stopped coming forever, just as she reached adulthood.

This year, we had our smallest seder yet, with only Ayala, Shulamit and her husband Gil (with their sweet daughter, four-month-old Arielle, as a bonus) representing the younger generation of adult Avitzours; our friend Steve joined us as well. (David went to visit Eliana and her spouse Omri in London, where she’s studying, and Elisheva and Tayir flew with grandson Imri to Nice, to visit a friend who’s studying art there. Ashira and husband Eran mad the seder at his parents' home this year.)

At first I was a bit upset that only a third of the children we have in this world would be with us for this most family-oriented night. But then I realized that this is just the price I pay for having adult children. And I certainly love having adult children - partly because they are so much fun to be with, but also because the alternative, after all, would be for them not to have grown up.

In the event, the seder was lovely. The six of us read the Hagaddah together, pausing whenever anyone had a question or a comment. We sang the series of songs at the seder’s end energetically, acting some of them out and laughing harder and harder as we progressed. We deeply enjoyed each other’s company; although I missed my other children (and grandson!), those present reminded me of their siblings’ continued presence in our lives. They reminded me, too, that in future years the others will also claim their places at our Passover table, which will always await them.

And for that, I am extremely grateful.

You Always Think There's Time

2011-04-18T04:34:00.000-07:00

One of the lessons I’ve learned from losing my daughter is that we should never put off spending time with people we love because we assume there will be plenty of time. We can always, we think, cultivate our relationships after we’ve finished written this important report, after we’ve studied for that exam, after we’ve cleaned the house, after we’ve earned and saved enough to buy a new house…. You know just what I mean. That’s what modern life is about, most of the time. I’d thought I was pretty good at putting this lesson into practice – as I've written in my memoir, I try my best to make time to see my children, my grandchildren, and my friends, and have even arranged my work schedule to facilitate this. But as it turns out, in some important ways I’ve been no wiser in this regard than anybody else.

This past week, I spent three days in Athens. Normally, I wouldn’t go to the effort and expense of flying abroad to stay for only three days. I wouldn’t choose the week before Passover to leave the country. I wouldn’t go without Daniel. But this was far from a normal trip; I went to Athens to visit one of my two best friends from high school, who very probably has no more than a few months to live.

Danae (at her request, I’ve changed her name to protect her privacy) and I met in seventh grade, on our first day at Hunter. Her parents had immigrated from Greece when she was six years old and, despite having had to master a completely new language, she’d passed the entrance exam to New York City’s highly selective public high school for girls. We immediately became close, even though – perhaps because?– we were so different in so many ways. She was deliberate, methodical, and thorough, while I was the ADHD queen – impulsive, disorganized, and never, ever on time. Whereas I’d sit down to write my papers, well, not even at the last minute, but sometimes months after the deadline had passed, she always handed in her work on time, with each “t” crossed and every “i” dotted. Her tales of the Greek immigrant community fascinated me, and I in turn introduced her to my family’s (admittedly untypical) version of the Jewish American experience.

Together, Danae and I weathered the normal turbulence of adolescence – and not-so-normal times, as when my father died suddenly when I was fourteen. Like most teenage girls, we kept nothing from each other – we shared our frustrations with parents and teachers, our crushes, our strong opinions about the issues of the day, and our dreams for the future. Hard as it is to believe, we never had a single fight during our five-plus years together.

In eleventh grade, she introduced me to her new friend Laurette, and we very quickly became a trio. Amazingly, again, we didn’t suffer from the jealousy and competition that so often plagues young girls’ threesomes. But after high school we dispersed, in keeping with contemporary American custom, to our respective higher studies and careers. Interestingly, none of us ended up living in the United States – Danae returned to Athens shortly after graduating in our school's accelerated program, I moved to Israel after law school, and Laurette settled in France, where her mother had been born and grown up, after her post-graduate studies.

Until last week, I’d seen Danae only twice since graduating high school – once in 1974, when I crossed Europe by train to visit her in Athens, and once in 1986 when she and Laurette visited me and my family in Israel. At first we were in touch only once every year or two (or three) - Danae defines herself as the "world's worst correspondent" - but with the advent of inexpensive international calling, we began to speak more often. Athens is only two hours from Israel, and I thought many times of going to visit. But the years went by and she got married, had two children, and built a whole life for herself, and the visit never happened; I never met her husband (who, sadly, died of cancer eight years ago) or her children. There was always some reason not to go, and it just didn’t seem urgent. There would always be time next year.

Then, two months ago, she was diagnosed with the nastiest form of pancreatic cancer – the one with a prognosis of a few months at most in ninety-eight cases out of a hundred. (If she’s in the lucky two percent, up to two years remain for her.) Suddenly, there may not be a next year. So Laurette and I decided, more or less on the spur of the moment, to surprise her for her birthday, which fell last Tuesday. (We knew there was no point in trying to arrange it with her, as she never wants anyone to take trouble for her, and also because she – like so many of us – chronically puts things off, especially enjoyable things.)

The visit, such as it was (three days after twenty-four years!), succeeded beyond our expectations. Danae was utterly, and very happily, surprised when we showed up at her apartment Tuesday late morning. Everyone she spoke with on the phone heard all about it; at least I thought I could make out the Greek words philae (friends) and gymnasium (high school) in each of her conversations. We found her in much better shape than we'd feared – she had enough energy so that we could organize a birthday dinner-party for her that evening, and she could organize an outing for all of us the next day to a café by the sea. She even had enough energy to worry that she wasn’t being a sufficiently good hostess, and kept saying, “If I’d known you were coming, I would have arranged more for you to do.” We kept replying, “If you’d known we were coming, you would have said no and we wouldn’t be here!”

We also had the kind of frank conversations that we used to excel at when we were teenagers. This time, though, the subjects were radically different; we spoke with her about getting her affairs in order, and her plans for her sons, who are eighteen and seventeen years old.

I hope very much that there will, indeed, be time for me to return to Athens, and that this past week’s trip will not have turned out to be my last. But I am certainly grateful to have had the chance to see my dear friend - and the chance to say goodbye, if our goodbyes when I left for the airport were really our last.

My relationships with those I love have comforted me more than anything else in my grief for my daughter. I think it’s a sign of my resilience that I’ve put a very high priority on nurturing those connections. But, I now see, I can do better; I hope very much that I will.

Wildflowers, Gratitude, and Process

2011-04-07T07:56:00.000-07:00

About two weeks ago, I wrote about wildflowers, in my first post in a planned series on "Grief and Gratitude." Last week, Daniel and I went north for three days on what we like to call a "flower trip." Our trip strengthened my belief that one of the most effective ways of strengthening our “thankfulness muscle” is to appreciate not only the places we get to, but how we get there and what we find along the way.

Our destination was the Galilee, one of Israel’s most popular areas for vacations and certainly its most beloved for nature trips. Armed with our trusty Wildflowers of Israel book, we hoped to see as many as possible of the hundreds of species of wildflowers that bloom there in early spring, but especially the rare kinds we'd never managed too see in the past. I couldn’t wait to get there and taste the relaxation I inevitably experience in the North – by now a conditioned reflex that kicks in as soon as we enter those rolling green hills.

But we didn’t let our haste to “get there” prevent us from going a longer way around in order to stop at some other places that were likely to be just as lovely in this season. So we made a detour to the coast, to the Sharon Park near Hadera, part of which is a nature reserve and a larger part of which is blessedly undeveloped, at least for the moment.

As always, we found a riot of color every direction we looked, and more varieties of blooms than we could count. Our eyes were treated to lovely sights whether they looked closely at a small patch of ground:

Or further off toward the horizon:

We left the park elated, and drove straight to the guest house where we'd reserved a room, in the Druze town of Beit Jann on one of the peaks of the Meron mountain complex. There we were surprised to find the rooms located in a partially unfinished house, over a supermarket. Not the most romantic of spots, but the room was clean and well-furnished, if not quite warm enough (the residents are used to the high-altitude temperatures), and the view beautiful. Our hosts were also lovely, and we got to know a bit about the lives of Israel’s Druze citizens, so what our accommodations lacked in luxury was more than made up for by a novel and interesting experience.

We dedicated our first excursion to orchids, of which there are several wild types blooming right now in Israel. This is some of what we found on the way to the orchids:

And when we got there:

Encouraged by our success, we decided to go to the Nicha Ruin, a hill that not only contains the remains of a Byzantine church but, according to the good book, should be covered in late March with wild tulips. (We’d gone there a few years ago earlier in the season, and had found only the first few blooms.) By now, surely there’d be tulips as far as the eyes could see!

Well, this year the rains came late, and not so much as a single tulip was budding. But what we found on the way up and on the way down was so gorgeous that it was easy to forgive Mother Earth for withholding her tulips.

The uncommonly lovely sight of patches of “common” irises:

And others:

We finished at Nicha in the late afternoon – the best time, we’re told, to watch for birds, which descend from the skies just before sunset to fill the trees near bodies of water. So we headed over to a nearby spot next to the Jordan River. Well, no birds, but we did get to spend a contemplative hour next to the incomparable sight and sound of burbling water:

The next day we went off in search of the legendary Forest Admonit, which grows only one place in the world – right next to Beit Jann. As you’ve probably guessed by now, these flowers were also waiting for the warm, dry spell that hadn’t yet arrived, so we made do with the less rare but no less beautiful flowers that graced the sides of Mt. Meron:

The next day we didn’t have time to stop on the way home, but enjoyed the drive thanks to Vivaldi, Mozart, Louis Armstrong, Judy Garland, and many others. I arrived home relaxed and happy, and ready once again to tackle the pressures of my non-vacation routine.

It's easy to miss out on life's most precious experiences if we’re so concentrated on our objectives that we don’t allow ourselves to notice and savor the process of reaching them. I’m sure that to the extent I remember to be mindful of, and thankful for, what I find on the route to my goals, I strengthen my resilience – and multiply my happiness.

More Kind Words About My Memoir

2011-04-02T10:09:00.000-07:00

Writers I know, especially authors of books, have told me that one reason they write is to start a conversation with people who read their work. I feel the same. I definitely see my writing as a way of reaching out; in particular, when I write I hope to initiate emotionally meaningful communcation with my readers. And so I'm always very gratified when (and this has happened many times), people tell me that my memoir (or, for that matter, anything else I've written, including posts for this blog) spoke to them personally and deeply.

Further to my recent post about Haim Watzman's reactions to my book, which he posted in the blog "South Jerusalem," Linda Gradstein, a former correspondent and current contributor to NPR (National Public Radio, for those of you who are unfamiliar), has also written very kind words about my memoir, and consented to have them publicized:

“In clear, moving prose, Susan teaches us all how to handle a burden that seems more than one person can bear. I couldn't put the book down. Sometimes it made me cry, sometimes laugh, and always it made me think. It is one of those books that you want to pass on to a friend as soon as you finish it.”

I'm grateful to Linda and to everyone else who has taken the time and effort to review Twice the Marrow publicly, or to express their reactions to me privately.

Kind Words About My Memoir

2011-03-31T12:55:00.000-07:00

Writer, translator, and journalist Haim Watzman (author of Company C and A Crack In the Earth) has written some very kind and thoughtful words about my memoir in "South Jerusalem", the blog he co-writes with Gershom Gorenberg (author of The Accidental Empire and The End of Days). The link is here:

http://southjerusalem.com/2011/03/sharing-pain-sara-avitzours-and-twice-the-marrow-of-her-bones/

Grief and Gratitude: Wildflowers

2011-03-25T07:24:00.000-07:00

A few weeks ago I wrote here about gratitude, and how much I love feeling thankful; I guess you could say that I’m grateful for my capacity for gratitude. Thankfulness is so much a part of my belief system, my emotional makeup and, come to think of it, my life, that I’ve decided to make it a regular theme in this blog. From time to time, starting today, I’ll go into deeper detail about specific aspects of my life that I count as blessings. Today I’d like to write about wildflowers.

Israel, so I’m told, has more species of wildflowers than any other country. Because we’re located at the point at which Europe-Asia meets Africa, a great number of the millions of birds that migrate every year between the two continents make pit-stops in Israel and leave behind their droppings, which contain seeds from wherever they originated.

Growing up in the city, I was nature-deprived (or, perhaps, green-open-space deprived; I did live right next to the beach). I longed for fields and forests; when I was in sixth grade I wrote a poem called "The Green Meadow, imagining what it would be like to go out into a meadow first thing in the morning, and to witness a sunrise. The second verse captured one of my recurring my fantasies: "The grass is green and sparkling/With drops of morning dew,/Everything looks young and fresh/As if the world was new."

So one of the miracles of my daily life for which I'm most grateful is that I live within such close reach of green-filled open spaces. And even more amazingly, wildflowers, which I never saw at all as a child.

Daniel shares my love for wildflowers, and often go out looking for them. Many times we plan our travel within Israel according to what flowers are blooming where, in whichever season we’re traveling. This past Sunday, for example, we spent the day near the Eila Valley, just wandering the fields, resting from time to time and looking closely at the flowers, leaves, and insects (gorgeous butterflies, fascinating beetles) that surrounded us. As often happens, at one point I counted more than twenty different kinds of flowers that I could see just from my place on the rock on which we were resting. This coming Sunday we’re driving to the Galilee for a few days, and will certainly take our Wildflowers of Israel book with us. (We’ll look for birds and insects too, and will be thrilled if we come across wild boars or other animals.)

Here in Jerusalem there are also a few fields whose intense green is thickly dotted with points of red, orange, yellow, white, pink, blue, and purple. One of these fields is right behind our synagogue, and in blooming season Daniel and I usually walk there after Shabbat services, in order to see what's new.

This year Daniel had an idea. During the winter, when the ground was still completely brown, we went to the field with a shovel and dug up enough earth to fill a window-box. We dug in several different spots, so as to capture as large a variety of seeds as possible. We put the soil in our planter and left it to the elements.

Our little "nature reserve" has become a source of real joy for us. First came green – the grasses, the grains, and the leaves. This itself was lovely; I'll never forget the morning I woke up to find my childhood fantasy fulfilled, in miniature: the sun was shining on one drop of dew on each tip of each blade and leaf.

A couple of weeks ago, these were joined by our tiny, deep-blue first flowers. A few days later, some of our buds opened to reveal five delicate pinkish-purple petals each; after that, another plant produced what look like little white star-bursts with dark green tips. Now a brilliant yellow sun is opening, smack in the middle of the box.

I think Daniel is right when he says that the advantage of having our own mini-field – besides being able to look at it every day – is that rather than visiting a field, looking, and leaving, we’re developing a kind of ongoing relationship with each of the flowers. We watch as they bud, open, reach their zenith and, eventually, return to the earth that nourished them – leaving behind the seeds that will bloom next year into their descendants.

In my memoir, I examined my bereavement in the context of Nature’s cycle of birth, life, death, and new birth, and found that there was comfort in reflecting on my loss in that light. Now, I get not only to consider that cycle but also to witness its miracles, literally, right outside my window.

Amazing.

Twice the Marrow Now Available in Bookstores in Israel

2011-03-24T01:50:00.000-07:00

My memoir, And Twice the Marrow of Her Bones, is finally available at Steimatzky bookstores throughout Israel. Twenty stores are now carrying the book, and it may be ordered at all branches.

In Jerusalem the book may be purchased at the following Steimatzky stores:
Jaffa Street
King George Street
Malaha
Mamila Avenue

It may also be obtained at Havruta on HaLamed Hei Street in Jerusalem.

Spread the word to anyone who may be interested!

New Feature: Follow My Blog by Email

2011-03-21T12:06:00.000-07:00

I've just added a gadget to this blog that makes it easy to "subscribe" - that is, to receive my posts by email within a day after I've put them up. If you're interested, just enter your email address in the space provided on the sidebar to the right, below the "About Me" section.

And Twice the Marrow of Her Bones: Now Available from Amazon

2011-03-20T13:23:00.000-07:00

Many people who've read my memoir, And Twice the Marrow of Her Bones, have wanted to recommend (or have already recommended) it to friends, and have asked where it can be found. I'm happy to say that Twice the Marrow can now be ordered on Amazon, with fairly quick delivery, as its official publication date was this past week.

Don't be put off by the notice on Amazon that the book is "temporarily out of stock." What this means is that Amazon has sold all the books it initially ordered. However, the publisher is now shipping additional copies as requested, so anyone who is interested can put in an order and it will be filled as soon as Amazon orders from the publisher.

Mourning and Meaning: Friends

2011-03-17T07:15:00.000-07:00

Grief is not exclusively “family property;” losing a friend whom we've loved is also a kind of bereavement. Although it’s not the same as the loss of a child or a sibling, a friend’s death presents us with similar questions: What does it mean that a person who was once very much present in our lives has left her own life? What does this say about our own mortality? And when our friend has died before her time, how can we draw meaning from that which seem so senseless?

Nehama Grenimann Bauch was Timora’s first friend; they first started playing when both were less than a year old. Our families live in the same neighborhood and belong to the same religious community, Kehillat Yedidya, and they were in the same class through eighth grade. Although they attended different high schools and drifted apart in adolescence, they became closer again during Timora’s last year. During Timora’s shiva, the first seven intensive days of family mourning, Nehama came and sat with us almost every day, some days for several hours. And not just to comfort us; she felt so bereft that she felt she needed to sit shiva herself.

Different people make meaning from traumatic loss in different ways. How we choose to do this depends, of course, on who we are, but also on the loved ones we've lost - who they were, and the special character of our connection. Nehama and Timora shared many things, prominent among them a creative and artistic nature. Timora was drawn mainly to writing, theater, and music, whereas Nehama excelled – and continues to excel – in the plastic arts, principally painting and sculpture. Both girls also inherited from their families a zeal for tikkun olam – the imperative to make the world a better place.

So it shouldn’t surprise that Nehama chose to process her friend’s death by combining these two passions – by initiating, organizing, and carrying out a project that has produced art that is both esthetically beautiful and practically useful. Faraway Places has brought together ten artists – Judith Margolis, Sharon Binder, Chana Cromer, Ruth Cohn, Anat Yefet, Galina Blaikh, Julia Lagus, Mallory Serebrin, Zoe Pawlak and Yulia Polyakov – who painted and contributed works that now grace the walls of Hadassah Hospital’s Intensive Care Unit. As I’ve written in my memoir, “patients who awaken [are] greeted not only by sterile white walls and ceilings, metallic IV stands, and cold machines, but also by warm, colorful scenes into which they can escape, in their minds at least, from the harsh reality of the ICU.” The staff has told Nehama that the art is making a tremendous difference both to them and to the patients and their families.

Nehama spent months and months dealing with and mediating among the artists, the hospital bureaucracy, the ICU staff, and the Young Hadassah branch of Hadassah International (through whom she organized the project) in order to get the paintings planned, finished, and onto the ICU walls. As if that weren’t enough, she spent many additional months working on the Young Hadassah Ball, which took place here in Jerusalem a week ago. Every year, the Ball brings hundreds of the organization’s members and supporters together for dinner and dancing, to raise funds for different departments in the hospital. This year – by chance but very fittingly – the money raised will be used to renovate and expand the Pediatric Department.

At the small ceremony that was held right before the finished paintings were hung in the ICU, Nehama spoke at some length about Timora. She said that she chose this way to perpetuate Timora’s memory not because she’s no longer alive, but because of who and what she was for Nehama during her life – an intensely creative soul who actively encouraged her friend (from the time they were four years old!) to become an artist.

Timora would have been very proud indeed to have her name attached to the lovely works that these generous artists have created, and to a project that is directly benefiting the two Hadassah departments in which she was cared for so long, so professionally, and with such dedication. And even prouder to be Nehama's friend than she already was when the two were together in this life.

When I think about it, though, perhaps I can say that she is proud, as she follows her friend's fortunes from wherever her spirit has finally come to rest.

Poems of Cautious Hope, in English Translation

2011-03-15T08:53:00.000-07:00

Timora's resilience was such that even after her cancer relapsed, and even after it began spreading rapidly, she still preserved her faith and her hope.

Her faith, in that she continued to pour her heart out to God, still believing that He might answer her prayers, even as she feared He would not:

All night I lay in bed and prayed to God.
I tried to gather myself from His hands crumb after piece
And again and again scattered back into nothingness.
I asked why,
I pleaded, “Enough.”
Such a small creature
Why should You mind
That I should be
That I should be as a human being.

And her hope, in that whenever things took a turn for the better, she dared to wish for her good fortune to continue, even as she feared it might not:

And again came the wave I’d awaited so long
Which I cried for, I moaned, bit my pillow and prayed
It lifted me high, brought me close to the rest
At the very last second before the too late
From the pit, from the suffering, the cold, chilly fear
My heart fainted before it, so glad to be near.

But I really don’t know.

Will it stay after all?

Before me tomorrow is closed, a dark wall.

There's irony for me in reading these poems now, when I know how her prayers and hopes ended. But my grief is also eased by knowing that her hope enabled her to face, again and again, unimaginable suffering and sorrow, and to find and appreciate happiness wherever and whenever she could.

Baby Resilience

2011-03-13T11:40:00.000-07:00

Grandchildren are perhaps the greatest of comforts to bereaved parents. Grief for a child who has left this world never ends completely, but its pain is greatly softened, and even sometimes forgotten – this is true for me, at least – when we spend time with our children’s children. As I've written in my memoir:

"It’s as if a deep pit opened up inside me.... I’ll never be able to fill the hole, but what I can do is build my life around it, continually adding meaningful relationships, work, and creative pursuits, so that the pit becomes a proportionally smaller and smaller part of my being. It’s still there, but it’s dwarfed by its surroundings."

My grandchildren certainly dwarf that pit.

Daniel and I have many times had the good fortune to host our oldest daughter Elisheva and her partner Tayir for Shabbat together with their son Imri, who is now twenty-one months old (Elisheva is Imri’s biological mother, and Tayir is in the process of adopting him). Two weeks ago we were even luckier, when the couple took a two-day vacation alone (their first since Imri was born) and left him with us. Besides the great fun we had with him, we also got a bonus – the opportunity to witness his budding resilience.

When they visit, Imri normally runs into our home as soon as we open the door, shouting “Ka!” (his name for me) and “Abba!” (his name for Daniel). When they arrived that Friday, though, he refused to walk in. His mothers hadn’t said anything to him – at his age there would be no point, as he can’t yet grasp a concept like “two days” – but he could tell something was up. Eventually they carried him in. It took about an hour before he was willing to stop clinging to Elisheva or Tayir, and to come to us.

When he seemed ready, they waved to him and said, “Shalom, Imri. We’re going for a trip now, but we’ll be back.”

“Lom, Mma!” he replied, waving, and turned back to put another block on the tower he was building.

Imri’s mood remained excellent throughout the weekend. I took him to synagogue Shabbat morning, as I always do, and he played, looked at his books, and went up and down the aisle flirting with everyone in the women’s section, as he always does. At home, he played with us, ate happily, and talked and talked and talked.

The first time he asked for his mother was when I was putting him to sleep Friday night. I said, “Eema isn’t here, but Savta (Grandma) is here, Sabba (Grandpa) is here, Ayala is here, David is here,” and so on, naming everyone who was with us for that Shabbat, including his two-month-old cousin Arielle. “Eema will be back tomorrow.” He calmed down right away and fell asleep. He asked for “Mma” again only another couple of times, when he was tired or fell down, and each time we were able to calm him quickly.

Don’t get me wrong – he didn’t forget his mothers. On Sunday, we explained that Eema would be back later. A short time afterward, we were playing in the living room when David came out of his room.

“Who’s that coming?” I asked Imri.

Immediately a huge smile lit up his face. “Mma?” he asked hopefully.

“No, it’s David,” I said. “Eema will come later.”

He looked at me seriously for a second, then went back to the book he was leafing through.

For a while after his mothers returned he wouldn’t get off Elisheva’s lap, or stop hugging her. I came to sit down beside them, saying things like, “Your Eema’s back! That’s so great for you!” At first he looked out at me a bit suspiciously from the safety of the maternal lap. But after a few minutes, he suddenly gave me a big grin. “Ka!” he said lovingly. Then he looked at Elisheva and said, “Mma!” Then again at me, “Ka!”

When we took the three of them out to dinner that evening, he sat happily next to me, smiling from time to time and saying “Ka!” in that loving tone. I melted every time.

Clearly, he wasn’t holding a grudge – at least while his mothers were there. But the real proof of his forgiveness came the next day, when they were safely back at home in Tel Aviv. Elisheva phoned me for some advice, and suddenly I heard in the background, “Ka? Ka!”

“He recognizes your voice,” she told me.

“Even when you’re the one talking with me?”

“Yup. He knows telephone voices from across the room.” We finished our conversation and hung up.

About an hour later, the phone rang. It was Elisheva again. “He insists on speaking with you,” she said.

She put him on and we had our usual conversation.

“Hello, Imriki?”

“Yes.”

“Did you call me?”

“Yes.”

“Did you call me to give me a kiss?”

“Yes.”

“So give me a kiss.”

He made a loud kissing sound and gave the phone back to his Eema.

I’m floored by Imri’s ability to stay with us and feel almost no distress, and to go back afterward to his normal life, free of anger. To me, this demonstrates a resilience rooted in the deep basic trust that he's developed through the loving and patient mothering he’s gotten all his life from Elisheva and Tayir.

I believe that resilience is one of the most crucial qualities we can nurture in our children. I'm sure that Imri's will stand him in good stead, throughout what I hope will be a long and eventful life.

Twice the Marrow: Reactions

2011-03-10T07:34:00.000-08:00

I've added to my reviews page a quote from Dr. Debbie Weissman, President of the International Council of Christians and Jews, highly recommending my memoir:

"While focusing on the author's deeply Jewish experience and perspective, And Twice the Marrow of Her Bones is inspiring to people of all faiths, or none. A must-read for both my Jewish and Christian students and colleagues."

Poems after Relapse, in English Translation

2011-03-07T06:31:00.000-08:00

In January I posted three Hebrew poems that Timora wrote after the relapse of her leukemia was diagnosed, as with the steady return of cancer's incomparable pain she began to lose some of her cherished independence.

As I wrote in my memoir, what stands out for me in Timora's poetry is her astounding ability to transform suffering into art. If you think about it, that is what all artists do, and Timora was a true artist.

Warning: The second and third of these poems are very difficult to read.

March 19, 1999
Don’t tell me,
I know by myself,
If I don’t do it
It doesn’t mean a thing,
Leave me.
Tell me,
Or I won’t succeed,
I won’t do it,
Help me.
Don’t decide for me,
I’m not a little girl,
I’m responsible for myself,
Leave me.
Protect me,
I’m scared like a little girl,
I can’t stand alone,
Help me.

April 11, 1999

It
is
spreading further and further
and
conquering every spot that had been free
Poisonous, black malicious
Snickering of devastation, of evil, of defenselessness, of some
dark power
Extending long and emaciated and terrible and destructive arms
that grow
like some horrible nightmare from which we’ve not awakened and we'll not
awaken
ever
And twist and twist
and distort
and deform
and hold on
Hold fast by the nails Hold and do not let go Hold fast and wound
And if it does not bring death it will bring destruction of some other kind
Because there are no few kinds (to each his own destruction) Here it’s
bringing

April 20, 1999
A black cloud of razor-sharp claws.
They scratch deeply into my flesh
If I ask who sent them, and why to me,
They continue to pierce in silence.

A black cloud of claws that wound.
They’ve pulled me toward pain’s abyss
I cannot scream out how evil they are –
After all, does a claw have a heart?

A black cloud of claws that rip.
A claw has reached my core
And there it tears off strips of my soul
And, giggling, discards them in slime.

A black cloud of murderous claws.
They’ve pulled me toward the great Pit.
But I’ve stood up to them and continue to stand –
I’ve yet to give in to despair.

I've yet to give in to despair. There it is - Timora's resilience, in her own words.

Last Poems of the Remission, in English Translation

2011-03-03T05:25:00.000-08:00

Leukemia is an insidious disease, whose effects - both physical and emotional - last well beyond the disappearance of its malignant calling cards, the cancerous cells that fill the blood and keep it from fulfilling its life-giving duties. Even when the cancer seems to be gone, and its treatment seems to be over, its victims - especially, I think, its child victims - are left utterly changed by the experience, and often find themselves strangers to the "normal" world.

These are my translations of two of Timora's Hebrew poems that I posted in January. She wrote these in the last months of her remission, when she was worn down from trying, repeatedly and unsuccessfully, to re-enter the life she'd left behind when she became ill.

November 30, 1997
And all
Has suddenly become gray,
All has faded,
All has darkened,
Now all that’s left is cold.
Bleary eyes
Are tired of wondering,
Why,
And for what,
How,
Until when,
All is finished for me.
Enough.

January 29, 1998
There’s a precious pearl hidden deep in my soul,
It awaits the arrival of he
Who has courage enough to dive into my soul,
And to gaze in my eyes, truly see.

For perhaps I am like a sea-shell from the deep,
Whose facade glitters not, nor intrigues
And whoever would thread it with filament fine
Needs a blade that’s especially keen.

Not a blade, but love that is tender and true
Will pry open this tightly-closed shell,
And although it seems hard, if only he’d try –
Only softness he’d find, smooth and still.

There’s a precious pearl hidden deep in my soul,
If you seek it, it’s right within reach.
But your eyes are shut tight and blind to the light,
They will never discern the true me.

There's little I can add to Timora's own eloquent words.

An Interesting Approach to Developing Resilience

2011-02-28T07:26:00.000-08:00

A few days ago, I received an intriguing offer, one that's quite relevant to this blog's central subject – resilience in its differing forms. It's for a bestselling book by Dr. Judith Orloff called Emotional Freedom.

Resilience comes in many flavors. What helps one person go on to a fulfilling life despite grief or tragedy may not necessarily work for another. One bereaved parent may find solace in religion and spirituality, while another process her loss by creating art, composing music, or writing stories, a novel, or a memoir. One person who’s experienced trauma such as a terror attack or a violent crime may turn to philosophy to try and make meaning from the horror; another may embrace social action. I’ve been examining here what works for me – including writing this blog! – and I’m also very interested in what works for others.

In my psychotherapy practice, I treat people who are facing difficulties such as depression, anxiety, and post-traumatic stress disorder, using cognitive-behavioral (CBT) and mindfulness -based therapies. The two approaches are quite different, but complement each other. CBT helps people to break unhelpful patterns of thinking and behaving, and to develop more realistic and helpful ones, while mindfulness teaches people to accept their inner experiences – whether these be thoughts, emotions, or physical sensations – in a curious, non-judgmental way. Some of what these approaches have in common is that both teach their adherents not to dwell on negative thinking, and to pay attention to the positive aspects of their lives. I’ve seen the results over and over – and, in fact, both kinds of therapy have been supported by empirical research – as client after client has developed what might be called their “resilience muscles.”

Dr. Orloff, a well-known psychiatrist who teaches at UCLA, has created her own unique method for developing resilience based on a synthesis of conventional medicine, energy medicine, and spirituality. Although its sounds very different from what I practice, some of its elements are quite similar to those of CBT (such as naming and facing what one fears) and of mindfulness (such as learning to be in the moment).

If such an approach interests you, you can get a taste from several videos that have been posted on YouTube. Here are a few:

Overcoming Negativity – Parts 1 and 3 of 3

Four Questions to Transform Fear

What is Your Emotional Type?

How to Stop Absorbing Others’ Energy

Emotional Freedom lays out Dr. Orloff's method in accessible and clear form and language, and has received very positive reviews in magazines such as Publisher’s Weekly. It’s now coming out in paperback; books may be purchased together with the special offer I received, which I’m reproducing verbatim:

EMOTIONAL FREEDOM: LIBERATE YOURSELF FROM NEGATIVE EMOTIONS AND TRANSFORM YOUR LIFE

UPLIFTING NEW YORK TIMES BESTSELLER BY Judith Orloff MD (in paperback now!)

Judith Orloff MD, a UCLA psychiatrist, presents her unique approach for viewing emotions as a path to spiritual and intuitive awakening. You'll learn how to stop absorbing other people's negativity and how to stay calm instead of reacting when your buttons get . Synthesizing neuroscience and intuitive/energy medicine, this book liberates you from fear—and the emotional vampires who suck you dry.

Purchase book plus get your "Embrace Joy" gift collection at http://www.drjudithorloff.com/emotional-freedom-paperback/

Full disclosure: I haven’t yet read the book, but I have seen the videos, and Dr. Orloff’s approach does look very interesting. So I’m sharing with you the opportunity to check it out.

Poems of Disappointed Love, in English Translation

2011-02-27T04:05:00.000-08:00

I've noticed that many readers have been interested in my post about the poems Timora wrote in 1997, when she was in remission from leukemia and fell in love for the first and only time. Sadly, her love turned out to be unrequited.

I posted the original Hebrew poems here; these are the poems as I translated them into English in my memoir:

May 31
It’s easy to say: “He’s found another?
It’s nothing, I’ll just move on,
I’ll not think about him any longer,
It’s not really so bad that he’s gone.”
It’s easy to say: “This is truly silly,
There are plenty of others around,
And he and I in any event
Wouldn’t find any real common ground.”
It’s easy to say, it’s easy to speak,
If there’s one thing I have it’s my words.
So why, when it’s time to put them to use,
Do I cry, though I know it’s absurd?

August 24
I don’t push
Don’t stand out
Don’t stand on my rights,
Don’t invent witty comebacks
Only stand
And suffer
And absorb
And miss out
Afraid to be a bother
Afraid to be judged
Self-confidence – about zero
Hopeless
Lost,
Slowly disappearing
Melding into the wall.
Trapped.
If I only had the courage
Just for a tiny moment
To raise my head
To look straight ahead
And say:
“I’m here”…

October 26
True,
She hasn’t loved him
For some time,
True,
Nothing remains from that old
Story,
And the fire has been quenched,
And the flame is dead,
And with it hope,
They’re all gone.
And with them
The glittering, blinding light saved
For the knight on the white horse.
But every time they meet each other
By chance, on the street,
Her heart fills with pain,
As if pierced
By a white-hot arrow.

Resilient as she was, Timora dealt with her disappointment by throwing herself into
a whirl of normal-life pursuits. But she never did get the chance to "find another" and experience the joy of a real, mutual romantic relationship. Somehow, this is one of the most wrenching of my many losses as a bereaved parent.

Love Poems and Life-Force

2011-02-24T07:49:00.001-08:00

I’ve been writing a great deal about resilience. So far I’ve reflected on what has contributed toward my own and other peoples’ ability to go on living full and even happy lives in spite of tragedy or overwhelming hardship; I haven’t yet touched here on Timora’s amazing resilience, although there's a great deal about it in my memoir.

As I wrote in my last post, Timora was a true writer, so it’s not surprising that the exuberant life-force that enabled her to bounce back from the extreme hardship she experienced in her young life is reflected in her poetry. These are my translations of the poems she wrote when she fell in love for the first, and only, time in her life, in the spring of 1997. She was in remission from her leukemia after two and a half years of intensive treatment and debilitating side effects – several months of concentrated chemotherapy, her first bone marrow transplant, and the Graft-Versus-Host-Disease that resulted from the transplant. She told me, when she came home from the Scouts trip where she met the boy, “I feel like I’ve gotten a glimpse of how life can be when I’m not sick – of the things I’ve been missing until now. Now I know there’s a whole world waiting for me, if I only decide to go out there and join it." And so she did.

The Hebrew originals can be found here.

April 4
Love
Purity of childhood
Innocence of youth
The truest, the best, the rightest
Thing of all
Won’t fit into a rigid frame
Of rules
Soul touching body
Childish, naïve
And so
Real
Angels’ touch
Bringing together thrilled
And amazed souls
Who discover
The truest thing
The most beautiful thing
Love.

April 17
How dark it all was,
Despair, fear, loneliness
Feeling like a third wheel in this world,
How the light came suddenly,
Hand and smile, innocent touch, love-giving
And it all changed,
Love
Can do it all.

April 20
I wake in the morning –
You float into my head.
Go to sleep,
With your name on my lips.
You are everywhere,
Fill me,
Do you also think of me?

Any bereaved parent will tell you that remembering their children through what they left behind is one of the most important - if bittersweet - ways of moving toward healing from their deep grief. I feel especially blessed that by turning her inner life into written words Timora left us so much of herself, and in such a beautiful form.

Writing and Resilience

2011-02-21T07:24:00.000-08:00

In one of my first posts since renewing this blog, Grieving and Sharing, I wrote about how reaching out to others who are experiencing (or have experienced) loss or other kinds of hardship has been healing for me. Writing my memoir, of course, is one of the ways I've done this, as is (for that matter) writing this blog.

I find writing to be one of the most effective ways of processing the traumas, surprises, and puzzles life has thrown my way over the years. But writing is more than therapeutic for me - the artistic process of transforming the bare facts of "what happened" into stories that can affect others satisfies a deep creative need. I neglected this need during the long period when I was developing my career(s) and raising my family. But in the past couple of years I've been catching up - participating in writers' workshops as well as one retreat and a year-long course, writing short fiction and creative non-fiction based (so far) on my own life. Part of me is terrified that after And Twice the Marrow of Her Bones there won't be any more - that my creativity has dried up - but I'm determined not to give up. In this, Timora is my role model.

Timora was very gifted in several branches of the arts - notably theater and music - but above all she was a writer. She wrote and wrote, no matter how ill, tired, or discouraged she felt, all the way up to the week before she entered the ICU for the last time. She had an extraordinary ability to take her experience of life and put it down on paper gracefully, beautifully, and movingly. She began to seriously develop her writing - especially her poetry - in ninth grade, when she was still suffering from the side effects of her first bone marrow transplant. The first really serious poem she wrote expressed, passionately but at the same time wistfully, her take on her life at that time:

I might have been now
A tranquil girl, with a smile on her face,
And not perpetually cross.
A serene and confident girl,
Who doesn’t fear every shadow.
I might have been now
A regular schoolgirl,
And a girl who returns home from school
With quick, light steps,
Without arriving panting and in pain.
I might have
Joined all the trips and camps
I missed and will go on missing.
Slept at night, with pleasant dreams,
Made peace with myself – no one’s perfect.
I might have
Had friends
Who come to my home and host me at theirs,
And all could have been self-evident,
And clear, that I truly deserve this.
I might have had something to do with my life,
Accepted love from my sisters
And finally stopped weeping
And have been fourteen and five months.
I might
Have
Been.

(The Hebrew original can be found here.)

I'm sure that Timora's ability to give creative expression to her inner life is part of what made her so resilient. If I find myself only half as able as Timora was to transform the stuff of life - whether it be grief, joy, fear, or wisdom - into art, I'll be eternally grateful.

Hebrew Poems: Timora's Last

2011-02-18T05:45:00.000-08:00

I've just posted Timora's last two poems, which she wrote just before her second bone marrow transplant, a bit more than a year before she died. It's hard to believe she wrote them only a week apart, they are so radically different. Although translations of both can be found, each in a different place, on my original blog, I'm reproducing them below, together.

They speak for themselves:

You’ve imprisoned me in a cold dark room
And I can neither stand nor sit
And my lying is uneasy
Hard and restless
And I cry –
Let me out
Or let me stand,
Or rest at least, or take away the cold
And if you can’t,
Please,
Open up a little crack
So I’ll know –
The world still contains a little light.
(November 5, 1999)

And why.
Why live.
Suffer.
Fight, struggle.
Why pull and pull like a wretched, miserable beast –
For what.
In loneliness, in darkness, in the cold.
How much have I asked, and how much will I ask
And I am not the only one
Not only when sorrow blinds the eyes like a veil of tears.
But within me I know
And sometimes, like a flame
The answer blazes before me –
Love.
(November 12, 1999)

Review and Revision

2011-02-16T11:31:00.000-08:00

Today I opened a new page that will contain excerpts from and links to reviews of my memoir. So far there have been two reviews, both very positive, and several more will appear in April, including in Lilith Magazine.

It's interesting to notice which aspects of the book different reviewers pick up on. The Jewish Press review, which appeared today, for example, emphasized themes connected with Judaism, and my struggle with my faith in light of life's cruelties. Perhaps not surprisingly for a publication with an almost exclusively observant readership, it portrays my views and feelings connected with this very difficult subject as more Orthodox than they are - one might say the review "revises" my attitudes just a bit - which only goes to show just how complex and highly charged these questions are.

I invite you to visit the new page, and the reviews it lists.

R&B and Resilence

2011-02-13T02:11:00.000-08:00

I first met Angela Bofill in seventh grade, when we both sang soprano in Hunter College High School’s Junior Chorus. “Both” is actually a funny word to use, because there was never really any comparing us. Angela was a wunderkind of a singer. When the chorus performed a few songs from Gilbert and Sullivan’s “Mikado,” Angela belted out Yum-Yum’s signature solo, “The Sun Whose Rays Are All Ablaze,” in a pure, rich voice it was almost impossible to believe originated in a twelve-year-old body.

I continued to dabble in music throughout high school – singing and playing the flute, doing well in my music classes and at the Third Street Music School – but in fits and starts, never mustering the self-discipline to make of myself anything other than a talented amateur. During those same years, Angela was moving full steam ahead into what was clear to everyone would be a successful singing career. In school, she started and starred in a group she called the “Puerto Rican Supremes;” outside school she became increasingly involved first in semiprofessional, then professional performance.

In twelfth grade, I had a let’s-get-serious-about music period and began bringing my flute to school every day. Angela noticed, and invited me into an instrumental improvisation group she was forming, together with Elaine Yoneoka (guitar) and Jane Levy (recorder). She was the group’s soul, providing both the ideas (I remember best playing a piece by the French impressionist composer Erik Satie that morphed, as we improvised, into jazz) and a solid body for our music as she played her heart out on the piano.

I lost track of Angela right after high school, but the advent of Google enabled me to check out her career trajectory. As we’d all expected, she became a professional singer, and amassed a fiercely loyal following. She recorded several albums, and was one of the first Latina singers to succeed in the Rhythm-and-Blues world; one of her songs made it to the top ten on the R&B charts. Her career peaked in the 1980s, but she continued to perform, record, and tour the United States as well as Europe in multi-artist jazz concerts. She even branched out into theater, appearing in several plays – including the intriguingly titled God Don’t Like Ugly.

Disaster struck in 2006, when Angela suffered a stroke that paralyzed her left side. To make matters worse, she didn’t have health insurance at the time. Her fans, friends, family, and fellow musicians stepped up and contributed, though, and celebrities held benefit concerts to pay her medical bills. She began physical and speech therapy and seemed on her way to recovering when, a year and a half later, a second massive stroke cut her down once again, and she lost whatever ability she’d regained to speak – and, of course, to sing.

When I read this news, I tried to imagine what it would be like to be Angela. To have spent most of my life singing, performing, doing the only thing I’d ever wanted to do, only to have my voice taken from me – and twice, at that. Many times, as I sang in my talented-but-amateur way for my own or others’ pleasure, I thought how hard it would be for me to lose that relatively small source of joy, and suspected that in Angela’s place I’d have sunk into depression and despondency, perhaps even lost my will to live.

I was wrong. Not necessarily about myself – thank God, there’s been no occasion for me to find out how I’d react to that kind of disaster (though Timora’s death has shown me that I can ultimately stand up to devastating loss). But about Angela, who's proved to be almost unbelievably resilient.

As it turns out, she did become seriously depressed after the first stroke hit, and after the second seemed to have given up on music. But with the encouragement of her manager and colleagues, she’s pulled herself out of the depths and begun performing again – without her voice.

She’s now appearing in a series of sold-out shows called the Angela Bofill Experience. The band – including the legendary flutist Dave Valentin – accompanies the young singer Maysa as she performs Angela’s hits. Angela sits on stage and tells stories in the broken speech that she’s once again, with hard work and determination, recovered. Most amazingly, she laughs. Two weeks ago, she told the Washington Post’s DeNeen Brown that in early 2006 her career was faltering. “I asked God: ‘Give me break.’ … That’s when stroke hit. Next time, God, maybe another break.” She joked about her hobbled syntax: “Me, Tarzan. You Jane.” And even about the stroke itself: “Only good thing I lose weight. A stroke diet. It works!” She calls herself a “sitting-down comic.”

I’m in awe of Angela. Not just for her talent, as I was forty years ago when she was already a serious musician and I was just playing at music, but for her courage and fortitude. She's another example of the kind of person I wrote about in my earlier post, Humor and Resilience, and gives me additional reason to believe that these two priceless qualities are inextricably entwined. Add to her playful humor a real passion for her art, and the love and support of those she cares for and who care for her, and you've got a good start on a recipe for resilience. I wish her health, strength, and the continued love of those around her. May she always be able to laugh in the face of potentially devastating loss.

Who are you?

2011-02-08T09:48:00.000-08:00

The stats for this blog show me that I have readers in countries where I don't know anyone personally - places like Russia Brazil, Canada, and most of Europe.

I would love to hear from readers I don't know personally. I invite you to leave a comment telling me where you're from and how you came to read my blog.

And, as I've told my readers who are also friends and family, I'd love to read any comment you may have on the blog's content. Part of my reason for writing it is to reach out, so please feel free to stretch your own hand out in return.

(Friends and family, I'd still love to hear from you, of course.)

Two More Hebrew Poems: Cautious Hope

2011-02-06T11:44:00.000-08:00

I've added two more of Timora's poems in the original Hebrew, written a little more than half a year before she died. Each poem, in its own way, is cautiously hopeful. The first describes a night spent praying; the very fact that she was still pouring her heart out to God tells me that she still believed it was possible He would grant her wish. She wrote the second soon after performing in her theater class's last production, when her life seemed to be taking a turn for the better.

Grief and Gratitude

2011-02-02T11:20:00.000-08:00

Grief and gratitude? Bereavement and thankfulness? Aren’t those contradictions in terms? I don’t think there’s a simple answer to that question. But I do believe that being able to be grateful for the good in life – even in the face of overwhelming loss – is a great part of what makes a person resilient.

Just about everyone enjoys having a reason to be thankful, whether for some kind of material well-being or for an emotional or spiritual comfort. I am certainly no exception; a difficult childhood taught me that I should never take what I have for granted. And I have so much. A good marriage, wonderful children, the incredible bonus of grandchildren, a close relationship with my sister and her son – it goes without saying that I thank God every day for my family. Friendship, attractive clothes, plentiful and nourishing food, comfortable shelter – even living in a small enough place to be able to enjoy the beauty and quiet of Nature whenever I have the time and the inclination – all these are incredible gifts.

Beyond the things I count as blessings, I’ve always loved the feeling of thankfulness – the visceral warmth that fills me when I reflect on the good in my life. I’ve found it to be an impressive antidote to the frustration, care, and worry. When I was the mother of five young children who populated an age range of just seven years, I sometimes – OK, I’ll admit it, often – felt as if my strength was giving out. Two of the girls, say, would be fighting, while a third was wandering through our three small rooms scattering a mixture of different puzzle pieces, a fourth climbing up the kitchen counter in order to get at the fruit I was saving for after dinner, and the fifth urgently needing to have her diaper changed. At times like this, taking a breath and remembering (for example) that I was lucky to conceive and bear children as easily as I could, would give me strength to go on, at least until the next crisis.

Even while our family was dealing with the myriad challenges posed by Timora’s leukemia, I was able to find reasons to be grateful. Timora’s doctor was outstanding, both professionally and as a human being. We belonged to a community that showered us with concern, emotional support, and any material help we needed. I even appreciated the fact that having a daughter with cancer simplified my priorities – if it was my day to take her to the hospital, it was clear that that was what I was doing that day, whatever other tasks awaited me at home or at work.

So you can imagine what a shock it was when my capacity for thankfulness seemed to disappear after Timora died. I couldn’t say “thank you” for anything. Grief and gratitude simply could not co-exist.

As I moved toward healing, my ability to be grateful returned – and expanded to embrace aspects of my life that I’d never thought of as candidates for conscious appreciation. Having had my existence turned upside down for so many years, I began to savor the small routines that, without thinking about it, I’d taken for granted before Timora became ill, and which were shattered after she died. As I wrote more than six years ago in the journal that makes up the second part of my memoir :

“In the past few weeks, I’ve finally started feeling that the rhythm of our family’s life is starting to return to normal, and that I’m in synch with that rhythm. The children are now busy with their own lives – school and friends and after-school activities. Don has his own career and interests. And on a day like today, I can go to work and be fully engaged in what I do there. I can come home and take a nap, and feel good about doing something for myself. I can sit and read and feel that I’m not wasting time – I’m just spending it pleasantly. And I can be with whichever members of my family are at home or on the other end of the phone line, and just enjoy them. Now, that is something to be truly thankful for.”

My capacity for gratitude has continued to grow, and recently has entered a new phase. Now, I spend some time almost every day actively seeking things to appreciate. I do this when some part of my life seems not to be working out as I’d like it to – something hurts, for example, or I feel I’m not making enough progress with a client, or there’s no train service to Tel Aviv just when I wanted to visit my grandchildren – and it gives me a sense of proportion, reminds me what’s really important. But sometimes I spend time cultivating thankfulness for its own sake, just for the fun of it.

If you think about it, there’s no end of things to be grateful for. I sometimes scan my body, going through every one of its limbs and organs – even each bone – and thank God they’re all whole and working properly; and that I have access to excellent health care when they're not. I can sit and savor my relationships with family, friends, and colleagues. I have my mental health – I’m not depressed, bipolar, or psychotic, and I don’t suffer from OCD, panic, or any other anxiety disorder (I count each one separately), or an eating disorder, or anything else in the American Psychiatric Association’s diagnostic manual. I have the strength to walk and close friends to walk with regularly. I work at a job I love. I live in a democracy, and enjoy a high degree of personal security. My marriage wasn’t arranged for me, and being a woman has not in the least limited my freedom or opportunities. I can go even further – no one is forcing me to work in a blood-diamond mine, I wasn’t sold into sex slavery at the age of six, or ten, or sixteen….

You get the picture.

In the end, I believe, my grief has actually sharpened my sense of gratitude. Losing Timora has made me intensely aware of life’s fragility – together with that of just about everything that gives it meaning and brings me pleasure. I could easily go through my days fearing further loss. But instead, I deeply appreciate the blessings that remain with me.

And I thank God for that.

Three More Hebrew Poems: Relapse

2011-01-31T07:18:00.000-08:00

I've just posted three more poems that Timora wrote in the first months after being diagnosed with relapsed leukemia. Translating them for my memoir was - like the poems themselves - difficult, but very meaningful to me.

Hebrew Poems: Last of the Remission

2011-01-27T07:23:00.000-08:00

I've added two more of Timora's poems to the page of original Hebrew poems that I translated for my memoir. She wrote them in the last months of her remission, when she'd discovered that re-entering the "healthy" world was much more complicated than she'd hoped and fantasized while she was in treatment.

Humor and Resilience

2011-01-25T06:32:00.000-08:00

Today I’d like to share with you a wonderful example of resilience that I recently encountered.

Last week I sat in the crowded waiting room of Hadassah’s surgical crowded daycare unit while Daniel underwent a minor knee operation (it went fine, and he’s recovering well). A sea of sound surrounded me: Arabic spoken softly into phones and between other patiently seated relatives; a Hebrew conversation a bit further away; alternating chatter and music from the television fixed above and to the right of my head; and erratic bursts of “gunfire” from a computer game a child was playing on the other side of the room. Cellular ring tones and announcements over the intercom occasionally punctuated the loud but strangely lulling hum. The words of the newspaper article I was reading were beginning to swim, and my eyes were starting to close of their own accord, when a sudden commotion shook me awake and made me look up. Two women had run into the waiting room after a young man of indeterminable age.” Walking with jerky steps, and loudly articulating seemingly meaningless syllables, the young man rounded the bend, dropped down to the floor a few feet in front of me, and started spinning around. “We’re not at home, Simcha,” the younger woman said as she took firm hold of his arms and guided him into a seat.

I got a closer look as the three sat down. The older woman, whom I’ll call Malka, looked to be in her fifties. Her open, good-humored face was well-tanned, and her moderate décolletage, good-quality jeans, and longish, blond-streaked hair placed her in the comfortable working class. Yaffa, her thirty-something companion, was somewhat more formally dressed, with silver hoop earrings emerging from her short dark curls. Both wore tasteful makeup. No family resemblance was apparent between the women, but despite his distored eyes, cheekbones, and mouth I could see that Simcha’s face was a copy of Malka’s. A look at the sticks that were his legs and his tiny feet made me wonder how he managed to get around on his own.

As soon as they were seated, Malka’s phone rang. She handed Simcha the phone. “It’s Eliezer,” she said, smiling. “Say hello.”

“A-oh,” Simcha said, grinning at the phone.

“Tell him you’re in the hospital.”

“Ah-in oh-i-al!”

“Tell him to bring you balloons,” Malka went on, and paused for a second before adding, “Tell him to bring balloons for five hundred shekels!”

All three burst into uproarious laughter. “I-uhn-e-el!” Simcha gasped into the phone, before succumbing to another giggling fit.

After Malka closed the phone, sighing and wiping her eyes, Simcha went on shouting partial words, which his mother completed for him before responding, interspersed with hoots and howls. He also barked occasionally. As he spoke, he gesticulated in a sign language that both women seemed to understand fully.

From time to time he sang. “Ta-too-ta,” he trilled, “ta-too-ta.” At one point he stood up in the middle of the room and gave a full performance, complete with coordinated claps, steps, and arm movements. Malka and Yaffa clapped along and smiled at him encouragingly – and proudly. I later learned that he’d sung “The Honey and the Sting,” a popular Israeli song asking God to preserve each aspect of our lives, whether bitter or sweet.

After he’d finished, he went back to his frenetic activity. Every few seconds he’d touch his mother’s face or arms, and every couple of minutes he’d jump up again and wander about or out of the room, occasionally throwing himself to the floor. Once or twice he crumpled a piece of paper, threw it across the room, and began to stamp his foot rhythmically. Each time, Yaffa or Malka retrieved him gently but firmly, always with a smile and often with a laugh. When got overexcited, Malka distracted and calmed him. Once, when he started pulling her hair too hard, she took him by the shoulders and said, “Here, let’s talk about ta-too-ta.” He happily took up the refrain.

The room’s other occupants – even the man sitting cheek to jowl with Simcha, absorbing an occasional poke – took him in their stride. Most ignored him, but many smiled sympathetically. As for me, it exhausted me just to watch Malka jump up every couple of minutes to make sure her son didn’t get into any trouble, and spend all the time in between amusing him as they sat together. Where did she get the physical and emotional strength? It seemed almost superhuman. What really struck me, though, was that from her face and manner it was clear that she thoroughly enjoyed her son.

After a while I went over to speak with her. She motioned to the seat next to her, which Yaffa had vacated when she took Simcha to the bathroom. I expressed my admiration for her upbeat attitude, and she replied, “Well, it’s hard, but we do what we can.” At my question, she explained that Simcha suffers from an extremely rare genetic condition resulting from a duplication of the twenty-second chromosome. “It’s so rare that no one can tell us what will be with him – how long he’ll live, what medical conditions he might come down with, how he’ll develop….” She smiled. “He’s still developing, you know.”

We spoke about her sense of humor. “That’s what our family’s like,” she said. “Whatever there is to laugh about, we find it. Simcha, too,” she added as he and Yaffa made their way back. He was singing again, giggling between lyrics that only he – and the select few – could understand. “I can see that,” I said quietly as I got up to give them their places back.

I spent the rest of the time until the nurse called me to the recovery room thinking about Timora, and how things would strike her as funny that others wouldn’t dare smile at. I write in my memoir, for example, that a classmate once warned her against eating a popsicle containing bright yellow food coloring. “What will happen?” her friend later told me she said. “I’ll get cancer?” Timora didn’t develop her sense of the absurd in a vacuum; our family, like Malka’s, places a high value on a good laugh, especially, I might add, as an alternative – and antidote – to despair.

I think that one “secret” that resilient people know is that laughing really is a lot more fun than crying – and healing to boot. If we can laugh at the sting together with the honey, at the bitter with the sweet – well, we can enjoy our own small lives, whatever Life (with a capital L) throws at us.

Three More Hebrew Poems: Disappointed Love

2011-01-21T05:54:00.000-08:00

I've just posted three more of Timora's original Hebrew poems, which express a real, and normal, adolescent experience - unrequited love. But as I write in my memoir:

"All teens take disappointment in love, especially their first, to heart. But in some ways the experience was harder for Timora than most. This brief relationship, whatever it had been in real life, had represented so much more for her than first love. Her glimpse of what life could be like was turning out to be a glimpse and no more."

As sad as they are, though, I love reading these poems. They are part of her legacy which, like all bereaved parents, I'm very, very grateful she left behind.

Hebrew Poems: Timora in Love

2011-01-19T10:29:00.000-08:00

Many Hebrew speakers who've read my memoir have asked to see the poems that I translated for And Twice the Marrow of Her Bones, in the original Hebrew. So I've just started a new page, on which I'll post the original poems. I've put up the first three - with more to come. You're welcome to take a look.

Timora wrote the first four of these poems during her remission from leukemia, when she fell in love for the first, and only, time of her life.

Grieving and Sharing

2011-01-16T10:26:00.000-08:00

In my first post, Grief and Resilience, I described how I wrote my memoir, and what writing it did for me. Today I’d like to talk about sharing my story of love and loss, and what that sharing means to me.

In both my original blog and in And Twice the Marrow of Her Bones, I wrote about the dilemma I find myself in when I come across parents whose children are being (or were in the past) treated for cancer. While Timora was ill, I was always hungry to share with anyone who knew what our family was going through. To this day, when I meet such parents I want to tell them I’m one of them, to speak and listen to them from a place of profound identification. But I can no longer do this, because they’d inevitably ask how Timora is doing. My answer would be the last thing they need to hear; my story is their worst nightmare.

I have no such problem when I meet bereaved parents; our worst nightmares have already come true.

When I meet someone who’s lost a child, our eyes instantly tell each other, Yes, I know. And so do you. All it takes is that mutual glance for us to feel as if we’ve known each other for years. There is no need for explanation, for words. But, paradoxically, because we silently know what we know, when we do speak our words bring us together, bridge the chasm that we sometimes feel separate ourselves from the rest of the human race.

My deepest sharing outside my family is with friends who’ve lost children; I’m sorry to say that I have more than one such friend. But I feel a connection with any bereaved parent, and am always ready to speak about what we have in common. A few times I’ve even reached out over cyberspace and corresponded with parents I’ve never met.

I wrote my book partly in order to reach out in this way to people in my position, to let them know they are not alone in the seemingly endless tunnel their lives so often feels like. I hope very much to show them that it is possible to pass through that tunnel and emerge into the light of a life that will never be the same, but a real one nonetheless.

I’ve recently begun sharing my story in another way as well. Twice now I’ve spoken to classes of social work students about my own experience and about my book, from my standpoint as both a parent and a professional. Each time, the students told their teachers that my talk gave them insights which will help them work more effectively with bereaved families. And each time a student approached me after class to share her story with me. The first, a young Jewish woman who had lost her husband (also to cancer), was very eager to let me know me she identified with almost everything I’d said. “No one in the class knows about this,” she said. “It’s a relief to be able to tell you about it.” The other, a young Arab woman whose lovely and gentle face was framed by a soft pink hidjab, told me that many years ago she’d lost a two-year-old brother. “Now I realize that I never understood what my mother went through when he died,” she told me, her eyes shining. “Your talk has made me understand.”

I can’t really say I’m glad to be reaching out in this way; I wish I didn’t have the occasion to do so, both for myself and for the other members of the “club no one wants to join.” But there’s no running away from the fact that I am a bereaved mother. So, as long as there are other parents out there grieving for their lost child, I see it as a privilege to be able to lighten their burden, if only a tiny bit, by telling them - in person, by correspondence, or through my book - Yes, I know. And so do you.

There's No Comparing Pain

2011-01-12T23:58:00.000-08:00

One phrase bereaved parents often hear is that we’ve suffered “the worst loss.” There is no denying, of course, that the loss of a child is one of life’s greatest tragedies. But although words such as these felt validating in the early years of my grief for Timora, I’m no longer sure what, exactly, they mean.

When my friend Jeff Green spoke at his son Asher's memorial service last Thursday, he touched on people's tendency to rate difficult and traumatic experiences in a hierarchy, as if A is always worse than B, which is always easier than C. There are even one or more official studies out there somewhere assigning each experience of grief a kind of trauma-rank – how bad is this variety of bereavement, compared to that kind? Some maintain that bereaved parents suffer the most; others declare that bereaved spouses and life-partners "outrank" parents – as if it were a competition of some kind. (There are also sub-ranks within categories; for example, parents who've lost an adult son or daughter supposedly suffer more than those who've lost babies or young children.)

Jeff said he believes there's no point in comparing between different kinds of pain. I completely agree with him.

I would be the last person to claim that all traumatic experiences hurt to the same degree. And Twice the Marrow of Her Bones chronicles my process of healing from the emotional agony that my daughter’s death caused me; nothing in my life had prepared me for such pain – even my father's sudden death when I was only fourteen. But I can weigh my inner experiences against each other, because I know what goes on in my own head, my own heart, and my own body. In contrast, another person might try to explain to me what she is experiencing, but all the words in the world won't put me in her place. So how can I presume to “compete” with others over whose losses are more devastating?

As a psychotherapist, and generally as someone who takes a keen interest in other people's lives, I hear a great many painful stories. What is one to make, for example, of this? A forty-four-year-old woman who finally found her life partner just a couple of years ago, is now pregnant – miraculously, to her – after having longed for a child for the better part of her life. But recently she’s learned that her unborn baby may suffer from a serious birth defect. The tests are inconclusive; still, her doctors have recommended that she terminate the pregnancy. She must now decide whether to follow their advice without ever knowing whether her baby would have been born healthy – and thus give up what might be her last chance to be a biological mother. If she decides not to have the baby, will her loss be easier for her than mine is for me? I, after all, have six wonderful children and two incredible grandchildren. Am I better or worse off than someone like her?

Closer to home, my sister Ruth’s wonderful, wonderful husband Jerry died of cancer almost eight years ago. She’s sometimes said to me that it would have been worse to lose her son. But Daniel and I have gone together through our mourning; Ruth, by definition, has had no one to share her bereavement. Can anyone say that one of our losses is harder than the other’s?

I believe that going through our own inferno should help us better understand the private hell of others; it can even bring us closer to them. When we begin comparing and contrasting, we only increase our alienation.

In my original blog, as well as in my memoir, I described a support group I attended for people who lost loved ones to cancer. I started off thinking I’d be able to connect only with the group’s other bereaved parents. Only they would be able to understand me, I thought, because our loss was so much worse than anyone else’s. Twelve meetings later, I came away having received an incredible gift – the discovery that I’d been wrong. As I wrote then, “however unnatural it is to lose a child as opposed to a wife, a parent or a sister, I can [now] give support to – and receive support from – people who aren’t in exactly the same position that I am. It may sound like an exaggeration, but I am completely sincere when I say that, at least in this small way, I feel as if I’m rejoining the human race.”

I found an almost unbelievable example of this empathic gift in my friend Charlotte’s mother, whom I had the privilege of meeting a couple of years ago just before Charlotte got married. Iboya (“Ibi” to the many who know and love her), who is now ninety, survived the concentration camps; no more need be said, I think, about the intensity of her personal traumas. Despite her many serious physical challenges, she vigorously encouraged her daughter to move to Israel in order to marry (she herself has perforce remained in Canada, where Charlotte travels to be with her every few months). I connected immediately with this open, loving and caring woman.

During the course of our conversation, she elicited from me the fact that I’d lost a daughter. Her already gentle face and manner softened even more as she said, “Oh, my dear. That’s the worst thing that could happen to a person.”

I drew back, stunned. “How can you say that?” I stammered. “You…but you were in Auschwitz!”

“Yes,” she said, waving one hand dismissively, as if shooing away the thought, “but that doesn’t take away even a little bit from what you’ve been through.”

I believe that Ibi’s capacity to truly see others is a central component of her resilience; it has played a great part in enabling her build a life full of strength and love despite the truly incomparable horrors she went through.

When we, like Ibi, can leave contrast, comparison, and competition aside, and relate to every individual’s bereavement, trauma, or tragedy purely on its own terms, we are one step closer to healing from our own.

Tapas and Tribute

2011-01-08T07:59:00.000-08:00

One thing all bereaved parents have in common is a need to memorialize the child we've lost. In both my original blog and my memoir, I tried to commemorate the Timora who lived for eighteen short but full years, and who left so much of herself behind. This past Thursday evening I had the opportunity, together with many others, to join my close friends Judith and Jeff Green in doing this for their son Asher, who was killed three years ago in a tragic hiking accident in Peru, at the age of twenty-eight. I found the evening a deeply meaningful way to celebrate Asher’s life while at the same time mourning his passing.

Asher was an extremely lively, inventive, and curious young man with an artist’s soul and more than his share of talent. He painted and drew, spent time in film school, and earned a certificate in theater design before settling on culinary arts as his calling. Like Timora, he left – in addition to memories of his unique self – an artistic and creative legacy.

The evening started with one of the gastronomic delights that Asher most enjoyed, a tapas bar – a wide assortment of light foods – which the guests sampled while circulating and socializing. (It was, I believe, no accident that Asher was attracted to tapas; the dishes’ variety reflects the multiplicity of his own interests and gifts.) The Greens served dishes Asher loved to make, in the warm and friendly atmosphere he'd dreamed of creating in the restaurant he hoped to open.

After we filled up on the twenty or so different offerings, we retired to the living room, where we watched several clips and short films relating to Asher, including a television interview in which he participated when he was sixteen; a film he made about Miriam Render, a friend of his who hasn’t let cerebral palsy prevent her from living a full and creative life; and his chef school presentation of his planned restaurant. We enjoyed his sharp intelligence, wit, and self-assurance, which made us laugh at more than one point during the viewing.

Our mood turned somber, though, as we watched the evening’s last film, which was made by Asher’s brother-in-law Ofer. It documented the several days that he and Asher’s brother Boaz spent searching for him, to no avail, together with a team from the Peruvian police’s high-mountain rescue unit (a villager later found Asher’s body, several weeks after he’d disappeared). One of the ways the Greens later memorialized their son was by returning to the village to present the rescue unit, whose members had risked their lives to retrieve Asher’s body, with modern climbing equipment. They also thanked the villagers, who'd been open, caring, and forthcoming with whatever assistance they could provide, by purchasing equipment for the village children’s schools. Like the evening itself, the Greens’ generous gifts were a singularly appropriate tribute to their openhearted son.

I was left thinking how the evening reflected the two faces of mourning. We keenly felt Asher’s absence even as we enjoyed the tapas that he so loved to make and serve. And, later, sadness overcame us when Ofer’s film showed us the wrapped bundle that had been Asher, as the rescue team pulled it up the mountainside. But at the same time, we took comfort in feeling the echo of his full-to-brimming vitality in his art, his films, his food, and – most of all – the love of his family and friends.

To me, Jeff and Judith’s ability to create such an evening expresses our human capacity for resilience even in the face of unfathomable grief. Without denying the emotional devastation that the death of their child has brought them, they have chosen to embrace his life. I believe that in doing so, they are also embracing their own.

Dedicated to Asher Green: May His Memory Be a Blessing

Grief and Resilience

2011-01-05T10:08:00.000-08:00

It’s hard to believe, but Timora died ten years ago today. My bereavement is ten years old. Ten years. How can I wrap my head around that number?

So much has happened in that decade that it feels like a lifetime. I’ve gone through and come out of the depression that gripped me for more than a year after my daughter died. I’ve turned my professional life around a hundred-and-eighty degrees by going back to school for a Master’s degree in clinical social work; I’m now officially an ex-attorney (I like to call myself a lapsed lawyer) with a flourishing career as a psychotherapist. Four of my daughters – all my children of marriageable age – are now married. My baby boy is now doing his compulsory military service (as a sergeant, no less). My second daughter has just presented Daniel and me with our second grandchild – a girl named Arielle, who’s joined her cousin Imri in his previously solo role as family darling. And I myself have produced – not another child, that’s no longer possible, but my first book, a memoir. And Twice the Marrow of Her Bones will become available online and in U.S. bookstores in mid-March 2011.

As far in the past as Timora’s death may feel, her life is so fresh in my mind that it also seems, if you’ll forgive the cliché, like yesterday. I’m sure this is partly because I spent six years writing about her. I started out with this blog, which I kept for a year and a half and ended on the fifth anniversary of her death. (The blog was then called “Five Years Later,” so it’s serendipitously appropriate that I’m taking up my virtual pen again today, almost exactly five years after publishing what I thought of at the time as my final post.) Writing my blog helped me process my grief in all kinds of ways. It gave me occasion to sit down and spend time remembering my daughter; to let the world know who she was; to look inside myself and face what I found there; to reflect on how what happened to Timora and to our family has colored the way I see the world; and to share my insights.

“Five Years Later,” baring as it did so much of my soul, became the first foundation of my memoir. As I wrote, though, I found myself turning from my own story to Timora’s, having realized that there was no way I could write what it was like to lose her without relating who she was, and what she went through. So as hard as it was to go back to that time so intensively, I made myself sit down and write, from start to finish and in chronological order, the narrative of her life as she struggled with her illness. In order to get it as right as I could, I read her diary, which I’d been unable to touch since she died. Like the survivors of battle, terror attacks, and terrible accidents whom I sometimes treat in my practice, I was avoiding fully confronting those long, wrong years. Reading the diary forced me to finally face Timora’s suffering, squarely and without illusion. And as it so often does for those trauma survivors, that confrontation opened me to further healing, but at a price – I had to allow myself to touch some of my deepest pain.

Yet my daughter’s diary also revealed something wonderful, in the literal sense of the word – just how amazingly resilient she was. One day she’d be in pain, depressed, lonely, and bored. Then – often the very next day – she’d write how a friend called, or one of her sisters invited her to a movie, or we began planning a family trip, and how wonderful life could be. This optimism, this ability to take even the smallest drop of hope and allow it to expand, to fill her whole being, floored me. A girl whose entire adolescence was devoured by cancer; a girl who underwent endless courses of chemo, a lifetime’s worth of radiation, and two bone marrow transplants; a girl whose body betrayed her in every possible way – that girl was able to find joy wherever she could, all the way to the end of her brief, brief life.

That resilience became the theme of Twice the Marrow, which combines Timora’s narrative with a journal based on my blog, painting a fifteen-year picture of our lives from Timora’s first symptoms up to the ninth anniversary of her death. The story I’ve written is not as much about the hardship she suffered, or about what life did to her, as about her determination to take what she could from life despite that hardship. And it depicts not only our family’s bereavement, but also – even more so – how we loved her, how we lost her, and how we’ve gone on living.

And so it is with this, my renewed journal. I hope to share here what I’ve learned about resilience – that stubborn refusal to let adversity get the best of us – both from Timora herself and from my own and my family’s experience mourning her. From my perspective now, beginning ten years after losing my child, I hope to reach out to other bereaved parents and families, to people who are facing the other, myriad challenges and trials that life inevitably throws at us all, and to anyone else who cares to share my continued journey.

Love

2006-01-10T07:45:00.000-08:00

Tenth of Tevet, 5766
January 10, 2006

This was the last of Timora's poems, with which she ended "Principally Poems," the collection of her poetry that she edited and arranged during the last year of her life:

And why.
Why live.
Suffer.
Fight, struggle.
Why pull and pull like a wretched, miserable beast -
For what.
In loneliness, in darkness, in the cold.
How much have I asked, and how much will I ask
And I am not the only one
Not only when sorrow blinds the eyes like a veil of tears.
But within me I know
And sometimes, like a flame
The answer blazes before me -
Love.

Timora Avitzour
16 Tishrei 5742 - 10 Tevet 5761
October 3, 1982 - January 5, 2001

May Her Memory Be A Blessing.

Eulogy

2006-01-07T10:09:00.000-08:00

January 6, 2001
Timora passed away peacefully about an hour before candle-lighting on Friday.

The funeral will take place on Sunday, January 7, at 14:00 at the Beit Hesped* of the Giv'at Shaul cemetery. The shiv'a** will be at our apartment.

Thank you all for your kindness and love.

With love,
Sara

*Beit Hesped – funeral chapel.
**Shiv'a - the seven days of mourning prescribed by Jewish tradition.

January 7, 2006

Eulogy for Our Daughter Timora
Timora, many, many people had the privilege of loving you. We, your immediate family, your extended family, your friends, your teachers. You were a warm and loving daughter, sister, granddaughter, niece, cousin and friend to us. We have no words to describe our deep feelings, now that you have been taken from us and this world.

We have no words – and yet at the same time, we have only words, and we hope with all of our hearts that you hear us from your new world, which truly may not be described.

Timora, we not only loved you, we admired you.

We admired your independence – your independent and intelligent opinions, and your desire and success in being and remaining yourself and only yourself, at every age and in every period of your life.

We admired your principles, and especially your sense of justice, which guided your opinions and your deeds.

We admired your merciful nature, and the respect that you gave to every human being as a human being, and to all creatures; you were unable to kill even an insect, for you would say, “We can't know that it doesn't have feelings like ours.”

We admired your bravery, when you would stand up for justice, as you saw it, even when your stand went against the mainstream, and even against people who were in a position of authority and power over you.

And we admired your strong and deep intellect, your never-ending creativity, and the sense of humor that did not desert you up to the end.

Timora, you could have been almost anything.

You could have been a doctor,
You could have been a poet,
You could have been a singer or a pianist or a composer,
You could have been a psychologist,
You could have been an actress, playwright or director,
You could have been a spiritual healer –

The list is endless. Timora, it hurts us very, very much to know that these things will have to remain in the world of the “could have been.”

What will we do with this thing –
You, who were so independent, were in the end so helpless;
You, who so loved justice, received from life such an unjust portion;
You, who were unable to take the life of any living creature, had your life taken from you so cruelly.

Timora, we have no words for our sorrow.
We are sorrowful that you had to use all of your courage in order to live with your so very bitter fate;
We are sorrowful that you were not given the chance to express even a small part of your intellectual ability and your vast creativity;
And we are sorrowful that in the end, you had to serve as an inspiration to us through your struggle, instead of inspiring us through the endless areas that belong, for you, to the world of the “could have been.”

Timora, we were privileged to love you, and we will continue to love the Timora who was full of life, who has remained in the heart of each and every one of us, and may whose memory be blessed.

I will read to you, in conclusion, a poem that your youngest sister, Ayala, wrote about you and for you.

Everyone Loved Her
Everyone loved her, everyone cared about her,
Her family, the girls to whom she was a counselor, and her friends, who still admire her.
Yes, this is Timora, in whose company we always wanted to be,
A rose petal that flew away, a flower that was plucked.
Timora, I will say only six words: if only you would return tomorrow.
But the Blessed True Judge has placed you by his seat,
So that when you get to heaven,
It will be better for you than if you were here.

I will never forget you:
Your little sister, Ayala.

(Translated from the Hebrew)

Sara Avitzour
Written and delivered at Timora's funeral
January 7, 2001

Release

2006-01-05T13:25:00.000-08:00

January 5, 2001
The contents of this message may be irrelevant by the time some of you get it; it is difficult to write an update under these circumstances, when things could change radically at any time.

Timora's blood pressure is extremely low, and her kidneys have failed. There is no longer any hope for her recovery, but we don't know how long she will go on living - it could end today, it could take a few more days. The state of being neither here nor there is very difficult for our family, but we are trying to go on with life as best we can. I still go once a day during the week to the hospital, and the other members of the family visit her when they can. She is now very heavily sedated - thank God, she is not suffering, and indeed suffering is over for her - and so chances are she doesn't know we're there, but still I believe that her soul can still feel a loving presence, and we want her to take that with her when she finally goes.

I feel now that death will be a release for Timora, and believe very strongly that when released, she will enter a mode of being that will be far happier for her than the life that she will have left behind.

Shabbat Shalom.

Love,
Sara

January 5, 2006

1. The Corridor

On one of Timora’s last days in this world, Edna, her Reiki teacher, came to the hospital to lay healing hands on her one more time. As Edna touched Timora and the energy flowed between them, Edna felt, through her fingertips and deep inside herself, that part of Timora’s soul was already on the way to the next world. But another part of Timora's spirit was lingering behind - hesitating to leave us because she was worried about us, did not want to cause us pain - but at the same time longing to be released.

As the energy between them intensified, Edna experienced herself as being together with Timora, in a corridor suffused with light unlike any she had ever seen or sensed. The corridor led toward an even stronger, more beautiful light, which could not then, and can not now, be depicted in words, but seemed to be the source, expression and richness of everything that is Good.

When Edna removed her hands and said her last farewell to Timora’s earthly form, she was left with a feeling that she can only describe as a kind of completeness, a fullness. This feeling, she says, has not entirely left her to this day, five years later. Timora gave her an incomparable gift: having experienced those few minutes of light together with Timora’s spirit, Edna now knows in the deepest sense possible that she has nothing to fear from the other side.

After her release (Edna tells me) Timora's spirit did not stay away for long, and soon returned to became a kind of spiritual guide and teacher for Edna. Every so often, she comes to Edna during Reiki sessions; Edna even sometimes asks her for help and guidance. When Timora comes to Edna, she adds her own spiritual energy to the currents of Reiki moving through Edna’s hands, making them that much more powerful agents of healing.

2. The Release

Six Wings*
With two you covered your face,
Which had bloated, then lost its flesh, then swelled again,
With a pencil you covered the eyebrows that had fallen with all your hair
Which grew back another color each time.
With a wig you covered the dent in your skull that was beautiful
To a small child.
And sometimes you didn’t know which was the real you,
Who had changed a thousand faces, her hair five times

And twice the marrow of her bones.
And with two you covered your legs,
Fragile from without and pressed ever more from within.
At night your legs moved of their own will and you found them no resting-place,
And in daytime they could no longer bear you.
In their place you grew wheels,
On which I wheeled and wheeled you, to the end
Of the universe, and up and down the hospital elevators, whistling and dancing,
Crazy Daddy. But to the end of terror

You rolled alone.
And with two you flew and collided, fell and flew again,
Bound with long and tangled tubes,
Embracing and withdrawing
Welcoming and chasing away
Cursing and blessing
Sinking
And ascending, now without legs, and without a face,
And with one pair of wings.

(Translated from the Hebrew)

Daniel ("Don") Avitzour
Written for the second anniversary of Timora’s passing
10th of Tevet 5763

*See Isaiah 6:2.

Light

2005-12-31T11:27:00.000-08:00

December 22, 2000
Timmi's condition unfortunately worsened over the past week. On Sunday when I was there she was close enough to consciousness to nod/shake her head three times in answer to my questions. She immediately went back to hyperventilating, however, and so the staff increased her sedation somewhat.

On Monday morning, her lungs looked worse in the x-ray, seeming to indicate respiratory distress. Because she seemed to be struggling so much with the various kinds of light anesthesia that had been tried, and because there was no question of taking the tubes out with her lungs in worse condition, she was put into deep sedation with morphine. Then, later that day, the stuff hit the fan and she went into septic shock. Her body temperature, pulse and blood pressure all declined rapidly, and she was returned to fully machine-assisted respiration, sedated yet more deeply and again given a drip of a medicine to stabilize her blood pressure. In addition, she was started again on a wide range of antibiotics to combat the sepsis. Her condition was defined as somewhere between serious and critical.

Tuesday and Wednesday she was stable, with no improvement and no deterioration. Today (Thursday) there was a slight improvement, with her x-ray looking a little bit better, and with a lower dose of the blood pressure medicine. In addition, some of her breathing is again spontaneous, although that may be because she is breathing faster than the machine's pace. Still, even a small improvement is movement in the right direction.

We sure need a lot of patience. Thank you all for your prayers and love.

Shabbat Shalom to all, and may this Chanukah bring all of us a much-needed measure of light.

December 28, 2000
There is no change in Timmi's condition, nor has there been for a long time. Her lungs are not improving.

At this point it seems that what may be done for her, has already been done.

At this point, what happens is up to God.

Shabbat Shalom to all.

Love,
Sara

December 31, 2005: Seventh Night of Chanukah
Chanukah is called the “Festival of Lights.” The story of its miracle is well-known: More than 2,000 years ago, the Jews returned to their Temple, which the soldiers of Antioch’s Hellenistic empire had defiled during their war with the tiny Jewish nation’s freedom fighters. Seeking to relight the Menorah,* the priests found a small quantity of oil - enough to last only one day. But seven days would be needed to purify the additional oil that would keep the flame burning. Nevertheless, the priests lit the Menorah as soon as they found the oil. Perhaps in response to this act of deep faith, God caused that small jar of oil to burn miraculously for eight days, so that the Menorah’s perpetual flame did not go out again until the Romans destroyed the Temple two centuries later.

The Torah teaches us that light was God’s first creation. And light is indeed one of our universe's main foundations. The speed of light defines the relationship between the building blocks of the physical world, matter and energy. It is the sun’s light that makes life on Earth possible. And when we look up into the heavens, we see the billions and billions of stars that fill the universe, whose light reaches us over unimaginable stretches of time and space, and whose distance from our own world we measure in light-years.

Light also figures large in the language we use to speak of the spiritual realm. Jewish mystics, for example, have described the physical world as hiding “sparks” that broke away from the Divine unity during that first act of Creation. These sparks are now scattered throughout the material universe, but long to return to their original unity; a Jew’s purpose in life is to “repair" our shattered reality by restoring the sparks to their Source through mitzvot and Torah study. And people of all religions who have “returned” to life after a few seconds of clinical death universally describe their experience as being drawn toward a great light.

How can I even try to speak of these things - of the relationship between God and our souls, in this world and the next? Human language can never be equal to the task of describing the world of the spirit, and words can give us no more than a hint of the truths they seek to reveal. But as I said in my very first post, words are all I have to help me try to comprehend things that are really beyond human comprehension. And I feel that I must at least do my best to understand; so as poor as my language is, I'll try:

In my own private metaphor, God did not stop at creating the light that marked the beginning of time and space. Every time He fashions a human soul, He endows it with a new and unique spark. This tiny bit of light makes us who we are, and enables us to connect with our Creator during our journey through this life. And when we leave the material world, the sparks of our souls are reunited with the Divine light that emanates from God, expanding and intensifying that light as it beckons the human spirit to itself.

When parents bring a baby into the world, we become God’s partners in His renewed Creation. By giving us a child, He charges us with the duty and the incredible privilege of nurturing this new being and its own matchless spark of light. But we are not given to know when our child’s soul will be called back to its Source. That is entirely up to God. And so giving birth to a child, raising her, and loving her demands of us the same depth of faith that it took to light that day’s worth of oil in the Temple, that first Chanukah so many years ago.

Timmi’s flame lit up our lives not for eight days, eight months, or eight years only. God allowed it to shine on us for eighteen years, three months and two days.

May He grant me and my family the courage and strength to continue our own journey through this life with faith and with love, until our own sparks are joined with Timmi’s in their final reunion with the Divine Light.

*Menorah – the seven-branched candelabra that is meant to burn perpetually in the Temple.

Telling

2005-12-23T01:01:00.001-08:00

December 16, 2000
Timmi's condition has not really changed for the past week. She is still under general anesthesia, and still attached to a respirator on breathing support. My understanding is that her X-rays, as well as an ultrasound, have showed no further improvement after the improvement of the first few days, but no deterioration either. She is still attached to a tube that drains the fluids that keep building up in her lungs (or would, were it not for the tube).

Several times the doctors have tried to wake Timmi in order to get her off the oxygen tube. In order to take the tube out ("extubate" her), it is important that she be fully awake and lucid, so that she can cooperate when told to breathe a certain way, cough etc. However, when she is disconnected from the anesthesia and starts to wake up (this can take several hours, by the way), she starts to hyperventilate, either from the panic at awakening to find herself full of tubes, some of which feel like they are choking her, or for some other reason I don't understand. When she hyperventilates, her oxygen level drops sharply, and because she doesn't respond when told (including by me) to try and take slow, deep breaths, she needs to be re-anesthetized in order to stabilize her breathing. So there it is - Catch 22. It would be good if there were a way to calm her without putting her to sleep, but even without narcotics or anesthesia, Timmi has recently been very sleepy, to the point where it has sometimes been impossible to wake her at least for several hours. So any tranquilizer or similar drug she gets puts her to sleep.

I have been there a few hours every day this week, talking to her, singing to her, putting earphones on her head with music, and talking to the medical staff in order to try and get a handle on what's happening. This whole business is, of course, extremely exhausting, although we do have the comfort of knowing that she is not suffering, at least for the moment. On the other hand, we are very worried about what things will be like when she does wake up - it may take a while to extubate even after she is awake, and Timmi's ability to suffer that kind of thing is by now extremely limited. Not to speak of the general condition to which she will "return", and the question, given her extremely damaged immune system, whether and when this will simply happen again.

As for what caused this to happen, all of the tests have so far still come back negative, so the working assumption is still that she has pneumonia from some kind of weird virus. It is now known, from tests, that the respiratory failure was not caused by the leukemia. Cold comfort; most likely the GVH, which apparently is keeping the cancer at bay, also damaged her immune system, leaving her vulnerable to this kind of infection.

Don was home this Shabbat (the plan was for him to sleep at the hospital only if she is truly awake by Shabbat). We requested that the staff call us if they manage to wake her during Shabbat, so that Don would be able to go there then, but they didn't call.

Shavua Tov to all.

Love,
Sara

December 22, 2005
I’ve always been relatively open; some would say too open. The updates I sent to my community and this blog itself are, I suppose, evidence of this. This is especially so in my relationships with people I care about. If some people are compulsive liars, I guess you could call me a compulsive truth-teller. Doing otherwise makes me feel somehow fake, as if I’m engaging the other person in a relationship under false pretenses. I know this isn’t rational, but it’s me.

When Timmi became ill, many of my beliefs and life-choices were challenged, not least among these my need to be open with those I love.

One day, I was having lunch with Timmi in the garden of a café in our neighborhood. It was the summer before Timmi’s relapse was diagnosed, and she was enjoying the last weeks of her official remission. Suddenly, she asked me, “If you knew I were going to die, would you tell me?”

I immediately went into mother’s alert mode; this was going to be a very crucial conversation. “What would you want me to do?” I asked her. “No, I wouldn’t want you to tell me,” she replied. “It would be too scary.”

Now, if I were going to die anytime soon, I would certainly want to know. I’d want to finish what I could, do my best to secure my children’s future, heal any of my relationships that need mending, and take my leave of those I love in a way that will prepare them, as far as possible, to deal with my death. But I’ve been permitted to live the most important part of my life – I’ve lived in partnership with the man I love, raised children, and had the opportunity to contribute at least part of my share to the world around me. Timmi, on the other hand, had not yet had the chance to do any of these things, and so it was natural that the thought of knowing that her turn would never come was overwhelming.

I later learned just how frightening Timmi found the idea of dying, when we found “Principally Poems,” the collection of her poems (in Hebrew) that she’d edited during the last year of her life and organized according to date. Shortly before her second transplant, she wrote the next-to-last poem in this collection:

You’ve imprisoned me in a cold dark room
And I can neither stand nor sit
And my lying is uneasy
Hard and restless
And I cry –
Let me out
Or let me stand,
Or rest at least, or take away the cold
And if you can’t,
Please,
Open up a little crack
So I’ll know –
The world still contains a bit of light.

That day in the Garden Café, I spoke with Timmi about how it would be to hear that she had only a short time left in this world, and how it would be not to be told. I promised to do whatever she decided, although I couldn't promise that she wouldn't be able to know from my face that there was something terribly wrong. As we spoke, Timmi realized very quickly that my promising not to bring her the bad news would be as problematic as my promising to tell her. If I promised to keep from her my own knowledge that she was going to die, she would never be able to feel secure – perhaps the doctors had told Don and me that there was no more hope, and we were keeping it from her? But again, the thought of us coming to her with such news was so very scary.

As we went back and forth on the subject, I was suddenly able to see it in a new light. I pointed out that if I were to “know” that Timmi was going to die, I would be aware of this only because it had become clear that all her medical options had been exhausted, and that she still had cancer. But from the very beginning we had always involved Timmi and kept her informed of all the details of her medical care, and so in such a case she would also be aware that there was nothing left to try – and the question whether I should tell her would be irrelevant. Timmi accepted this, understanding my point, and didn’t need to go any further into the issue.

I never did have to decide whether or not to bring Timmi the news she dreaded more than any other. This was not because she knew it anyway, as we had discussed over lunch in the garden, but because when she was sedated just before being rushed to intensive care, no one knew that she would never awaken from her sleep.

During the last months of Timmi’s life, I sometimes imagined how she might leave us. In my mind, I saw us all at home. I saw myself lying in bed together with Timmi as she drew her last breath in my arms, surrounded by her family’s love. I wanted so much to give her that last blessing. In the end, the scene was quite the opposite; Timmi spent her last days and minutes in a deep coma, attached to a million tubes in a hospital room in which her parents were not allowed to sleep with her. This was the scene I'd always feared the most. But as it turned out, it was a blessing after all.

Timmi never had to know that she was going to die – whether from our bringing her the news, from the faces of the people who loved her, or from her own understanding that there was nothing left to try that might keep her alive at least a bit longer. She never needed to face the “cold dark room” that had haunted her poem. Until the very end of her conscious life she was able, like any other girl her age, to laugh together with the people around her, to think about boys, and to dream about the life she wanted for herself when she grew up.

Timmi died blessed by the belief that she would live.

Hope: Timmi's Story

2005-12-15T07:59:00.000-08:00

December 10, 2000
Unfortunately, Timmi is not out of intensive care, as we had hoped. An attempt was made on Shabbat to wake her in order to remove her tubes, but her breathing was not and remains not good enough for that. Today a very large quantity of fluid was again drained from one of her lungs, and sent to every conceivable laboratory; so far all of the tests have continued to be negative. Professor Cividalli, her oncologist, says that "the picture is very strange". But Timmi's "picture" has been very strange for a very long time now, so we are more or less used to that.

Besides her lungs not really improving for several days, her kidney and liver functions have gotten somewhat worse. As a result, some of the medicines she had been receiving were discontinued. One improvement over last week, though, is that she is now no longer fully mechanically respirated - her breathing is spontaneous but "assisted" by the machine (40% oxygen, for the doctors out there).

Now that the "fuller" lung has been drained (actually there was still some fluid left but obviously much less than previously), there is a chance that tomorrow another attempt will be made to take out the tubes and wake her up; the doctor with whom I spoke said that is still the direction in which they hope to move.

If I may make a request, please do not ask me individually what is happening on the intensive care scene. I know how worried many of you are, but I promise that I will give updates when my strength and presence of mind will allow. If there is any significant improvement, I will certainly make an effort to let you know as soon as possible following the improvement.

Love to all,
Sara

December 15, 2005
In my last post, I wrote about how hope sustained me throughout Timmi’s illness, and how it did not disappear even when I “knew” that her death was imminent. The story of Timmi’s hope is even more remarkable.

Timmi decided to take an optimistic view of her illness from the very beginning. I remember vividly how, when we first got the diagnosis of cancer, Don and I entered her room, sat down on each side of her hospital bed and closed the curtains around us for privacy. Don told her that the doctors had found some cancerous cells in her bone marrow. At first she didn’t quite understand what that meant. A few cells? We explained further. When she understood that those few cells meant that she had the disease called cancer, she cried, but only a little. Then she said, “I am absolutely, one hundred percent sure that I am going to get out of this totally healthy. There’s no question in my mind.”

I was very grateful for Timmi’s fighting spirit, both because I believed that her attitude would make the illness emotionally easier for her, and because I’d read that “fighters” are more likely to survive cancer. I suppose I shouldn’t believe everything I read, but the fact is that believing that Timmi’s optimism would help increase her chances of getting better helped both of us cope with a totally new and incredibly overwhelming situation.

During the course of her illness, Timmi’s moods were even more unstable than a healthy adolescent’s. For one thing, she sometimes needed to take steroids, which prevented her from sleeping and magnified any emotion she was feeling at the moment. In addition, she often got very tired – and angry – at having to be a cancer patient rather than a "regular" kid. Sometimes she even despaired of ever having a normal life. Sometimes, like all teenagers, she thought about death, and there were certainly times when she feared it (see "Choosing Life," July 2005). But even in the hardest of times, her hope never deserted her completely.

Timmi even expressed to me, many times, her feeling of gratitude that things were not worse. “Look at the other children in the ward,” she said more than once. “Some are going blind from brain tumors, some are disfigured by growths on their faces, some are as small as kids five years younger. I just need to get through these treatments, and then I’ll be able to go back to a completely normal life. I’m really lucky.”

I was with Timmi for her last evening in the pediatric ward, before her turn for the worse required her doctors to put her into the sleep from which she never awakened. She was feeling quite bad that day and had little strength to concentrate on anything. I was trying to keep her amused by watching television with her and making funny comments, when the nurse came in and said there was a young man outside the room who was asking to speak with Timmi. I went out, sighing. Surely this would be yet another of the “do-gooders and well-wishers,” as Don calls them, who come regularly to visit the pediatric ward.

I should explain here that the last people Timmi ever wanted or needed around her in the hospital were visitors who were neither family nor close friends. The children’s ward at Hadassah Hospital in Jerusalem has a very large staff of medical, paramedical, educational and therapeutic professionals. Hadassah is a teaching hospital, so on any one day Timmi could receive visits from residents, interns, medical students, professors and doctors visiting from abroad, sometimes in large groups. There were the nurses and the technicians, who took blood, hooked her up to the IV and to any other necessary machines, and administered her medication. Then there were the psychiatrists, psychologists and social workers, as well as an array of music, art and other arts-based therapists, all of whom wanted especially to work with our talented daughter (or so we were informed by the head of pediatric psychiatry). There were also the volunteers from Zichron Menachem and other organizations dedicated to helping children with cancer and their families, who by arrangement with the hospital visited the children every day, designed and conducted activities for them, and played with them or gave out presents.

On top of all that came the well-intentioned do-gooders. The hospital management would sometimes bring around groups of donors, actual or potential, so that the philanthropists could see their dollars at work. (Once, when such a group came around, the nurses went nervously from room to room, asking that the children try not to cry or scream during the group’s visit, so they wouldn’t give the visitors a bad impression!) The ward even “hosted” groups of teenagers, who came around as part of their education or consciousness-raising or whatever. (I remember one group of American kids who came as one stop on their tour to Israel; they looked into the rooms and distributed cheap, silly toys that their tour guide - or “educator” or whatever - had apparently encouraged them to buy for the poor little patients.) Individual men and women would also come to the ward, wanting to read to Timmi or bringing her treats for Shabbat or for whatever holiday was being celebrated at that time of year.

Timmi valued her privacy very highly, and these visits often disturbed her, although she did her best to be polite. So Don and I learned to keep a sharp eye out for the well-wishers, and to steer them away from her bedside.

That evening, I went to look for the young man who had come to visit Timmi, prepared to politely but firmly ask him not to disturb her. I found a good-looking young man who looked about Timmi’s age. “Hello” he said, and introduced himself. (I wish I could remember his name; here I’ll call him Jonathan.) “I’m a first-year student at the medical school here.”

Guessing that I was puzzled why such a young person would be studying medicine, he added that he was enrolled in the Atuda, a pre-military program through which students are allowed to attend university and complete their degrees in professions such as engineering and medicine before entering military service, in return for committing themselves to remain in the IDF and work in their fields for a number of years after finishing their compulsory service.

“As part of my program, I’m required to volunteer for a certain number of hours every week,” he explained. “I’m doing my service right here in the pediatric ward, visiting the patients.” “I’ll ask my daughter if she’s up to having company,” I told him doubtfully. I went back in the room, expecting Timmi to ask me to tell Jonathan to go away, but when I explained the situation she surprised me by saying, “Sure, tell him to come in.”

The two of them discovered very quickly that they had a great deal in common. Timmi was 18; Jonathan was 19. She’d been a counselor in the Religious Scouts; he’d been a counselor in B’nai Akiva, another religious youth movement. They were similar in a more unusual way as well: both were not only religious, but at the same time held a politically and socially liberal world-view – a rare combination in Israel. They spoke of the music they liked to listen to, and generally about their interests and pursuits. Jonathan was incredibly sensitive to Timmi, and knew how to “go with the flow” while speaking with her. From time to time Timmi had to stop talking, because she suddenly felt weak or because something began to hurt. When that happened, Jonathan simply sat quietly and waited until Timmi was ready to begin speaking again. At each pause, I expected that Timmi would say that she didn’t feel well enough to go on, but she rallied every time and continued the conversation. I sat amazed, as Jonathan and Timmi went on talking for about an hour. It seemed like it had been forever since Timmi was able to concentrate on anything for such a long time, let alone make the effort to keep a conversation going when she was feeling so weak.

When Timmi really was too tired to go on, Jonathan took his leave. “What a sweetie,” she said to me, smiling, after he left. My heart skipped a beat. I was extremely happy, on the one hand, that she’d enjoyed the evening so much. But at the same time I couldn’t help feeling a deep sadness as I thought about what might have been, had Timmi and Jonathan met under different circumstances. Perhaps he would have been her b’shert, the one with whom God meant her to spend her life.

I wish I could remember every word of that beautiful conversation. I would write it down and keep it with Timmi’s photos, drawings, poems and stories. I can’t. But she said one sentence that remains crystal-clear in my memory, and that will always embody for me the incredible strength and endurance of her power to hope. There she sat in her hospital bed - after her strength had been steadily leaving her for weeks, if not months – surrounded by beeping machines and connected by a tube in her chest to her lifeline of nutrition, medications and blood parts; there she sat, speaking earnestly with Jonathan. After one of the many long pauses in the conversation, Timmi looked up at this lovely, gentle young man and smiled radiantly.

“I’m also thinking of becoming a doctor,” she said.

Hope: My Story

2005-12-10T08:23:00.000-08:00

December 1, 2000
I wish I had a better report to send you. Except for Sunday, which was a very good day for Timmi, she has been feeling quite horrible, both physically and mentally. For the last few days of last week we attributed her state to the fact that on Tuesday we removed the last narcotic patch (which in and of itself is actually good news), and believed she was experiencing some of the symptoms of withdrawal. This seemed to be confirmed on Sunday, when on the fifth day after the removal of the patch she felt significantly better, even ate a small amount and kept the food down. But Monday she felt terrible again, and it has not really let up since. She is quite weak, sometimes needing to get around even in the house with a wheelchair, dozes off during the day but can't really sleep at night (even if she hasn't slept much the previous day), vomits two or three times a day (including at night, which is a new phenomenon), experiences various pains in various parts of her body and finds it hard to concentrate on doing anything. This situation, not surprisingly, depresses her and sometimes she feels quite desperate about it. Such a long time and no end in sight.

It has been suggested that at least some of Timmi's symptoms may be explained by neurological problems, and next week we will discuss the possibility of further tests next week, with her oncologist. She has been tested neurologically several times in the relatively recent past, but there may be more extensive tests that may be done.

It is terribly frustrating to Don and me not to be able to do more for her. Sometimes it feels to me, at least, as if I can't do anything at all for her, other than "maintenance" - giving her her medications, taking her to the hospital, connecting her to her TPN (the intravenous nutrition). I know how frustrated many of you are by your inability to help us - so we can all understand each other. This, of course, is of some help to me but none to Timmi.

I hope my next update will be more upbeat. In the meantime, Shabbat Shalom.

December 8, 2000
Timmi is now in intensive care, and has been for the past two and a half days. She entered the hospital Motzei Shabbat because of extremely frequent vomiting and a low fever. Her condition did not particularly improve on Sunday or Monday. Then, Monday night, her fever shot up, her blood pressure dropped and she started having serious trouble breathing. Tuesday morning a very large amount of fluid was drained from one of her lungs, and by the middle of the day she was in intensive care for respiratory failure, as even with an oxygen mask she was not getting enough oxygen.

Since mid-day Tuesday, she has been on a respirator, and under general anesthesia. (At least she is not suffering.) The X-ray of her lungs looked a bit better yesterday than it did Tuesday, and a bit better today than yesterday. Likewise, she has needed progressively less oxygen yesterday and today. On the other hand, her blood pressure is still not stable without a constant drip of adrenaline, although she is now getting a somewhat lower dose than she got at the beginning.

She will remain anesthetized and respirated at least until her blood pressure stabilizes, and also until her lungs look good enough in an X-ray to take out the oxygen tube. Once that happens, the tubes will be removed and she will be allowed to wake up.

Although all the cultures (and, thankfully, the biopsies) were negative, the most likely explanation for the respiratory failure is pneumonia of some kind; it looks viral. Although most of us usually sigh with relief when we hear an infection is "only" viral, in this case it is more worrying than if it were bacterial. Bacteria can be taken care of with antibiotics; viruses can not. And we have learned from a recent test that Timmi has just about no immune system, so viruses are scary. The fact is, though, that the overall picture has improved a bit from day to day, so things are not nearly as scary as they could be.

Her condition is defined as serious but stable.

Don will spend Shabbat in the hospital; I have been going every day for a few hours to speak to her and play music for her through earphones, in the hope that something is registering and that these things will help her. It's hard to be there for more than those few hours, though - intensive care is certainly very different from the pediatric, and even the bone marrow transplant, wards. I'm also not permitted to be there when any medical procedures are being performed. So this is all quite new to me.

Shabbat Shalom to all of you.

December 8, 2000
As I know my last message was very worrying, I wanted to let you all know that Timmi's blood pressure has now been stable for several hours without medication. As a result, the dose of morphine that she is receiving as anesthesia is being slowly reduced, and the doctors hope to be able to wake her and take all the tubes out within the next 24 to 36 hours. So maybe she'll be out of intensive care by Sunday; that would be very good indeed.

Thank you to everyone who replied with love and support to yesterday's message. I truly appreciate it.

Love and Shabbat Shalom to you all,
Sara

December 8, 2005
All human beings know what it is to hope, and many know what it is to “hope against hope.” But I can say now that I did not understand just how stubborn hope can be until Timmi’s journey through illness and, ultimately, out of this life. I discovered that, amazingly, hope has a wayof leaving some of itself behind even when it seems to have deserted us for good.

When Timmi first became ill, it was easy to hope. The doctors spoke of a 90 percent recovery rate for childhood leukemia, there was no reason to think Timmi would be on the wrong side of those statistics. And we had spent six months trying unsuccessfully to diagnose Timmi’s ailment. When she was finally hospitalized for tests, the medical staff was so puzzled by her combination of symptoms that I became convinced that she was suffering from a new and deadly virus without a cure, something like AIDS. So even though the diagnosis that every parent dreads - leukemia - naturally planted its seed of fear, in a bizarre way it was a relief to hear that Timmi was ill with a well-known, potentially curable disease.

My near-complete optimism lasted through Timmi’s first series of treatments and her first bone marrow transplant. When the initial side-effects of the transplant had subsided, and Timmi seemed well on her way to full health, it felt almost like starting a new life - as if Timmi were once again being born. Then came the first GVH, reminding us that things weren’t quite over. The GVH dried her itching skin until it cracked. To prevent the GVH from getting out of hand, doctors prescribed steroids, which bloated her and kept her from sleeping. The medication got rid of the rash, but also suppressed the GVH, so she had to stop treatment, which brought back the rash. And so on in a seemingly endless cycle. But throughout this period I still felt very hopeful, because after all GVH would fight the cancer; just so long as it didn’t get too strong, it was really a good thing. The medical problems that she experienced for the next couple of years made her life and ours difficult, but at least we had her with us – and that was the important thing.

Things were very different the second time around. Now, the statistics were unforgiving. No more 90 percent - or even 10 percent - cure rates; we were told that no one had so far survived a relapse of cancer after a bone marrow transplant. Still, the doctors told us, almost every day there were new advances, promising experimental treatments. I guess that was when we entered our Fool’s Paradise (see “Knowing and Not Knowing,” September 2005), when we latched on to every hopeful word we heard from Timmi's doctors, willfully pushing things we knew out of our consciousness.

As treatment after treatment failed to get real results, I could feel my optimism shrinking together with Timmi’s options. But the morning Timmi went into intensive care, I was amazed to see just how much of my hope still remained. When I came back to the pediatric ward to get Timmi’s things after accompanying her to the ICU, one of the nurses came up to me and asked how I was doing.
“I’m fine,” I said. “I understand that Timmi’s in the ICU because she needs to be on a respirator for a few days until we get her lung infection cleared up. It’s good she’s being sedated, because it would be terrible for her to be awake while she's on a respirator.”
“It’s really good you’re taking it that way,” the nurse said.
“What do you mean?”
“Well, most parents get very upset when their child is taken to intensive care, because of what that so often means.”
What that means? I asked myself. Oh my God, is she saying -
“No, I don't think about it that way,” I said to the nurse, and went out the door.
I looked back at the other parents in the room, and I could tell they knew exactly what the nurse had meant. I saw in their eyes that watching the staff wheel Timmi out of the room to an unknown fate had frightened them deeply, for Timmi and for their own children.
This is just a regular medical procedure, I repeated to myself.

During the month Timmi spent in the ICU, I fiercely held on to my optimism as time went on and the doctors tried day after day to bring her out of sedation. I came every day to talk and sing to her. I told her that we all loved her, and how happy we would be to be able to speak with her again when this was over. Then, after a bit under three weeks, the doctors decided that there was no use in trying, that Timmi's lung infection was incurable and that she would never be able to safely come out of sedation. When they told us of their decision, and that it was now a matter of a few weeks at most, I thought my hope was used up. During that last week and a half, I spent my visits to the ICU staring at the monitor that displayed her vital signs. At home, I spoke with the children and tried to helped them prepare for what was coming. There was no longer any doubt, no longer any hope. Or so I thought.

But when that phone call came, the shock was so great that I felt as if the police had called to tell me that Timmi had been killed in an accident. All those years of knowing that Timmi’s death was possible, then probable, then inevitable – none of it had prepared me for the moment my worst nightmare came true.

It was only then that I realized that hope had never really left me, that it had lived on until the very moment my daughter was finally gone; Timmi and my hope for her had died together. Only with its loss was I able to see that – incredibly – it had been present all along, sustaining me through times I would not wish on any other human being. The Greeks had it right - when Pandora opened the box and let loose all the catastrophes and tragedies that plague this world, she also freed Hope, the gift that enables us to go on in the face of the seemingly unfaceable. Without it, I could not have survived the knowledge that I was going to lose my child.

Even more amazing than the stubbornness of my own hope was the tenacity of Timmi’s. I’ll write about that in my next post.

Days Like Tuesday

2005-12-01T02:06:00.000-08:00

November 10, 2000
There is not much new to report this week. Timmi continues to sleep alot of the time and to feel very weak when awake. At the suggestion of her doctor, we have been trying to find things that she can eat, with a view to reducing and eventually replacing the TPN (liquid nutrition) that she gets intravenously, but with limited success. Usually eating makes her feel awful, so though she tries, there is only so much she can make herself eat.

We did find a lovely woman to be with Timmi twice a week, a very warm person with whom Timmi feels quite comfortable. So now I am able to schedule work days with much more confidence, which makes a huge psychological and moderate financial difference to me.

November 17, 2000
The past week has been pretty much the same as previous ones, with Timmi feeling very weak and spending the greater part of her time sleeping or in bed, and not able to get around much without the help of a wheelchair. An exception was Tuesday, when after the hospital we went to a restaurant, where Timmi actually ate a small amount of food, enjoyed it and did not feel horrible afterwards. We then saw a movie together ("Chicken Run"). When we came home she stayed up with the rest of us and we had a nice family evening. Yesterday she reverted to the previous pattern, and today was worse. Still, days like Tuesday keep me going.

I would like to add that there is no need to worry if an update does not come before Shabbat on any particular week. It does not mean that something terrible has happened, just - most likely - that I was very busy and/or tired that Thursday and Friday, and that there was little new to report.

November 24, 2000
Another week much the same as the last. Up days, down days, on days, off days. So far, though, Timora had two "good" days this week – Monday and Wednesday - during which she was awake for most of the day, and had the strength to participate to some degree in life. Yesterday (Wednesday) was particularly good - she spent the morning and noon hours enjoying the company of her companion, who seems even nicer the more we get to know her. We even got out to take care of her business at the bank. Earlier this week she also got to the Education Ministry with Daniel and registered for the Winter term matriculation exam in Civics, and when she has the strength is studying for the exam. After each of the good days, though, Timora has so far always had a particularly sleepy and weak day.

I myself have been sick the last few days (some kind of virus), and again had some insight into what life is like for Timora. If I get so frustrated by a couple of days of inability to get anything done or even concentrate on reading, how must it feel for her, who every day has to contend with some degree - sometimes an extreme degree - of physical weakness, and at least some - sometimes a lot of - pain, not to speak of imbalances that effect her mood and her ability to cope! It is impossible to always be in touch with this feeling in such a deep way, though - if I were, I would be unable to function. So as always, as I get better I will have to return to tempering my empathy with a certain dose of repression.
Shabbat Shalom to all.

Love,
Sara

December 1, 2005
Have you ever noticed that when you ask a mother how she is, nine times out of ten she’ll answer by telling you how her children are doing? While Timmi was ill, of course, my world naturally revolved around her and caring for her. When things were going relatively well for her, I was happy; when things were hard for her, they were hard for me. My identification with Timmi reached a point where I experienced my own (minor) illnesses by comparing them to hers. But even now, after Timmi is gone, I find that my emotional highs and lows correspond to a very impressive degree with the ups and downs of my children’s lives, and with how much “quality time” I get to spend with them.

This past week, for example, has been a very good one for me. This is partly because my field internship is going so well, as I'm fulfilling a dream at least fifteen years long and learning to become a psychotherapist. (One of the advantages of being 50 years old is that today I know just what I want to do, what I like doing and what I'm good at doing.) The course is interesting, I’ve started to see clients and I’m getting very helpful feedback from my supervisor. But if you asked me what was the high point of my day on Monday, for example, I wouldn’t answer that I'd had an excellent interview with a client, or that I'd finished the writing I needed to do for my studies – although both gave me a deep sense of satisfaction. No, the best part of Monday was going to see a movie (“Corpse Bride”) with Elaine and Danny – even though the movie was pretty silly – and then sitting and eating dessert with them at the mall’s fast food court – even though as a general rule I detest both fast food and malls. Just being with the kids was enough.

Another high point this week was Friday evening, when Sheila came to Shabbat dinner with the young man she’s seeing (whose name, unbelievably enough, is Tim). Tim, like our other adult daughters’ partners, fits right into our family, and we all feel very comfortable with one another. So we spent the evening talking and laughing, discussing a wide range of serious and not-so-serious subjects. The happy presence of so many of my children – and the reminder that all of my adult children are now, blessedly, involved in serious relationships with lovely partners – filled me with so much joy that I completely forgot how tired I was after working very hard at my fieldwork and in my home all week.

One of the many advantages of having a large number of children is that there's always at least one whose life is going well. When I’m feeling low, whether because I’m worried about one (or more) of my children or for any other reason, I can always remember that there's someone in the family for whom life is good at that moment. This thought gives me an instant lift – almost like popping a pill, but with no side effects. And that lift becomes a real high when we also spend happy time together. (Interesting thought – am I addicted to my children?).

There’s a downside to my supersensitivity to my children’s emotional state – especially, of course, to their pain. I still find it hard sometimes to distinguish between their troubles and mine, and must struggle not to identify with them so closely that I make their pain my own. Not only does this kind of over-identification make me less able to help with my children's problems, but it is not healthy in any relationship, particularly between a parent and a child. Though I’ve gotten better at respecting this kind of boundary between myself and my family, it will probably remain an issue for me for the rest of my life.

Still and all, when life seems overwhelming – and life really can sometimes feel like nothing but a series of painful losses – it’s days sharing love and fun with my children, as I did with Timmi that Tuesday five years ago and as I continue to do with the others whenever I possibly can, that keep me going.

Miracles

2005-11-25T01:49:00.000-08:00

October 29, 2000
Timmi had another mixed week this past week. On Shabbat she developed a low-grade fever and so we brought her to the hospital on Sunday. The fever itself rose very slowly throughout the week, despite our giving her intravenous antibiotics three times a day at home, and it looked like we might have to hospitalize her, but Thursday evening the fever dropped, and was gone by Friday. Also, the blood cultures taken on Sunday were negative, so we discontinued the antibiotics and, of course, Timmi stayed at home.

On Sunday we spoke to her oncologist, Professor Cividalli, together with her doctor from the bone marrow transplant department, Professor Or, about Timmi's ongoing problems (lack of sleep, nausea and vomiting, weakness and intermittent pain). Professor Or is of the opinion that most if not all of these problems are the result of too much GVH, although there is no way to be sure (at least the pain could be from returning tumors). He and Professor Cividalli decided to try giving her Thalidomide, which is effective against nausea, helps with sleep problems and has also been approved for use against GVH. (When we pointed out that GVH is what we want, Professor Or said that if what she has is GVH, she has too much of it.) In addition, it may theoretically also be somewhat effective against some kinds of cancer. He called it a "miracle drug".

She took the first dose Sunday night, and Monday there was a very dramatic improvement - she had no nausea and in fact ate several times during the day, and she had much more energy and significantly less pain - we went to the Malcha Mall and she bought several pairs of pants and shirts. I was beginning to believe that we were indeed seeing the effects of a miracle drug, but then that evening she started having serious pain again. The next two days she was again very tired, and did have some pain, though less. And while the nausea did disappear, eating seems to cause bad stomach pains. Since then things have been up and down - while generally she feels better, she is often weak or in stomach pain, and the other pains have not totally disappeared. However, I know that the medicine was not really supposed to produce an instant miracle, so we still hope that Timmi's condition will improve steadily, even if there are ups and downs along the way.

The fact that her condition did at least seem to respond to the Thalidomide makes me hope that maybe we really are seeing GVH rather than a relapse. Then, if we can just help her feel well enough, she may really be able in the foreseeable future to resume her life, if only on a limited scale.

Shavua Tov to all.

Love,
Sara

November 18, 2005
Just about everyone longs for a miracle at some time. The poor man dreams of finding that pot of gold at the end of the rainbow. The lonely woman fantasizes that one day she’ll kiss the right frog, and he’ll turn into a prince. Entire peoples believe that God will smite their enemies, if only they pray fervently and faithfully, and live pure enough lives. And the parents of a mortally ill child cling to the hope, however ephemeral, that she will be restored to full health against all the odds - whether through modern medicine, alternative treatments or prayer. After all, Jews, Muslims and Christians alike were raised on accounts of God’s direct intervention in human affairs; the Matriarch Sarah’s pregnancy in her old age, the parting of the Red Sea, and Muhammad’s ascension to heaven immediately come to mind. Why shouldn’t we expect miracles?

The sages of the Talmud, however, warned us that the age of human ability to converse directly with God – that is, prophesy – had already come to an end before their own time two millennia ago. They taught that we may not rely on miracles - or what we usually mean my "miracles" - that is, Divine actions that dramatically intervene in the course of nature. At the same time, however, they called upon us to acknowledge the daily miracle of the continued existence of the natural world. Since my journey through Timmi's illness and death, I’ve come to appreciate the profound wisdom of that philosophy.

While Timmi was ill, we heard tell of miracle-working rabbis, usually Cabbalists, who were said to cure hopeless illnesses and conditions through prayer. More than once well-meaning people offered to speak to a particular rabbi on Timmi’s behalf, but Timmi was adamantly opposed. (The reason she gave was actually quite funny. She had a friend in grade school who'd suffered for a long time from constipation, until she received a blessing from one of the more prominent mystics in Israel - upon which her trouble disappeared. After that, medical mysticism was indelibly associated in her mind with the results, so to speak, of that particular intervention.) I myself am very much the rationalist, and mysticism - especially Cabbalah - generally leaves me cold. But I always wondered whether it might have been worth trying to convince Timmi that she had nothing to lose by allowing others to seek the blessings and prayers of spiritual leaders. (And joking aside, when you come down to it, her friend really had been healed of a serious problem.)

I changed my mind after hearing the stories of other bereaved parents who had in fact gone to seek a blessing from a “holy” man, sometimes more than one. They described crowds of desperate people lining up for hours for the chance to spend a minute in the mystic's presence, and then being hustled out after receiving a few brief words for their children. The experience left them feeling frustrated, distressed and even somewhat humiliated. But far worse was their deep pain at seeing their hopes dashed as their children, after being blessed by men who purportedly possessed supernatural powers of prayer, nonetheless continued their inexorable and final journey away from them. Some simply felt angry at those they saw as having disappointed them. Others, however, became bitter and disillusioned, and lost the faith that had sustained them until then.

As I’ve written more than once (see “Choosing Life, Choosing Faith,” August 2005, and “Loving God: A Partial Response,” September 2005), my faith is too precious to me to risk losing in a gamble on what God will decide to do at any particular moment. And I'm certain that the surest way for me to lose that faith would be to expect Him to perform miracles on demand. I certainly don’t know God’s mind; I haven’t received any postcards from Him, either. What I do know is that God has been an enormous source of the strength and resilience that have enabled me to face the suffering that I’ve both experienced and seen others experience in this world. And my faith enables me to feel thankful for my life despite that suffering, and to look toward the future with hope.

This sense of thankfulness is nurtured by the Jewish tradition. When we awaken in the morning, the first thing we are meant to do is thank God for returning our souls to our bodies after sleep. We then go on to recite a set of benedictions expressing our thankfulness to Him for making us who we are, and for all the blessings that He has bestowed on us: our bodily integrity, our eyes to see, our ability to stand and move about – even our clothes and our shoes.

In our morning prayers, we bless God for "in thy goodness [renewing] the work of creation every day, constantly.”* We also thank Him "for our lives which are in thy charge, for our souls which are in your care, for thy miracles which are daily with us, and for thy continual wonders and favors - evening, morning and noon." We are not meant to take the world's continued existence for granted. Every day that we awaken to find that the sun is still in the heavens, and the earth is still teeming with all of its myriad forms of life, is a new gift to us from the Creator of all life.

On Shabbat, we add special words of praise and thanks when we conclude the set of psalms that we recite as a preliminary to our prayers. It contains some of my favorite verses:
Were our mouth as full of song as the sea [is with water],
And our tongue with ringing praise as its roaring waves;
Were our lips full of adoration as the wide expanses of heavens,
And our eyes sparkling like the sun or the moon;
Were our hands spread out in prayer as the eagles of the sky,
And our feet as swift as the deer –
We should still be unable to thank thee and bless thy name,
Lord our God and God of our fathers
For one one thousandth of the countless millions of wondrous favors which thou hast conferred on our fathers and on us.

Life, then, is itself an ongoing miracle, for which the Jewish tradition teaches us to feel a deep sense of gratitude. True, in the aftermath of Timmi’s death there was a period during which I was unable to be thankful for anything; it truly felt as if I had no blessings left to count. But simply saying my morning prayers of thanks, day after day as the months and years have passed, has helped rekindle my sense of gratefulness for the all I’ve been given. And I have indeed been given a tremendous amount – my health, my friends, my community and, most importantly, the love of a wonderful man and seven amazing children.

Our sages, were they here today to hear my story, would not be surprised in the least if I were to tell them that God did not perform a miracle enabling Timmi to remain in this world. But I know that they would be thankful together with me that I was given the miraculous privilege of bearing, birthing, and spending eighteen precious years together with her.

*Translation of all prayer verses by Philip Birnbaum, Ha-Siddur Ha-Shalem.

Beginnings and Endings, Endings and Beginnings

2005-11-12T09:43:00.000-08:00

November 9, 2005
Like the updates to my community, this memoir is nearing completion. It will end in about a month and a half, near the fifth anniversary of Timmi’s death. As I look back at those days five years ago, when Timmi’s life was drawing to a close, I find myself thinking a great deal about beginnings and endings, and – more so, perhaps – about endings and beginnings.

Last month, the Jewish High Holidays ended with Simchat Torah (literally, “Joy in the Torah”), which celebrates the symbolic “marriage” of the Jewish people and the five Books fof Moses. We honor the Torah by dancing with it – as at a wedding – for seven “rounds.” Then, we conclude the yearly cycle during which all five Books are read aloud in the synagogue during services, by chanting the last portion of the Book of Deuteronomy. Each person present has a chance to be called up to read (or have another read for him/her), and to recite the traditional blessings on public Torah reading. Immediately after the very last verses of the Torah are read, the congregation listens to the first chapter of Genesis, and the cycle begins anew. We believe that Torah can never truly end – its conclusion will always generate a new beginning, as each year we add to and deepen our knowledge and understanding of the sacred text through new insights, based on past years' learning.

In order to enable all present to be called up and recite the blessings, most of the portion is read over and over again. However, the Torah’s concluding verses, as well as its first chapter, are read only once. It’s considered an honor to be called up to bless either of these readings, and those chosen for the honor are traditionally called “grooms” of the Torah and of Genesis. In our community, the women hold a separate Torah reading, complete with “brides” who are called up as the Books of Moses end and begin again. In the joyful spirit of the festival, which can get quite wild and even a bit rowdy, the “brides” sometimes put on veils or other trappings of a wedding.

This year, the Torah’s “bride” was chosen in honor of her receiving a PhD in Talmud. And I was called up to renew the cycle by blessing the reading from Genesis, in honor of my beginning my studies toward a new career in social work. A friend brought me her bridal veil, and I thought I'd wear it just for the fun. But in the end, when I was called up, I was unable to put on the veil. Although I felt grateful to have been chosen to perform this mitzva, I just couldn’t join in the boisterous atmosphere. As in each of the past five years, the ending and beginning of the Torah cycle touched a deep sadness in me.

On Simchat Torah ten years ago, Timmi was honored as Genesis' "bride,” almost exactly a year after she had chanted the first chapter of that Book at her Bat Mitzva. It was an optimistic time; Timmi had completed her first course of chemotherapy and a bone marrow transplant, and was not showing any debilitating side effects from her treatment. After concluding the chapter, she recited the “Benediction of Deliverance,” by which Jews traditionally give thanks to God for enabling them to survive a dangerous experience. Many members of our community cried then, releasing the fears that Timmi’s illness – and treatment – had evoked, as well as their happiness at her recovery.

Now, I recited the blessings and stood before the Torah as a lovely young woman named Noa started the Book of Genesis on my behalf. The Torah's “bride” had chanted its concluding verses by herself; I'd thought of doing the same, but decided against it, knowing that I would get choked up and might be unable to read aloud. In a way, though, it was harder to have Noa read for me. My eyes filled with tears as her clear and strong chanting brought me back ten years, when Timmi stood in her place singing the chapter in her own sweet voice. But even more painful was the memory of my daughter standing in my own place, reciting the traditional blessings on Torah reading and adding her thanks to God for having survived the previous year.

The ongoing cycle of Torah reading reflects the cycles by which we all live. Foremost among these, perhaps, is that of the natural world, as the earth travels its yearly cycle around the sun. In the natural order of things, life and death themselves are a cycle, too. We are born, bring children into the world, and raise them to become adults who, we hope, will carry on our work in the world and will bear their own children. Then we die, leaving behind us the seed out of which life will continue to be generated, and our own lives’ purpose continued.

A child’s death shatters that natural cycle. And so as I stood before the Torah that day, I was intensely aware that Timmi's and my roles had been reversed: it was Timmi that should have been following in my footsteps, and her children – my grandchildren – in hers. Instead, it was I who was standing where she had before me, with no hope of grandchildren through whom my legacy will join hers to live on after I've gone to join her in the next world. God willing, I will have other grandchildren who will stand before the Torah and bless their heritage. God willing, these grandchildren will carry on the work I've tried to do in the world, adding their parents’ contribution and their own to what I myself have bequeathed them. None, though, will fully bear Timmi’s unique imprint.

I do not mean to say that the end of Timmi’s corporal life on this earth also extinguished her spirit. Timmi did leave a great deal of herself behind – in her writings, in her friends, and most of all in her family. Lisa, Sheila, Shari, Elaine, Aimee, and Danny – each carries a spark of Timmi inside, and I have no doubt that through them, and then through their children, her light will continue to be transmitted from generation to generation.

Still, a part of me – a part of us all – will never accept the tragic and unnatural truth that Timmi did not stay with us long enough to bring new life into the world before the end of her own.

Friends

2005-10-31T06:17:00.000-08:00

October 19, 2000
Timmi continues to have "up days" and "down days" from the point of view of her strength. Saturday night we did go with her to the Hanoch Rosen performance, which she enjoyed thoroughly, and the next day three of her friends from school came to visit for her birthday; she felt relatively well and had a very good time with them. The next day, though, she spent in bed and the day after was still feeling quite weak. Yesterday, she woke up with a certain amount of energy, but in the middle of the day started having pain in various places.

Now it is the pain that has us worried. It actually got somewhat stronger today, and if this continues tomorrow we will again have to raise the dose of her pain patches. The pain is, unfortunately, in many of the places where she had the largest tumors in the past. This, of course, is scary. But she also has various other kinds of pains which are more indicative of post-transplant syndrome. The doctors still don't understand what is going on. Her liver functions, for example, are improving, but none of us (including the doctors) know whether this is good or bad, because if the liver dysfunction was due to GVH the improvement would mean that whatever GVH she had is disappearing. Actually, that would be consistent with an interpretation of the renewed pain as resulting from renewed tumor growth. We hope not.

Next week we will see if the improvement in her liver function has come with an improvement in her blood clotting function; if it has, that will enable a biopsy of her liver to be performed, which will give us a better idea of whether she indeed has some GVH.

Her mood remains relatively good; today she was with us for several hours in D. and B.'s sukka and really enjoyed herself, even ate a little. Then we came home and saw a video together; now she is working on a compiling and typing project for Lisa. As long as she has the strength to be active and keeps busy, her emotional state is usually quite good (the same can certainly be said for me!).

I wish all of you a joyous Simchat Torah,* and a Shabbat Shalom as well.

Love,
Sara

*Simchat Torah - the festival immediately following the week of Tabernacles.

October 31, 2005
At the beginning of the last school year, I wrote about Timmi’s relationships with other children her age (see “Back to School, September 2004). I wrote that in the last year of her life Timmi was very friendly with a group of girls at her school, who helped her when she needed it and tried to do nice things for her (such as her birthday celebration five years ago). But she never had the opportunity to form the kind of truly intimate friendships that are the hallmark of most girls’ adolescent years. This was because neither Timmi nor her peers were old or mature enough to bridge the enormous gap that her illness and brush with mortality had opened between her and those who had, thank God, never had such experiences.

Timmi’s cancer and death opened the same kind of gap between our nuclear family and our own friends - and even our extended family - with the result that we felt painfully isolated, with only each other to understand and share our pain. Over the last years, although it's seemed at times as though it would never happen, our journey has taken us to a place where we are able once again to enjoy the give and take of friendship.

After Timmi’s cancer was diagnosed, I didn’t feel isolated at first. My friends were universally supportive, and our religious community rallied to provide whatever help it could (see “Community,” October 28, 2004). I needed to talk and talk, and there was no shortage of willing ears. My children’s experience was less positive; being so much younger, most of their friends had no idea how to talk with them about their sister’s illness. A few of the older girls’ friends, though, visited Timmi quite often and almost always succeeded in cheering her up, even during her seemingly interminable stays in the hospital. (Some of my own friends also tried visiting Timmi in the hospital, but it only made her feel uncomfortable; who needs old people whom you barely know hanging around when you’re feeing sick?)

But the picture changed when Timmi’s cancer relapsed. All of a sudden, things got infinitely scarier; we were no longer within the “80 to 90 percent” leukemia cure rate that the doctors were so fond of citing, but headed for the dark side of the statistics. It wasn’t so easy now for me to be upbeat and optimistic, or for my friends to know how to be with me. Most had little idea how to be sensitive to whatever I was feeling at the moment, and go with it. As a result, some friends chatted about superficial matters to which I found it hard to relate. Some – including friends I’d known for many years – even began avoiding me altogether. Others looked at me with mournful eyes, just when I felt like either talking about Timmi in a positive vein or distracting myself with universal, day-to-day concerns. It was as if I wasn't allowed to be cheerful.

Once, coming out of synagogue, I was enjoying listening to a casual friend describe to another her recent trip to Europe . When she caught my eye, though, she stopped talking, composed her face into its saddest expression, and asked (in a voice dripping with sympathy), “And how’s Timmi?” I wanted to punch her. Another time, I was laughing at a funny story someone had just told me when a (different) casual friend came up and said, “Why are you laughing?” She then paused for a few seconds and asked the inevitable question: “What’s happening with Timmi?” Although I have no doubt that these friends meant well, the message I heard was, “Have you forgotten? Your daughter’s sick! How can you think about anything else?”

After Timmi died, things got worse. The emotional gap between myself and my friends widened into a yawning chasm (or, to use my usual metaphor, the divider between us became a seemingly impassable wall). Some of the problem was that I myself was no longer in a place where my friends’ love and concern could do me any good. There were a few of my friends who invested a great deal of energy in helping me get through my ordeal. Tova took me to lunch every week for months during my first year of mourning, and listened carefully and empathetically to everything I had to say. Debbie, Barbara and Veronika also called and invited me out with them as often as they could, and continue to do so to this day. I could see how much they loved and cared about me. But conversation with even my most sensitive and empathetic friends failed to make as much as a dent in my feelings of despair and isolation. And there were so many things that I couldn’t find the words to explain to others outside the “club” of bereaved parents. Only a year ago, I wrote Robert Avrech (the author of “Seraphic Secret”) that when friends ask me how I am, “I want to say that I’m no longer the person I was, and often feel as if I don’t even know who I am anymore. But I almost never say those things. I’ve finally learned to say “fine” when people ask, even if I’m not. The true answer would always be too long, too complex, and too true for most people to handle.”

Another problem was my friends’ genuine feeling of helplessness; they were at a loss as to how to behave. For example, some people didn’t invite Don and me to social gatherings, being sure that we wouldn’t want to attend. (With these friends, it was fairly easy to explain that it wouldn’t offend us to be invited, and that we could be counted on to accept or decline the invitation according to where we were emotionally at any particular time.)

But some people said and did things that so hurt and angered me that I didn’t see how I could maintain my relationship with them. During my first year of mourning, I had lunch with a woman whom I had known for years and whose company I greatly enjoyed when we would meet occasionally. Being utterly incapable of making small talk of any kind at that point, I tried to describe to her the depth of my depression. “Sometimes I feel as if there’s no point in living any more,” I said. She reacted by getting angry, and telling me that I had no call to say such a thing when I have other children who need me. I was so shocked at the vehemence of her reaction that I just shut up, and didn't bother to explain that of course I know I have other children and wouldn't dream of actually doing anything to end my life, and that of course I understand they need me and I spend most of my energy and passion on them and, and, and... No, I just quietly allowed the lunch to end and never went out with her again (neither of us has called the other since then).

More inexplicably, there were people, including one of my oldest and closest friends in Israel, who simply stopped asking me how I am. Whenever I spoke with this friend, she directed all conversations either to herself or to neutral subjects. If I began speaking of Timmi or of my mourning, she would change the subject within seconds. At times such as these, I felt a deep sense of betrayal, over and above the deep loneliness that never seemed to leave me.

Don and our children had similar experiences, finding that people with whom they had thought they were close were unable or unwilling to share their pain, or that they disappeared altogether.

I must admit that for a long time, although Jewish law forbids it, I remained angry with and resentful toward those people that I felt had deserted me. I felt I had lost not only my daughter but also most of my friends – as well as the ability to derive comfort from my relationships with those friends who had remained faithful. Those feelings only intensified my grief and deepened my despair. As grudges always do, the rancor I harbored clouded my emotional life, threatening to permanently embitter me.

But suddenly, a few months ago, I looked into myself and discovered something marvellous - all traces of my bitterness are gone. I found that I finally believe and understand at the deepest level what I'd been telling myself for years: people are only human. The very notion of a child’s mortality is so frightening that many people are unable to face it. The fact that I lost my daughter brings home to other parents the unthinkable prospect that they also could lose a son or a daughter. If there are some who can’t handle being reminded of this, who am I to judge them? All I feel now toward them is empathy; more importantly, I've forgiven them. Although they don’t have the language to express it, or even the ears to hear me express it, in their own way they do share my sadness.

At the same time I made this discovery, I realized something even more amazing: my friendships have begun once again to give me an intense pleasure that I thought had been lost forever. I can again speak with a friend and feel understood; sharing my troubles lightens some of the burden, just as it did so many years ago. I can again listen to others with a fully sympathetic ear; I’m no longer so traumatized by my own family’s catastrophe that I can’t give my full attention to other people’s lives and experiences. (And it’s a good thing, too, as I’m now training to be a social worker!) When I look around me during Shabbat services at my synagogue, I'm blown away by the number of people whom I care about, who care about me, and with whom I have a relationship that contributes toward my feeling of being held – embraced – by my community.

My renewed capacity for close friendship bore fruit this summer, when I was in New York for the first semester of my studies. I hadn’t lived in New York since I was 17, when I fled the city for college, intending never to look back. This summer, I took advantage of my two months in Manhattan to reestablish relationships with friends whom I hadn’t seen in decades. And I was fortunate enough to meet and become very friendly with several new people, with whom I hope and expect to become closer during my next two summer terms in New York.

When I look at my family, I see a similar process at work. Don and the children have healed at least some of the friendships that were hurt in the wake of Timmi's death, and have forged some new ones. And all four of my adult daughters are now in serous romantic relationships!

I ended last year’s "Back to School" post with a prayer that in the future our family would make and deepen relationships with those who haven’t had our experience. “I pray that what we went through won’t impoverish our ability to relate to other people, but will enrich it," I wrote. "Most of all, I pray that our pain will build not walls of isolation but bridges of empathy and love.” It seems that this has at least begun to happen for all of us, and for that I am very, very grateful.

Ushpizin

2005-10-22T09:52:00.000-07:00

October 21, 2005
We are now celebrating the middle day of the seven-day festival of Succot (the Feast of Tabernacles). During this holiday, we eat and, where possible, sleep in a temporary dwelling (succah) made of wood, cloth, or (in the modern age) plastic, with a roof consisting only of palm leaves, woven bamboo mats or other material derived from the plant world. We do this in order to remind ourselves – to reenact, in a way – the existence of the Children of Israel during the Exodus from Egypt and their forty years’ wandering in the desert: vulnerable, insecure, and dependent only on God.

Paradoxically, perhaps, Succot was also defined by our Sages as our “time of happiness,” the holiday during when we are enjoined to rejoice. (Our own wooden succah is located the parking lot, six floors down from our apartment. We’ve seen it destroyed one year by a car and blown away another year by a storm, and we’ve had neighbors play “pranks” on us such as throwing bottles filled with water onto the succah's roof. There is a running argument in our family as to whether we should be envious of people who build their succah on an open balcony of their apartment or in a garden adjoining their home, because they can enjoy the holiday that much more easily, or feel superior because in our vulnerablility we are really, truly fulfilling the spirit of the commandment.)

One of the ways we add to the holiday's joy is through hospitality – inviting guests, called by their Aramaic name ushpizin, into the succah to share a meal with us. According to Jewish tradition, we welcome more than our friends and family into our temporary home. It is said that on each day of the holiday, the spirit of one of our forefathers comes to visit. On the first night we welcome Abraham, on the second we receive Isaac, and on the third, Jacob – followed in turn by Joseph, Moses, Aaron and finally by King David. Our family marks this by singing a special song welcoming each visitor from the ancient past to our holiday meal. It's really a children's song, but we love singing it even though our children are now adults (or almost adults) – it's one of our little family rituals, which makes us feel close to one another by reminding us of all the years we've been singing together, in the succah and everywhere else.

On the first (and most important) night of the holiday, when we had just finished our song of welcome, Shari surprised us by saying with a smile, “Maybe tomorrow Timmi will come and be our guest in the succah. It will be her birthday, after all.” I carefully watched for the other children’s reactions. Not so long ago, they would most likely have looked down at their plates and not said anything. During the first years of our mourning, some might even have left the table in order to cry in the privacy of their rooms. But when I looked at Aimee, she too was smiling. “Maybe we should ask Angela” – a friend who sometimes sees the spirits of those who have left this world (see “Healing," August 2004) – she said, half-laughingly.

I think that at that moment all of us at the table felt bound to each other in a mixture of contradictory feelings – a warm happiness at our memories of Timmi, a deep sadness that she will never again sing with us, and an intense yearning for the possibility that, in honor of her birthday, she might actually make this Succot “our time of joy” by joining the Patriarch Isaac the next evening as one of the ushpizin at our table.

If only.

Return

2005-10-16T09:07:00.000-07:00

September 29, 2000
A quick and optimistic update for the New Year - one of Timmi's doctors called this morning and said that because at least some of her discomfort may be due to GVH, they would like to try a new anti-GVH drug that may ease her symptoms but will not totally suppress the GVH (and thus risk a fast and strong relapse of the cancer). It is given one dose at a time, and after each dose her condition is evaluated after a week or two, in order to see whether she should be given more. This measured response to GVH is indeed something new, as up to now every time she has had GVH the medications she has received have totally suppressed it - the last time, causing the terrible relapse she had this summer. If, however, there is a way that she won't have to choose between being miserable with GVH or getting her cancer back, that would be wonderful news indeed.

Of course, we don't know even whether Timmi is in fact suffering from GVH, and if she is whether the new medication will help. But this is the first time in several weeks that we have heard of something which has a chance of helping her feel better. So I wanted to share it with you all.

Shana Tova* again,
Sara

October 7, 2000
Well, the "new" medication that the doctor told me last Friday that they want to try turned out not to be so new after all. The plan now is to give her a light dose of a certain kind of chemotherapy (which she has had before) once a week, in the hope that it may help with the GVH, if that is what she is suffering from, or if her problem is some kind of a relapse then it may help with that as well (it could be, of course, that Timmi is suffering from both). In addition, she is now getting a very low dose of steroids, hopefully enough to help her feel a bit better but not enough for nasty side effects.

Tuesday she got the chemo, as well as some plasma, which apparently made her feel somewhat better temporarily, as she was awake and participating in family life for a few hours that afternoon. Other than that, however, the week has been mostly a dud, with Timmi spending all day in bed (sleeping most of the time) on Monday, Wednesday and most of yesterday. When she was awake those days, she felt awful, with a perpetual headache, pain in her stomach and the soles of her feet, nausea and vomiting and such weakness that she had the strength to do nothing.

Yesterday I spoke with Nathan Cherney about the pain and at his suggestion we added a "pain patch" of Fentanil (a kind of narcotic). He will also speak with Professor Cividalli about what more may be done for her.

Today, the steroids seem to have kicked in. She was up early and has been up since, tried (unsuccessfully) to eat, watched a video, read and has been generally awake and mentally if not physically active. The downside of the steroids is that she hardly slept last night. Also, the extra Fentanil seems to be working, as she has been having significantly less pain so far today.

We hope that her renewed strength will last, and that the sleeping problem will be solved. Also, of course, that the steroids, however low the dose she is getting, will not suppress any GVH that she may have and that may be holding the cancer at bay.

Shabbat Shalom and G'mar Hatima Tova.**
Love,
Sara

October 13, 2000
There isn't really anything new to report. We had up days and down days, down days being those during which Timmi slept most of the time and felt quite bad when awake, and up days being those during which she had the strength to stay awake and read, watch videos, knit etc., despite not feeling very well physically. Her mood, when awake, has been pretty good, considering. Also, she is now sometimes able to eat a small amount and keep it down.

The doctors have no explanation for her symptoms, which now include pain in some not-very-encouraging places (various bones). The final results of the biopsy that was done on her stomach lining showed no evidence of GVH or anything else specific. Because her liver function improved somewhat after the treatment she received last week, after Succot we will re-check her blood clotting function in order to see whether that has also improved, and sufficiently to enable a liver biopsy to be performed. In the meantime, we are hoping that what we are seeing is not some kind of relapse, but rather some kind of GVH or other effects of the transplant.

One nice thing is that on Saturday evening we and Lisa are hoping to take her to a performance by the mime Hanoch Rosen, for her 18th birthday, the Hebrew day of which falls just then (and Sunday). We really hope she will be up to it, and will enjoy herself and be able to stay to the end.

I wish all of us a year that will change direction radically from the way in which it has started, and bring peace, prosperity and good health to all of you who are reading this, as well as to all of those of us who live in this troubled land.

Shabbat Shalom and Hag Sameach,***
With love,
Sara

* Shana Tova – Happy Jewish New Year.
** G’mar Hatima Tova – A greeting given before Yom Kippur (the Day of Atonement), meaning more or less “May you be inscribed in the Book of Life” during the coming year.
*** Hag Sameach – Happy Holiday.

October 15, 2005
Readers who have been following this blog know that in each post I try to find and develop a theme common to what I was experiencing five years ago and where I am today. But for the last two weeks I’ve been reading and rereading the updates to my community around this time in 2004, and haven’t been able to find a single thread connecting my life then and my life now. So what can I write about? I asked myself. Then I realized that the very fact that things are so different today than they were then is very big news indeed. Now, at the time of year at which Jews are called upon to return to the spiritual path that God has set out for us, I realize that although my spiritual journey is still far from its end, through God’s grace I am well on my way to returning both to the work I was meant to do in the world, and to a part of my inner self from which I was separated when Timmi died.

Last Thursday, we observed the Day of Atonement, Yom Kippur. Yom Kippur is the most important day of fasting and prayer in the Jewish calendar, as it is the day on which we may receive forgiveness from God for our sins of the previous year (see “Forgiveness,” September 2004). In order to be forgiven, Jews are enjoined to engage in the process of teshuva. While this Hebrew word is often translated as “repentance,” its literal meaning is “return;” that is, Judaism calls on us to come back to God and to His path. To me, this means that we human beings start our lives in a state of innocence; that our innermost core was created in a state of natural grace. Transgression of God’s commandments distances us from our true selves, which continue to long for our original condition of closeness with our Creator. Teshuva offers us the opportunity to bring our souls back into harmony with the Divine will, wherever we are before starting the process. This is an intensely optimistic concept – we always possess the capacity to change.

I remember how, when I first began to observe the Jewish commandments and many years afterward, my sense of nearness to God after Yom Kippur was almost physical. It was one of the most pure and beautiful feelings I have ever experienced, as if I were filled with a radiant but gentle light. That feeling sustained me throughout the year, and sometimes – during prayer, when I visited a place of great natural beauty, or occasionally even just while walking here in Jerusalem – I could actually sense that God was near. This feeling (knowledge?) gave me courage and strength with which to face a very challenging life.

But then my daughter was taken – and with her my ability to feel the small spark of Divine presence with which I had been blessed at special times before then. Since then, I’ve had to take Yom Kippur on faith alone. The day is still powerfully significant to me because I know, at least in my mind, that through its observance I may return to God’s path. But so far a sense of God’s presence has not returned to my heart. And I’m not sure it will ever again return; my ability to sense God near me may be just one more loss for me to process.

What God has given me, though, is the courage and the strength for two different kinds of return. One is related to my active, outer self – I’ve begun to beat a path back toward a life that I lost during the last stages of Timmi's illness; indeed, to return to full life after living for a long time in a state of suspension after she died. The other relates to my inner self – I’m well on my way to regaining a capacity for happiness that I was afraid had disappeared forever.

When I look back at my updates of five years ago, I am amazed at how my entire life then revolved around caring for Timmi (and trying to give whatever attention I could to my other children). Is she in pain today? If so, where does it hurt, and does it hurt more or less than it did yesterday? Did she eat today? If so, did she keep it down? Does she have the strength to do anything at all? If so, what kind of activity can we find that might cheer her up? And is there anything we can do together with her as well as with at least some of her siblings? Does she show signs of GVH? Of a return of the cancer? My universe, which had once included a full professional life, social life and family life, had shrunk to the dimensions of a blood test report, a light soup that Timmi’s stomach might be able to tolerate, a video that’s amusing enough to be diverting but doesn’t demand too much concentration.

After Timmi died, my world contracted even further, to include practically nothing but my own grief and that of my family. I sometimes made forays into the “real” world – I joined a book club, did an occasional translation, met friends for lunch – but when I was alone with myself, almost everything outside our family’s bereavement seemed meaningless. When I was with other people, a thick wall separated me from them, a wall so massive that I could practically see it. It was as if I were no longer really living – and it seemed as if the nightmare would go on forever, that I’d never really return to the land of the living. And in that state of suspension, anything beyond a moment or two of happiness at any one time seemed permanently beyond my grasp.

But when I look at my life now, I see that I am on my way back after all. I’m moving in the direction of a meaningful work life, in which I’ll be able to help other families get through their own nightmare of a child’s terrible illness. The wall between me and the rest of humanity, while it still exists, has now been breached in many places by the love of friends who care about me; when I was in New York for my MSW studies this summer, I was even able to renew old relationships and to make new close friendships. And my family has been freed from the frozen depression that sometimes dominated the atmosphere at home following Timmi's death – my children can now speak freely of their sister, her illness, and her death without needing to run and lock themselves in their rooms at the very mention of her name. Her memory is no longer a shadow hovering over us, but rather a presence that we will always carry with us, a source of tears but also of warm memories and laughter. Like the teshuva of the Jewish religious concept, this kind of worldly teshuva is a return to the way we were meant to be when we were created: we were put on this earth to be active agents in bettering it (“repairing the world,” in the Hebrew expression). We were meant to work, to participate in human society and to raise children who may carry on our work after us. I am, thank God, well on my way back to all of these.

And this return to a fuller life in the world has brought about an inner return for me as well. By nature, I have always been quite an optimistic person, believing in the possibility of happiness even when it eluded me at any particular time. Timmi’s death was a severe blow to my optimism; how could happiness ever be possible again after losing her, when every day I am reminded of that loss by her absence? But amazingly – miraculously, perhaps – I’ve found that as I’ve been able to make my way back to an active and meaningful work, social and family life, my connection with the inner core of optimism and capacity for happiness with which I was created has also been restored to me.

Through the process of teshuva, God gives me the opportunity every year to wipe my spiritual slate clean and return to a state of natural grace. I don’t know if my spiritual teshuva will ever be strong or complete enough to enable me to go back to the kind of naïve and innocent sense of God’s presence that I had before Timmi’s cancer irrevocably changed my life and the lives of all my family. But I do know that God has granted me a different but no less precious gift – an ability to change what I do with my time in this world. Even if I’ll never be able to return to the life I led in those days of innocence before I lost my daughter, then God has at least inscribed me in the Book of a true, meaningful, and even potentially happy existence during my lifetime – even after that crushing loss.

Something to Do

2005-10-03T07:27:00.000-07:00

August 31, 2000
Timmi's week was better than the last one, though still far from "good". The best news is that we seem to have found a solution to the problem she was having of constant nausea. Since she started taking the medication, she has been feeling better when awake. In fact, each day this week we have taken her out for a certain period of time: Sunday for a drive, Monday to her aunt's house (for several hours (!) during which she talked, watched TV, read a book to her 4-year-old cousin, etc.), Tuesday to the zoo, yesterday to Tel Aviv and today to the Botanic Garden. Today she actually was more tired than she had been in the last few days, but I hope that's temporary and the positive trend will continue.

We are continuing to reduce the dosage of her narcotic painkiller, and so far this has not resulted in an increase in pain. This means that she sleeps less than she did previously, though she still does sleep most of the time. The main problem is that, except in the late afternoon, if she wakes up for any length of time she wants to do something to pass the time but doesn't have the strength/patience to do anything. I wish I were more creative and could think of things for her to do that she could get into, but all my suggestions are met with "it's too much effort". This is, of course, most frustrating. What we really hope is that in the near future her condition will improve and stabilize to the point where she can again plan regular activity - study for one matriculation exam, even work or volunteer a couple of times a week. This will give her life some structure, as well as free us from the constant challenge of finding things for her to do.

As for the large picture, as I said so far her pain has not come back, which is a good sign. There are not many signs of GVH, but the little there is may indeed be working. God willing.

Shabbat Shalom.

Love, Sara

September 7, 2000
Unlike in my last message, I can't say that Timmi had a better week this week than last. She continues to experience weakness, nausea and vomiting, and often feels she has no strength to do anything. Much of our time and energy is spent trying to convince her to try and do something, empathizing with her when she feels depressed, and taking her places in the hope that she will feel good enough to enjoy the outing. It sometimes works, often doesn't. Very difficult; and who knows how long this will go on. She still has no pain, though, which is a blessing.

My week was somewhat better than last, as with the younger kids back at school I was able to taste "real" life, which I haven't done for a long time. I mediated, volunteered at Na'amat and translated a little. I also exercised three times. As a result, my own mood was for the most part much better. I just hope I'll be able to impart some of it to Timmi.

Shabbat Shalom to all.

Love, Sara

September 22, 2000
I didn't write last week because it was much the same as the week before, with various ups and downs. Things started to improve last Friday, when Timmi started to feel somewhat stronger, and on Shabbateven visited with a friend, a thing which she hasn't done in months. The improvement lasted through Monday early afternoon; during the noon hours Daniel and I took her (in her wheelchair, of course) to see the Biblical Landscapes exhibition at the Israel Museum, which she enjoyed greatly, making detailed observations about the various paintings we saw. We were there for two hours, and saw and commented on every painting in the exhibition, and we really felt that things were starting to go in the right direction.

Then, Monday afternoon, Timmi felt a numbness in one of her fingers, which then spread to her entire right side. She was unable to use her hands (or even lift her arm) and couldn't stand on her feet. Worse, she was unable to speak, write or even point to letters to make words – she later told us that no sooner would she think of a word she wanted to say than the word would change in her head to something else. Needless to say, this shook and scared her and us very badly, and it was a huge relief when it went away after a few hours.

The next day, Tuesday, she had an EEG and a CT scan, the results of both of which were normal. Her doctor therefore thinks that what happened may probably be attributed to "neuritis", an inflammation of the nerves that sometimes affects people after a bone marrow transplant. This neuritis, if that is what she has, would also explain some of her other symptoms, such as muscle spasms - from which she suffers regularly, and more and more in recent times - and shaking. The good news is, of course, that it seems that Timora's neurological problems are not a result of a problem in her brain. The bad news is that no one knows exactly what causes the neuritis or how to treat it. Luckily, it does go away in most cases; no one can predict when.

Besides her neurological symptoms, Timora has been feeling steadily worse since Monday evening - weak, nauseated, stomach pains, vomiting, headaches, pains in her thighs (these last may be due to muscle atrophy), still can't eat or drink. She had a gastroendoscopy yesterday (Wednesday) in an attempt to understand her stomach problems. Nothing was seen in the endoscopy itself, but the doctor took biopsies and cultures from the stomach lining and we should have the results early next week.

Her liver functions are also getting steadily worse, and her white blood cell count continues to rise. Her doctor would like to do a biopsy of her liver to see whether the problems there (and perhaps at least some of her other problems as well) are due to GVH. The difficulty is that because of the damage to her liver, her blood clotting functions are also abnormal, and under those conditions it is impossible to do a biopsy. Catch 22.

She is again very depressed at her inability to do anything because of her physical condition, and as always frustrated by the ephemeral nature of all progress that she seems to make. It is very hard for us to do anything for her, which is heartbreaking for us. But we still hope that things will improve, if we figure out the causes of her present condition.

We are starting to make arrangements to have someone come in to be with her two mornings a week, so that we will both be free those days to work or do other things that need to get done; Kupat Holim (our HMO) will cover the cost. I just hope we find someone compatible with Timmi - she's not so easy to please as far as people outside the family are concerned. But having started getting out into the outside world again, I see how crucial working is to my morale; I am now mediating two cases and this has had a very positive effect on me. Work and exercise - those are the things that help me most at this point.

Shabbat Shalom to all of you, and if I don't write before then, Shana Tova.

Love,
Sara

October 1, 2005
I’m starting this post on Saturday evening, after Shabbat has gone out. My mood tends to get blue as the Sabbath draws to a close. Not surprisingly, many observant Jews feel sad as this time approaches. It’s never easy to leave behind the peace and pleasures of our weekly day of physical and spiritual rest, and face our re-entry into the rather frantic world of work and day-to-day obligations. For me, this feeling has been intensified over the past several years by the fear that I won’t be able to do what life demands of me. Worse, as I prepare to face the week, I’m haunted by the question whether there’s anything that’s truly worth doing. But my answer is always yes. Meaningful activity – being a mother to my children and a wife to Don, interacting with the others in my life and, now, preparing to enter a profession in which I’ll be able to fulfill the Jewish commandment to “repair the world” – not only keeps me going, but makes life worth living. I thank God every day for giving me meaningful work to do, and the strength with which to do it.

Five years ago, Timmi no longer belonged to any framework of regular activity. Her involvement with her drama group had ended with the group’s grand production (see “The High Point of a Life,” May 2005). She had finished taking those matriculation exams that she could manage for that academic year. Her class had graduated and the girls were starting their military or alternative national service. She was out of the hospital, still feeling awful from the treatment she’s been given, and with no goal to work toward that could distract her from her body’s slow deterioration. And so she entered a vicious downward spiral: as she weakened, she was able to engage in fewer activities, and as her days became emptier, she became still weaker, which meant that she had even less strength to do the things we tried to find to help her fill her time. From time to time, she rallied, and did as much as her body would allow her to do. But as time went by, those times became fewer and farther between.

Timmi had always been extremely active, involved in many areas all at once – music, writing, reading, drawing, joking, acting, interacting with her family and her peers, and so much more – and was always excited about learning new things. Even when she was hospitalized or home-bound due to her leukemia or the treatment for it, she kept as busy as her physical strength allowed. In the hospital we'd rent her a television (a novelty for her, as we've never had a TV at home), for when she was unable to read or talk with whoever was staying with her. When I was with her there, we'd watch together - and Timmi would always have something to say about the cultural and moral values reflected in whatever we were watching. She transformed even the silliest shows into learning opportunities. For example, she used South American telenovellas to start to teach herself Spanish, keeping by her bed a vocabulary list to which she would add new words every time she watched, and would occasionally speak to me in simple (sometimes broken) Spanish. When she was up to it, she played all kinds of games - puppet games with her older sisters, or dress-up, when she'd take a scarf, drape it over her hair and tie it under her chin like the mothers of some of the Arab children in the ward. (This last game reminded me of how when she was little she used to exchange shoes with her friends, and they'd pretend to be each other.) During her second illness, she not only did whatever schoolwork she could, but also started driving lessons and worked a few hours a week for the Israel office of the Anti-Defamation League.

But now, my heart broke slowly as she began to lose interest in the world around her, even in the things she had loved most passionately until then. When we tried playing her favorite records she asked us to stop, saying the noise disturbed her. She could no longer write stories or poetry, of course, nor could she even concentrate on movies or television. We bought her a new kitten, knowing how much she loved animals, and remembering how she used to spend hours playing with our first cat, Snow, who used to seek her out in order to sleep on her lap, or with her in bed. (She used to hold long conversations with the cat: “Snow,” she would croon. “Meow,” Snow would answer. “Snow,” she would repeat; “Meow,” Snow would again reply. The dialogue would go on like that: “Snow” “Meow;” “Snow,” “Meow;” until it would end with a long “Snooooooow,” and a final “Meooooooow.”) But even the new kitten failed to keep Timmi’s attention for more than a minute or two, and soon after it arrived, Timmi entered the hospital for the last time.

I’ve mentioned more than once that after Timmi died I went through a long period in which I also had no strength to do any but the most urgent tasks, and nothing seemed worth the effort. Like Timmi, I'd been a "doer" to the point of hyperactivity. I had my first baby during my second year in law school, my second a week after graduating, my third right after finishing a clerkship on the Federal Court of Appeals in San Fransisco - and moved to Israel a month later. Right after learning Hebrew, I started courses at Hebrew University toward a Masters degree in Jewish law (which I never completed because financial pressures required that I enter the work force). From there I went on to a very demanding professional life, having four more children along the way. So during the long stretch of lethargy I experienced after Timmi died, it felt as if I were not really living, or not really living as myself.

Thank God, I’ve regained much of my strength, and started on a very meaningful path in anticipation of a new career as a social worker. But I still tend to worry abount my energy level. While I was in New York for my studies this summer, I felt very anxious at first – would I really have the energy to complete the work for six courses in seven weeks? True, back in the old days I’d worked at a full-time-plus career while raising (together with Don) seven children. But those times were long gone; before leaving for New York I’d been barely able to work five hours a day at my job, and often had to leave non-urgent household business unattended to. How would I handle six hours a day of classes plus homework and two papers every week?

As the summer went by and I got into the routine, though, I discovered that I really was capable of doing what was required of me - and the very fact of being actively engaged in such a maningful and intensive project energized me. In a sense, I reversed the cycle that had held Timmi in its grip the last few months of her life: the more I did, the more energy I had, and the more strength I had the more I did. In fact, I've returned from New York with a sense that my life has finally become unstuck, and feeling – for the first time in many years – truly optimistic about the future.

Still, there are times when the old lethargy and sense of hopelessness take over. At those times, I get a glimpse of how Timmi must have felt during those last months: without meaningful activity, life itself feels meaningless. How incredibly difficult this must have been for Timmi, who had always been full of boundless energy, enthusiasm and plans for the future, and who had sought meaning in all aspects of her life and her world! The thought is really too painful for me to bear for long.

When I begin to feel weighed down by the memory of how Timmi’s life force slowly drained away, or by my own lack of strength or sense of meaninglessness, I pull myself out of it by finding something significant – however small – to do. This past Shabbat, for example, the blue feeling started to come over me as I was sitting with Shari, sharing the traditional Sabbath “third meal” in the late afternoon. Suddenly Shari said, “Let’s sing!” What a great idea, I said – and we agreed that it’s nearly always a great idea to sing. So we sang together the two songs with which Jews have traditionally bade the Sabbath farewell – Psalm 23 (The Lord is my Shepherd), and “Yedid Nefesh” (Friend of My Soul), a kind of love song to God. By the time we finished, the blues had left me, and I once again felt ready to use the strength I’d gathered over Shabbat to go out into the world and do what I must as a believing Jew, a mother, a wife, a student, and a friend.

I’m finishing this post just before the beginning of Rosh HaShana, the Jewish New Year. At this time of reflection and renewal, my wish is that God will give all of us the strength and the wisdom to fill our own lives with meaning, and help us to do the same for those around us.

Shana Tova – I wish all my readers a happy, healthy and sweet year.

No News and Good News

2005-09-26T07:25:00.000-07:00

August 17, 2000
There is not that much to report. Timmi returned to the hospital on Sunday for her release, and came home "finally" that evening; on Tuesday we were back in day care (routine). At home she has been sleeping a large part of the time, and when awake usually feels quite weak. She again can't keep much of anything down, which is a problem as she needs to take many pills every day (she gets her fluids and nutrition intravenously).

A positive take on all this is that Timmi's nausea, and perhaps her weakness as well, may very well be due to the poor present functioning of her liver, which in turn may be due to a certain level of GVH. And as we all know, GVH, while it can be extremely uncomfortable, is what we hope will put Timmi back into remission from her cancer. We don't know what is happening, but it is not unreasonable to believe and hope that she does have some GVH and that it may work against the cancer.

I have been in rather poor shape; I got some kind of respiratory virus last Friday morning (probably not coincidentally, the day after taking Timmi home), which then turned into asthma, and I am still not fully over it. I am of course very tired, and I must say that my stress level has been lower. I am starting to feel somewhat better, though, and hope to be back to "normal" within the next few days. The end of the summer break, if there is no school strike at its end, will also help.

Shabbat Shalom to all,
Sara

August 24, 2000
This week has been stable for Timmi, for better and for worse. For better, in that she still has no (or very little) pain despite continuing to reduce her dose of narcotic painkillers. She will continue taking the anti-inflammatory medicine that helped her so much when she was still hospitalized, as she does has quite a severe inflammation, probably in her joints, and possibly as a result of some level of GVH. Her blood tests are to a degree compatible with some GVH, so we are continuing to hope.

For worse, though, in that she still sleeps most of the time and feels quite awful when she is awake; she feels very weak and can hardly keep anything down. In addition, for the past few days she has been very depressed; nothing appeals to her, and she doesn't feel she has the strength to do anything - not even listen to music or watch a video. We hope that the depression is due to the reduction of her painkiller dosage, and not to something more long-term (though God knows she certainly has enough to be depressed about).

It is very painful to see the depression, as there is truly nothing we can do for her when she gets like this, other than be with her, and being with her does not, on the surface at least, seem to do much of anything (of course it would be much worse if she had no one to be with her). At least with physical pain, we can give her enough morphine to put her to sleep so she doesn't feel it. With depression, there is no such "easy" (ha!) way out. All we can do now is hope and pray it will be temporary.

I am for the most part feeling physically better than I did last week, though I am still quite exhausted. I hope within the next few days to be able to get back to fairly regular exercise.

Shabbat Shalom to all of you.

Love,
Sara

I just went out to the living room after sending out tonight's update, and found Timmi awake and in quite a good mood (though still down physically). This is the first time in several days that she is feeling this good emotionally, and I wanted to share it with you. Let's hope and pray it lasts!

September 26, 2005
It’s becoming harder to get myself to sit down and write this blog; you may have noticed that for some time I’ve been posting entries more seldom than I did at first. The reason is simple – it’s getting more difficult for me to reread, to process and to write about our life five years ago, as Timmi’s last chance came and went, and as she began her slow and gentle journey away from this world. It’s especially difficult for me to look back at that period through the prism of my present life, as I’ve been trying to do in this memoir and memorial. Comparing the two is sometimes just too painful.

Five years ago, I spent my time following the tiny day-to-day changes in Timmi’s condition and mood as one usually follows the news during a war or a hurricane; those changes were the most momentous events of Timmi’s life (and mine) at that time. If there were "big" things happening out there, we just weren't tuned in to them. In contrast, nowadays it seems as if every day brings news of very important life-events: my friends’ children are getting married and having babies; my own adult children are creating and deepening relationships with significant others and making their career choices. The young men and women of Timmi’s generation are now setting out on dynamic and exciting journeys that will shape their lives for decades to come. Part of me is joyful for and with them as they embark on their new paths. But part of me finds it very hard to watch these life-changes, knowing that Timmi will never experience them.

Tomorrow evening, I’ll attend the third wedding that’s taking place over a period of three weeks, of girls the age Timmi would be if she were alive today. The Shabbat before the most recent wedding, Talila, the young bride-to-be (the daughter of a very good friend) had a pre-wedding ceremony at my synagogue. I smiled with pleasure as Talila’s friends, relatives and then the bride herself were called up one after the other to the Torah. Afterwards, all of us threw candies, clapped, sang and danced around the Torah scroll. But as the women danced and sang, I suddenly had a picture of Timmi as she would look today - as I’d seen her in my dream (see “Dreaming,” August 2005) - reading from the Torah and singing and dancing with her friends. Tears of sorrow for my beautiful, lost daughter, mixed with my tears of happiness for Talila, began to work their way up from the pit of my stomach, spread like a burning liquid through my chest, and spilled out my eyes. When Talila’s mother offered me the honor of carrying the Torah scroll back to the Holy Ark, I was unable to accept, because my legs were buckling under me. It took me more than an hour to stop trembling.

Talila's wedding, like all religious Jewish weddings, was joyful beyond words. Have all of you out there been to a real Jewish wedding? The bridegroom, and then the bride, are accompanied to the wedding canopy not only by their parents, but also by their young friends, who sing, dance and clap to the accompaniment of musical instruments (traditionally clarinets and other woodwinds). The guests also sing and clap along to some parts of the ceremony itself. At the ceremony’s conclusion, the groom breaks the traditional glass, as a symbol of mourning and memory of the destruction of ancient Jerusalem.

The music then starts up again and the crowd parts as the new couple leaves the canopy to spend a short time alone before rejoining their guests for the festive meal. As the couple returns, the music and dancing gain in momentum until things get almost wild. The women dance with the bride and around the bride, the men dance with the groom and around the groom, and both are raised above the crowd on chairs and “dance” with each other, each holding the end of a handkerchief. As the atmosphere grows in hilarity, the guests dance, sing and perform tricks to amuse the young couple. When everyone is exhausted, the meal is served, after which everyone gets up for yet more dancing.

It’s a mitzvah to do all one can to make the bride and groom happy at their wedding, and joining in the dancing is part of this. Talila and her groom were radiant, and their joy contagious. Also, I love to dance. So it was with great pleasure that I got up to join the festivities. Around Talila was an inner circle of girls bursting with youth and energy, leaping and dancing passionately; wider circles of older women danced, somewhat more sedately, around them. As I joined one of the outer circles, I couldn’t help but share in the general elation at the young couple's happiness.

But then I was struck once again by a fleeting vision of a 23-year-old Timmi, dancing and singing her heart out together with these girls. And then another vision, even more ephemeral, passed before me: that of Timmi as she might have danced at her own wedding.

After that, I danced like a split personality – one Sara happy and grateful to have the privilege of taking part here and now in this lovely wedding, and the other Sara mourning the wedding that will never be. I danced a crazy person’s dance: two steps to your right – joy, two steps to your left – grief; right foot – laugh; left foot – sob; right – smile; left – cry. But I kept dancing.

Someone asked me, at the pre-wedding Torah reading, whether I would have come if I’d known that I’d end up crying. I answered, yes, I would: I do not want to run away from the happiness that exists in this world – I want to embrace it. I do not want to spend my life overcome with grief for what will never be. And I'm sure that Timmi herself wouldn't have wanted me to stay away from joyful occasions; to the contrary, when I join in to contribute to the happiness of those who were or might have today been her friends, I feel that in a sense I'm dancing on her behalf. At the same time, I don't want to run away from my deep sadness for Timmi and all she might have become. To do so would mean, in a sense, running from Timmi herself.

So I will continue to attend weddings, birth ceremonies and other celebrations - those of my friends’ children, of my children’s friends, and of other young people who should have been Timmi's peers - and, God willing, of my living children. I will continue to do my best to add my joy to theirs at their good fortune.

But a Jewish groom always breaks a glass under his wedding canopy in order to remind himself and all present that there is no happiness in this world that is not mixed with some sorrow. I myself will never again need this reminder; because I'll never again have news of any kind of Timmi’s life, my gladness at others’ good news will forever be tinged with sadness, and with more than a drop of longing.

Loving God - A Partial Response

2005-09-19T11:22:00.000-07:00

September 19, 2005
About two weeks ago, a reader who uses the name “Needsabetterjob” left the following comment on my post “Choosing Life, Choosing Faith” (the translations and explanations in square brackets are mine):

“I am still amazed at your continued adherence to all the religious minutae. After what you have been through how are you able to love Hashem [God]? I understand that you do, it is just that I know someone else who had a similar ordeal, that he lost his son around age 6-8. He had a very successful business and still does, but he divorced his wife within a year of the tragedy and then shortly after is living with a non-Jewish woman. He will not have anything to do with religion, even to the point if he is needed for a minyan [a quorum of ten, which is needed to pray publicly] he will not agree, he will not be part of a Mizuman [a quorum of three to lead Grace After Meals], etc...That is, he abandoned his closeness to Hashem. I am interested how you have taken an opposite approach to this man.I am asking because while I have not gone through anything remotely like your tragedy, I am having many difficulties in life, and feel often that Hashem is not with me.”

I admit, Needsabetterjob, that you’ve caught me out. I’ve fairly well avoided dealing directly with the question that you and so many others pose: that of my feelings toward a God who created a world in which there is so much suffering – and who doesn’t intervene when the innocent suffer. I’ve felt that this question is too big for me, and have approached it only obliquely in my posts. I’ve even wondered whether I would really dare tackle it by the time my blog is due to end (in January 2006, five years after Timmi’s death). But now that you’ve asked, I owe you – and perhaps myself – an articulate answer.

I’ve always believed that innocent suffering is THE theological problem in this world. My question, though, has never been, “Why am I suffering?” or why any particular person suffers, but rather has always been, “Why does any blameless person suffer?” In a sense, what my question really boils down to is “Why did God create an imperfect world?” I have no answer to this question, of course, and never will – certainly not in this life. And I see no point in expecting to understand something so deep and fundamental, or becoming angry that I can’t. Already in ancient times, the writer of the Book of Job saw any human attempt to understand the paradox of a just God allowing the innocent to suffer as futile: "It is hidden from the eyes of all the living... God understands the way to it, and He knows its source." Since that time, many minds much greater than mine have grappled with this question, and have not come up with any truly satisfactory solution.

Still, I do believe that I can respond – in part, at least – to the more intimate and personal question of how I can continue to love God even after what my family and I have been through.

Losing faith in God because I suffer would mean presupposing that if I and those I love lead a good life, evil will not befall us. I’m sure this is what your friend is feeling – why should I have anything to do with a God who didn't keep up His end of the bargain, and allowed my blameless child to suffer and die? But given that my basic theological question is “Why anyone?” rather than “Why me?”, my own expectation (if I had one), would be slightly different – I would believe that God has promised humankind that innocent people generally will never suffer, or will never suffer unjustly. If that were my basic belief, though, I would have lost my faith as soon as I opened my eyes and looked around me at this world, in which innocent people – including millions of blameless children – have suffered and died since the beginning of human time.

Yes, I chose, and continue to choose, to be religiously observant despite this enormous philosophical difficulty. Why? Because loving God gives me what I need to survive emotionally in this cruel world; it keeps me from bitterness, cynicism and despair. From the Torah I learn that what I do every day matters to God. No matter what is happening in my life at any particular time, there is work for me to do in the world. In return for doing that work, God has promised me that He will give me the strength to go on: To go on living the life that He has mapped out for me in the Torah as it has been passed down through the centuries. Especially, to go on performing acts of lovingkindness, and raising my children to be the moral, compassionate people they have become, even after our devastating loss. (I find it very inspiring that Judaism requires even the poorest beggar to give a tenth of what he receives to charity.) In return for continuing to engage in those acts of kindness, I receive the love of those around me – which is, I believe, a reflection of God’s love. And God’s love gives me the resilience, as my friend Alan Busch has said (in his comment to my post “Knowing and Not Knowing”), to “glare at the face of adversity and assert: 'You will not get the better of me!'”

I don’t claim to have given here a fully adequate answer to the most difficult theological question ever posed. But I think that my very partial answer does explain why I persevere in Jewish observance - which I admit might well seem illogical or even preposterous to a person whose inner experience has been different from mine. As for the even more intimate question of loving God, my response - the only response I can give - is that I love God because I believe that the loving is mutual, and because I cannot imagine living in this world without that love.