Monday, January 31, 2005

Pain and Poetry

January 20, 2000
This past week has been seriously difficult. Last Shabbat Timmi woke up in the middle of the night, in severe pain. We gave her painkillers that had worked in the past but were unable to control the pain through Motzei Shabbat, when we called Dr. Cherney, the pain specialist who helped us so much last summer and fall when Timmi was both in serious pain and very depressed. Since then we have been trying to eliminate the pain with progressively higher doses of narcotic painkillers, under Dr. Cherney's advice and supervision, of course. The pain is now almost under control, but since Sunday Timmi has been experiencing long periods of extreme drowsiness, hallucinations and confusion.

We were (and still are) very worried that the price of controlling the pain will be damage to Timmi's ability to function. There is a difference of opinion concerning the cause of the pain - Dr. Cherney believes that it is a side effect of a drug that Timmi received as part of the preparation for her transplant, in which case we may expect the pain to be relatively short-term. Professor Cividalli believes it to be a sign of GVH, in which case it could last quite a long time. Both doctors agree that the source of the pain is damage to the nerves of her feet and hands as a result of the transplant. Either way, we can't go on having Timmi unable to open her eyes for the better part of every day, so we feel as if we are between a rock and a hard place.

Today Timmi was hospitalized; it turned out that already as of Tuesday morning she was seriously dehydrated. The dehydration probably started last week, when she was nauseated and generally found it difficult to eat and drink. Her sleepiness then aggravated the problem, as (wonder of wonders) a sleeping person does not drink. Dehydration can be quite dangerous post-transplant, as the anti-rejection drug Cyclosporin that she is taking can damage the kidneys in the absence of sufficient hydration, and so she was supposed to be drinking more than usual. But it also turns out that dehydration can cause hallucinations and confusion! So it may turn out, once she has enough fluids in her, that it will be possible to find the combination and doses of painkillers that will enable us to control the pain without impairing her alertness. We certainly fervently hope so.

We hope that Timmi will be released from the hospital before Shabbat, but there is no guarantee. If she stays, Daniel will as usual stay with her in the hospital and I'll hold the fort here with the other kids.

Shabbat Shalom to all.

January 31, 2005
There is no life without pain. But there is pain, and there is pain. I truly do not have the words to express what it was like to see my daughter in prolonged agony. The waiting I wrote about in my last post turned into torture when what we were waiting for was relief from Timmi's intense suffering. All I can really say, right at this moment, is that when I signed up to be a mother, no one told me about that part of the job.

But Timmi did have words; she created poetry. After Timmi died, we found a neatly hand-written collection entitled “Mostly Poems.” We also found in her desk previous drafts of some of the poems, and so it was clear to us that in her last months she had decided on a final version, and then edited the collection, arranging the poems according to the date she’d written them. I think she did this, either deliberately or subconsciously, in order to leave them for us, much as she did the photo album that she arranged, and on the cover of which she wrote:

(First Album)

It’s excruciating for me to read the poems that speak of the physical, emotional and spiritual pain that Timmi suffered. Nonetheless, I read them from time to time, as do Don and my other children. Just as pain became part of Timmi's life, the poems are part of who she was. There are times I can’t bear to look back at what she went through in her young life – six months of increasing pain before she was diagnosed; intense pain caused by chemotherapy and by bone marrow transplants; a return to intense pain with each relapse of the cancer; and throughout, bouts of depression and anxiety. It would be wonderful to forget Timmi’s suffering, and remember only the good times we had together. But I don’t want to forget any piece of Timmi. And so I read all of her poems and, together with my own sadness and pain in entering into the darker parts of her world, am amazed by her ability to put into words fears and experiences that are truly unspeakable.

I’ve loosely translated some of Timmi’s poems into English. I’ve tried to preserve the poems’ meter, but haven’t attempted to reproduce their rhyme schemes. (Another poem appears in “Yahrzeit,” December 2004.)

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.

This was the next update that I sent out to our community, two days after the one I've reproduced above:

January 22, 2000
Because my last update contained some very upsetting developments, I am writing this to let all of you know that things improved greatly over Shabbat. The most important news is that the hydration she has received until now has apparently cured the hallucination and confusion problem, so it seems that it wasn't caused by her pain medicines after all – just coincidentally she was increasing her dose of the medicines as she was getting progressively dehydrated. She is now either asleep or awake - no more strange in-between state. This is, of course, a great relief, although there was some comic relief in listening to her when she was hallucinating (at one point she asked me if I had eaten the four frogs I was supposed to eat). Also, her pain is now pretty much under control.

The less good news is that she will have to stay in the hospital for another couple of days at least. While the hydration has caused her biochemistry to improve, she still does not have normal function in her kidneys, which were seriously damaged (probably not permanently) by the dehydration and by the high level of Cyclosporin in her blood. Therefore, she will need to remain in the hospital for at least 24 hours after her biochemistry returns to normal.

Thank you all for your concern and hopefully by next Shabbat she will be out of the hospital and feeling much better.

No, there is no life without pain. What we can hope for is to be able to transform that unavoidable suffering into our own private poetry. And if, unlike Timmi, we lack the words to pour ourselves onto the written page, we can try to make our lives into poems of lovingkindness and empathy, by doing our best to ease even a small bit of the pain that afflicts so much of this world.

Sunday, January 30, 2005


January 13, 2000
Timmi was released from the hospital on Monday, with mostly normal blood counts. Altogether she was hospitalized for the transplant for less than four weeks - less than half the time she was hospitalized the first time. So as far as the engraftment goes, the transplant was a total success. As I said, now we have to see about GVH and, most important, what effect all this will have on her cancer. For the first month she will not be able to go to enclosed public places (restaurants, movies, school etc.) but after that we hope she will start to be able to go places with a mask.

Paradoxically, coming home was somewhat difficult for Timmi. As long as she was undergoing treatment in the hospital or waiting there for her blood counts to rise sufficiently to enable her to leave, we were focused on short-term goals (sometimes as short term as getting through the next few hours). Now, however, we are in the position of waiting for something which will come, if at all, at some unspecified time, and which will take an unspecified form. She has no idea from one day to the next how she will feel, and however she feels has no way of knowing how long it will last. Also, she is worried about what she will do at home - again, in the hospital she has a certain routine that she developed over the years, but at home there is always the question of what will I do today. At home there is the expectation that life will somehow be "normal", but of course in these circumstances it is very far from a usual life for someone her age. What it seems we will do is schedule a few possible activities for each day, and if she doesn't feel up to a particular activity we will defer it to the next day.

So far since she's been home she has not felt well – different symptoms each day. Sometimes she's not up to doing anything, so she listens to music or, if she's feeling a bit stronger, watches a video. In the afternoon she has generally felt somewhat stronger, so for the last two days she has helped David with a project that he has to do for school. Her Reiki teacher was here yesterday, and next week I hope to take her to the teacher's home for treatments and, if she's up to it, she will learn the second level of Reiki. She may also start some projects in art and in music, again subject to how she's feeling. And she hopes to be able to catch up on at least one or two of her subjects at school, in order to finish twelfth grade with as many matriculation exams as possible (she may possibly be able to finish with Hebrew, Literature and Theater, with some small possibility of Bible).

Her mood, which was down when we first came home, has improved somewhat, and she is now enjoying the family life part of being home. She is discouraged by her physical state (for example, it is quite hard for her to eat, which takes a pretty big chunk of pleasure out of life) but is trying her best to deal with life as it is right now.

Shabbat Shalom to all.


January 29, 2005
A short time ago, I got some very good news - I’ve been accepted to the MSW program that I hope to attend in New York beginning this summer. That brought me one step closer to realizing my plan – hope, really – of becoming a social worker and working with families with a seriously ill child (see “Plans,” October 2004). But financial or family reasons could still prevent me from enrolling in the program. So now I’m waiting to see whether I’ll really be able to do it. It’s not easy to wait, because an important aspect of my future is at stake – the possibility of finally working at a profession that truly suits me, and through which (I believe) I can make a real contribution. In the meantime, I’m trying my best, as Timmi did, “to deal with life as it is right now.”

My professional life was always very important to me. I always knew that what I wanted to do was help make people’s lives a bit better; the only question was how I would go about it. When I discovered that I have a flair for legal reasoning, I decided to go into the field of public interest law – that is, to work for justice for the poor and oppressed. I was going to fight discrimination and exploitation, and make the world a better place. I saw this as a kind of Tikkun Olam (“repairing the world”), which is one of the Jewish religion’s greatest imperatives.

Sadly for me, when I moved to Israel I found that at that time there was no real possibility for me of a career in public interest law. Very few paying jobs existed; I now like to joke to a friend who served for about twenty years as the only permanently-employed litigator for the Association for Civil Rights in Israel that there was exactly one public interest law job in the country when I got here in 1980, and he'd taken it. An exaggeration, but the order of magnitude was about right. And as I needed to help support my family (we came with three children and were planning to have more), volunteering my time wasn’t an option.

So I settled for other jobs, first at a private firm and then in government. I found it hard to get excited about what I was doing in the private sector – a friend once described the typical case in corporate law as “one rich deadbeat suing another rich deadbeat.” But I consoled myself with the fact that the work was at least intellectually stimulating. When I worked for the government, I was involved in several projects that benefited consumers, so it felt a bit like the kind of law I’d hoped to practice. Though it wasn’t what I had dreamed of, it was for the general good and supported my family. I might have stayed on, were it not for the emotional earthquake of Timmi’s illness.

Timmi’s cancer and our family’s experiences made my priorities much clearer to me. I could no longer sit at a meeting, for example, without wondering, “What am I doing here?” After living with so much suffering, I realized that I could no longer relate to business or regulatory issues. What I needed - still need - is to work at a profession in which I may help other people cope with the kind of pain that our family had to go through.

I left law toward the end of Timmi’s first remission. I now work as a mediator, mostly for divorcing couples, and as a grant writer, helping non-profit organizations raise money for the good work they do. But these are temporary solutions, work that I do while I’m waiting to start my “real” professional life. True, my fundraising efforts have indirectly helped disadvantaged Israelis; but I’d much rather be working with them face to face. As a mediator, I help individual couples find a way minimize the trauma to their families during and after a divorce; but what I truly want to do is help families weather the hardest of times together, and build strong relationships with one another.

Thus, my fervent hopes for a career change. But my hope to become a social worker isn’t only about personal fulfillment. I truly believe that, having myself gone through six years of coping with Timmi's illness and its repercussions for our family, I’ll be able to help families in a similar position in ways that others perhaps cannot.

As always, though, life gives no guarantees, and there's a real possibility that things won't work out. Surely I, of all people, should know that. From the time Timmi’s symptoms first appeared, our family spent years waiting. We waited months for a diagnosis. We waited to see if treatment would put her into remission. Whenever she underwent a course of chemotherapy, we waited for the fevers that inevitably followed. We waited to see what side-effects her treatments would have, and how severe they would be. We waited to see if her transplants would produce the right level of Graft Versus Host Disease – too little and the cancer could come back, too much and the GVH could disable or kill her.

For years, we waited to see if Timmi's leukemia would return. We’d been told that after two years of clean tests, we could assume she’d been cured. We waited an extra year for good measure, and began to think that we might be able to start to relax. We even held a small ceremony at our synagogue to thank our community for all its support during Timmi’s illness. A few weeks later, Timmi’s relapse was diagnosed.

Because I know that the worst did happen and could well happen again, my waiting will probably always be tinged with anxiety. But I've learned to keep my fears from overwhelming me. Now, I concentrate on trying to make my life the best I can at any given moment. This focus is what made it possible for me to keep my emotional balance even in the face of the most frightening possibilities, and has enabled me to go on even after my long wait ended in tragedy.

So yes, what I’m waiting for right now is really very important to me. But I can face the chance that in the end my plans won't come to fruition, just as I managed to live for more than six years in the shadow of far worse possibilities. How? I try to focus on the present - on my relationships, obligations, problems and pleasures. And I remind myself that even if things don’t turn out the way I hope they will, life will continue to hold new possibilities: new friends, grandchildren, perhaps even work in a field that I haven’t yet considered. In the meantime, I’ll try my best to wait patiently.

Monday, January 24, 2005

The Bare Necessities: Fun

January 8, 2000
Shavua Tov to everyone!

Last week was more difficult for Timmi than the week before, but the medical news, so far as the success of the transplant is concerned, is excellent - her white blood cell count went up so quickly that as of Friday she is no longer in isolation, although still hospitalized. In other words, it is quite clear that the transplant "took".

Physically, Timmi suffered much more than the week before, but still not nearly as much as during the first transplant. (She herself never loses sight of this and is quite grateful that things are not as bad as she had feared.) She had (still has, to some degree) mucositis, or damage by the chemical preparation for the transplant, in the mucous membranes of her throat and mouth, which was painful and made it very hard to swallow. In addition, she had various digestive tract problems, and often felt quite weak. All this was up and down, however - Thursday, for example, she felt really quite good and was very active, and then on Friday all her muscles started hurting and she felt dizzy, weak and nauseated. Then on Shabbat she felt better again. We need a lot of patience for this stuff.

Through all this, her mood has been remarkably good - serene is the word, I think. Whenever she felt relatively strong, she insisted on doing everything for herself, getting up and showering without assistance, for example. She also was as active as she could be – one day she helped Tehila E. (Sidra's wonderful daughter, who works at the hospital and has become good friends with Timmi) study for her psychometric exam, and another day gave Tehila a Reiki treatment! On Thursday we listened to jazz (especially Louis Armstrong - now, that would cheer anyone up!), and danced to it (Timmi danced sitting up in bed, with her upper body) and she read me two chapters from Khalil Gibran's The Prophet. She really seems to appreciate what there is to appreciate about life - one day she told Daniel how good it is to have people that love her. Altogether, she thinks and talks a great deal how love is really the most important thing in life. She certainly won't get an argument from me.

Now, we wait for the crucial news - whether and how much GVH there will be, and whether the treatment will be effective against the cancer. As I said, patience.


January 24, 2005
This evening, Don and I celebrated the Israeli holiday of Tu B’Shvat with several of our children. Originally set as the date by which we determine a tree’s age in order to know when its fruit is first permitted to us by Biblical law, this day has evolved in Israel into a celebration of the natural world. In accordance with the local custom, we ate fruits (both native to the Land of Israel and introduced here in modern times) and nuts, and sang songs about the land and its bounty.

Well, at first songs about the land itself, then songs containing any reference to any part of the land (including a couple of spirituals about the River Jordan). This reminded us of other songs we used to sing together when the children were young, and we enthusiastically sang those too. I then went a step further and put on a couple of records we used to play for the children when they were small, and we all joined in, singing and dancing along with the songs and listening raptly to the stories. Although the evening had started out with some strain between me and one of the older girls, the tension melted away as soon as we started singing together. Things got more raucous as the evening advanced, and we ended up having a truly wonderful time. Even better, for much of the evening it felt to me as if Timmi were also joining in.

It’s easy, with the myriad and sometimes conflicting obligations of modern living, to see fun as a luxury. Many of us do things just for the fun of it only when we’ve “earned” that right by taking care of all of our (supposedly) more serious and important business. But I’ve learned that fun is not a prize that we may allow ourselves to enjoy only if we’ve behaved well. Fun is definitely one of life’s necessities!

I think this is especially true of children who have disabilities or diseases that harm their quality of life. Fun takes them out of their bodies for a while, allows them a kind of breather from their troubles. Some people even hold that fun can give sick children more time. I don’t know if that’s true, but there’s no doubt that, at the very least, fun made Timmi’s too-short time in this world much happier.

Don and I spent a lot of time, energy and other resources arranging trips, outings, movies, concerts, plays – anything that Timmi might enjoy. Others helped as well, especially the dedicated people at Zichron Menachem, an organization founded by Chaim and Miri Ehrenthal in memory of their son Menachem who died of cancer after more than ten years of struggle. They run camps and a daytime center, persuade performers (well-known singers, magicians, you name it) to appear for the children, send volunteers into the hospitals to play with the children, throw parties in and outside of the hospital, and generally do everything in their power to show the kids a good time. Thanks to Miri and Chaim, Timmi rode horses and donkeys, drove mini-tractors, flew in a helicopter (several times!), water-skied in Eilat, and who knows what-all. With the other Zichron Menachem children, she visited the ancient city of Petra in Jordan. (That trip was jointly sponsored by Paul Newman and one of the princes of the Jordanian royal family; the prince also spent time with the children, pushing their wheelchairs and generally hanging with them.) Timmi would also have gone to Paris with Zichron Menachem, if she hadn’t had a terrible attack of pain just when they were due to leave, but I got to make that up to her (see “Paris”).

Through a different organization, Kav LeChaim (Lifeline), Timmi also attended Camp Simha (Happiness) in New York, where she had, by her own account, two of the best weeks of her life. A third organization, HaChaim (Life), took Timmi to London. She had quite a difficult time in London, as at the time she was taking very high doses of steroids, which badly affected both her body and her mood. But even so she brought home a few wonderful memories, most especially of the production of “The Lion King” that the children got to see on the London stage. I have several pictures of Timmi, her face and body completely bloated from the steroids, beaming as she stands arm in arm with each member of the cast. I feel at the same time like crying at the image of her distorted body, and laughing with her as she enjoys the musical and the backstage visit.

For quite a while after Timmi died, fun became off limits to our family. Our grief was just too strong. Timmi’s younger siblings often refused to join their friends in group activities. Like many surviving brothers and sisters, they felt that they weren’t entitled to have fun when their sister had so unfairly suffered and died. I also think that for all of us, for different periods of time, having fun felt like a betrayal. It took us a long time to understand that Timmi wouldn't have wanted us to remain joyless forever, and that enjoying life does not mean betraying her memory.

Nowadays, fun actually reminds me of Timmi. When she was small, she was one of the most lively, fun-loving children I’ve ever seen, dancing around the house, making up games with her friends, just generally sparkling like a little sprite. She was a wonderful mimic, and used to sing the songs and tell the stories we listened to this evening in all the voices on the records. After Timmi became ill, she preserved that fierce life-force, that desire to fully live her life and get the most out of it. However hard things got for her, there were always some moments when that life-force would break through and transport her out of her pain. People often ask themselves, “How can these children take it?” Fun is one of the answers. Timmi's ability to enjoy herself, even for a few minutes at a time, helped her to go on without succumbing to despair.

As time passes, and Timmi’s life gradually takes a greater place in my consciousness than do her suffering and death, my own capacity for enjoying life is gradually growing. And, in turn, as I allow myself more fun, my memories of Timmi become happier and happier. Timmi once expressed her fear that she was disappearing, that her personality was becoming nothing more than the cancer that was eating her from within. The last thing she would have wanted would have been for us to remember her only in her illness and death - that would mean the cancer had won. But the true Timmi didn’t at all disappear as she had feared. She is present every time we do something that calls to mind the joyful times we had together with her.

And so, as our family eats, sings and dances with gusto in celebration of God’s gift to humanity of the many and diverse forms of life that make up the natural world, we’re also celebrating that special and irreplaceable life that was Timmi’s.

Sunday, January 16, 2005


December 30, 1999
Timmi's bone marrow transplant took place in two parts, on Sunday and on Monday. The transplant itself went exceedingly well, with no adverse effects for Timmi. This was a true relief for all of us, as we remembered how during the first transplant in 1995 Timmi felt so awful that she just slept through it in a fog of morphine. This time, though, she received the cells and didn't feel a thing. The donation was harder on Shari than we had expected, though - her veins are not so great, and so while the time she spent on the machine separating her bone marrow cells from the other parts of her blood was better than having the marrow removed the old-fashioned way (directly from the bone under general anesthesia), it was quite uncomfortable for her. The good part for her, though, besides her happiness at being able to contribute to Timmi's treatment, is that once off the machine the second time she immediately started to feel better; now she is fine. Lisa, on the other hand, had pain for several months after donating in 1995.

Timmi has so far continued to feel quite impressively fine, with some weakness and a little pain (which is easily taken care of by the morphine) but otherwise quite alert, with a good mood and even a good appetite. Things should just continue this way.

The next stage is to see next week whether her blood counts start going up. Actually they are not at zero now, but my understanding is that they can still fluctuate, and what we will be looking for is a steady upward trend. With the rising blood count we will be looking for signs of GVH (Graft Versus Host Disease), of which we want enough to fight the cancer but not too much, which could be fatal or seriously disabling.

Anyway, as I mentioned our main feeling concerning the immediate situation is relief, and hope that the process will continue not to be too hard on her.

Shabbat Shalom -

January 14, 2005
It’s toward the end of Friday afternoon, and Shabbat is approaching. Shari is cleaning the house, and the radio is playing oldies, both in Hebrew and in English. Aimee is also at home now, having made the soup while I did the other Shabbat cooking. Don just returned from the gym, and is beginning to braid the Challah* that he bakes every Friday. Just a humdrum kind of day, with nothing special or exciting happening. But I feel a strong sense of serenity and wellbeing, and I know why. It’s because I’m sharing the day with my family.

When I was growing up I never dreamed that one day I’d have seven children. So much work! So many problems to worry about! So many complicated family relationships! But what I didn’t know then was how each child would enrich my world. Coming from a rather traumatized family, I had no idea of the extent to which my home would become a haven. Our home has been a demanding haven, with problems and tensions that we can’t always resolve. But it’s also been the only place where I've been able to find true peace after the earthquake of Timmi’s death.

Timmi, I’m told by her therapist, felt very much surrounded by love in the family. There were many times when the cancer and the medications she took to fight it caused her to become depressed or anxious, or otherwise negatively affected her emotional state. Then, she would sometimes fall into despair and feel abandoned by the world. But the love she received from her family helped her through these times. This was even more important when she felt cut off from other girls her age. At home, she could always express herself freely, even if what she had to say sometimes was very, very hard to hear. She didn’t have to worry that she’d scare us away.

It’s common to speak of families as “sharing blood,” but the metaphor literally described our experience. Three(!) of Timmi’s sisters had bone marrow that matched hers – Lisa, Shari and Elaine. Lisa and Shari were able to give Timmi an extra chance at life by substituting their healthy bone marrow for hers. Both felt it was a true privilege. Elaine was very disappointed when we didn’t use her bone marrow in either transplant, and Sheila, Aimee and Danny were upset that their bone marrow didn’t match Timmi’s. All wanted so much to contribute part of their own bodies to our attempts to save her. What they didn't understand then was that just by loving Timmi they were already doing a huge amount to sustain her, even if her despair with the world sometimes spilled over into her relationships with them.

After Timmi died, and we sat for seven days in a house that sometimes felt like Grand Central Station – with people coming all day to bring us food, to talk, and just to sit with us – those times that we had alone together felt like precious islands of tranquility. In fact, there was a very long period when the only moments I felt any kind of peace at all were when all my surviving children were present together with me in the house – preferably in the same room. The children felt the same – as Lisa said, we felt safe when we were together. In many ways, that's still how it is for me.

True, it’s when we’re all together that I feel Timmi’s absence most. And it's a terrible thing not to be able to look around me and say, here I am with my whole family. Our family can never again be truly whole. But I believe that when people have deeply loved each other, each leaves a part of herself with the others. Just as Lisa and Shari shared with Timmi the deepest part of their physical selves, each of us gave Timmi a part of our spiritual core – and received a portion of her spirit in return. And so, paradoxically, it’s when all of us are together and Timmi’s absence is felt the most painfully that I feel – as my friend Robert Avrech says of his own precious son Ariel in his blog Seraphic Secret** – that her absence most becomes presence.

Of course, as in any family, we and our children live with ongoing tensions and arguments, and Don and I spend a great deal of time and energy taking care of the children’s physical and emotional health and worrying about their future. These problems are all the more complex, given that there are so many different lives and relationships to take into account. But – and this is the most important thing – each member of our family carries a piece of all the others, including Timmi, inside. And so when I'm with Don and my children, who shared such a deep love with Timmi, I feel most deeply the presence of that part of her essence that she left behind.

*Challah – loaves of special bread that Jews eat at their Shabbat meals.
** See the Links section of this blog.

Saturday, January 08, 2005


December 26, 1999
Since last Friday (December 17) Timmi has been sleeping in the hospital, and is in "isolation". This is not as scary as it sounds; all it means is that she should not have too many visitors at once, and that whoever goes into her room should wear a mask and wash hands first. Also, no flowers and no food from restaurants. We are now at day "minus one" or "minus two", which means that the transplant itself will happen tomorrow and/or Monday. So far the preparatory drugs, although they are purposely destroying her immune system, are causing far fewer side effects than she had the first transplant around. This means that she is feeling relatively energetic, and her mood has been quite good. There was one day that she received a particularly nasty drug and felt quite awful, but got morphine which helped her get through pretty reasonably. Also, there were two days in a row when she had to take 120(!) pills each day, which was no fun. But Friday morning she managed to spend about two hours working on the Escher jigsaw puzzle that she is putting together, so as I said she's in pretty good shape. Shabbat also went relatively well, with Don as usual staying with her in the hospital.

By the way, Don slept there for seven out of the eight nights she has so far been hospitalized, because flu season made Shari and Ma'ayan (a friend of Lisa’s who sometimes sleeps with Timmi at the hospital) unable to be with Timmi. The coming week looks to be easier from that point of view, although if things don't go well we may decide that a parent should be there. As for me, I am quite tired, as I spend just about all day every day in the hospital. Right now my life is paradoxically slow but stressed - there is not that much for me to actually do at the hospital, although I need to be there, but I leave each evening feeling exhausted. Shabbat was nice, though, and I feel more rested now.

Thank you all for your continued love and support. Shavua Tov.*


*Shavua Tov – Have a good week.

January 7, 2005
The outpouring of concern and aid to the victims of last week’s tragic tsunami makes me think again how extreme situations often bring people to incredible levels of hesed (lovingkindness). Our family certainly experienced a great deal of hesed while Timmi was sick. I’ve already written about the love and assistance we received from our religious community.* But while many people did a great deal for Timmi and our family during her illness, there were some who went to a huge amount of trouble to help us all get though those terrible times.

There was Debbie G., who arranged the logistics of all the help we received from our community, from Shabbat meals to rides to the hospital. There was my close friend Tova, whom I could always call (even at the last minute) if Timmi was to be hospitalized over the weekend, and she would host me and whatever children were at home for a Shabbat meal. There was also Ma’ayan, who slept several times with Timmi in the hospital, despite the emotional and physical difficulties of spending time in the children’s cancer ward.

Don, of course, spent innumerable nights in the hospital, closely followed Timmi’s nursing care to make sure she was getting the correct medications at the correct times, and did a million other things that a devoted parent does for a seriously ill child. Lisa freely gave her own bone marrow in the hope that it would save Timmi, and suffered pain for several months afterward (more about that in my next post). Don’s extended family also made great efforts to help in any way they could. Don’s brother’s wife, Malka, for example, worked at the hospital and visited Timmi just about every single day that Timmi was hospitalized. Malka also used her connections in the hospital to ensure that Timmi always got the best care, and once even arranged for some surgery that Timmi needed to be performed free of charge by a senior surgeon at a private hospital. Timmi’s grandmother (Don’s mother), who was not in good health at the time and rarely left her home city, took three buses in each direction almost every week to visit Timmi during her first illness.

But it was Shari – two years older than Timmi, and the sister closest to her (in age and in other ways) – who did things for Timmi that went way beyond what a sister (and a teenager at that) might have been expected to do. In fact, in all the time I was with Timmi in the hospital, I never saw another sick child’s sister or brother do as much for the child as Shari did for Timmi.

Shari slept at the hospital a good number of the nights Timmi was hospitalized, both during Timmi’s first illness (when Shari was only 14) and after her relapse. She and Timmi used to stay up late giggling watching TV and eating together (if Timmi could eat) all the candy and other junk people brought Timmi as gifts. Shari was very competent, knowing exactly how to react and when to call the nurse if there was some special problem. Also, she could sleep just about anywhere, which was one of the reasons she slept with Timmi at the hospital so much of the time. A hospital is a very noisy place at night, with machines beeping, nurses and parents calling to each other, and other children in the room receiving urgent medical attention at all hours of the night. Shari was able to sleep through it all. She slept so well, in fact, that she just about never got up early enough to make it to school on time, which I suppose was an advantage as far as she was concerned – the perfect excuse to be late to school!

The only problem with Shari’s sleeping pattern was that she slept so deeply that Timmi couldn’t wake her up if she needed help in the middle of the night. The two of them eventually solved the problem by deciding that Timmi would wake Shari by throwing a shoe or some other object at her. What can I say? It worked.

Shari’s willingness to be awakened in the middle of the night by having a shoe thrown at her was only one manifestation of her exceptional kindness to Timmi. She was always willing to run and do just about any errand, whether Timmi was in the hospital or at home. She spent a huge amount of time with her, often missing outings with her own friends, when Timmi seemed lonely.

The story that best expresses Shari’s lovingkindness toward Timmi, I think, took place during first series of hospitalizations. Timmi’s grandmother had brought her some special stones (I remember one was a “Tiger’s Eye”) that are said to have special healing powers. Timmi, who loved her grandmother very much, wanted the stones near her at all times, and kept them in the pocket of her hospital pajamas. One morning, the nurse brought Timmi a new pair of pajamas so that the old one could be laundered. After the pajamas were taken away, Timmi realized that the stones had been sent to the laundry as well, and became extremely distressed.

Shari simply went to the hospital laundry room. She wasn’t put off by the hundreds of identical, dirty pajamas and hospital gowns piled on the floor of the huge room, but went through the pockets of every pair of pajamas until she found the stones and returned them to Timmi.

I believe very strongly that loving acts of kindness give not only to the people to whom they’re directed, but also to those who perform them. I saw a touching example of this two days ago, when I paid a condolence call to Charlie G., whose 38-year-old daughter Elisheva died a week ago after a short and brutal illness. I was sitting with him listening to him speak about his daughter, who was a writer and an actress, as Timmi had aspired to be. A young man came over and introduced himself as one of Elisheva’s creative writing students. As he spoke of her, he was overcome by sadness and started crying. Charlie moved over to him, took his hand, looked into his eyes, and remained that way until the young man stopped weeping.

At first, I was uncomfortable with sight of Charlie comforting his daughter’s student, and thought the student self-centered for letting himself cry that way – after all, Charlie’s loss was so much greater! It reminded me very vividly of my own experiences of people coming to me in tears when Timmi was diagnosed and after she died, and my feelings when I found myself comforting them. Like Charlie, I’d find myself touching these people on the arm, sometimes stroking them, and smiling to let them know that I knew how they were feeling. There was a period when I resented this, feeling that it was unfair of these people to demand so much of my own terribly depleted store of energy.

But reflecting now on Charlie’s gesture, and on my own similar actions all those years ago, I see that there was something deeply healing in our ability to give strength to others even in the midst of our own unspeakable tragedy. Far from draining us, these acts really gave us strength and comfort when we most needed it. In comforting others, we were helping to heal ourselves.

In the end, and more than anything, it is lovingkindness – both to others and to ourselves – that can sustain us in a cruel world and help us become the best human beings that we can be, even at the blackest of times.

* See “Community,” October 2004.

Saturday, January 01, 2005

The Most Fitting Memorial

January 1, 2005
At my bereavement group’s meeting last week, the fact that I hadn’t attended the previous week due to Timmi’s yahrzeit sparked a discussion of memorial services, funerals and other ceremonies related to a loved one’s death. The discussion turned to the question: how do we perpetuate the memory of our departed? One group member, I’ll call him David, whose mother died 21 years ago when he was eleven years old, spoke of his plans to organize a gathering of people who had known his mother before he was born. At this gathering, David will listen to these friends’ and relatives’ memories of his mother and, perhaps, will ask questions about her life that he’ll never have the chance to ask his mother herself.

Another man, “Michael,” told us that before she died, his wife planned her own funeral and memorial service, which included a videotape she'd made in which she spoke to those present, and even sang – to the accompaniment of live musicians whom she'd requested be invited to the funeral. She also asked that trees be planted in her memory at the bird sanctuary in Jerusalem. Michael related that she'd expressed her wish that the anniversaries of her death be marked by a picnic under those trees. That is what Michael intends to do when her first yahrzeit comes around in a few months.

Although I write this blog in Timmi’s memory, and hope that in a small way I’m "bringing her to life” for my readers, and although the parochet** for the High Holidays that we donated to our synagogue now bears her name, these things were not the first that came to my mind when it was my turn to speak. What I said was that I feel that the most fitting and most important memorial to Timmi is what she left behind in the hearts of those that knew her. I was thinking of the many people who’ve told me how deeply Timmi affected them, but most especially of the gatherings that her high school classmates hold in her memory every year around her yahrzeit.

I’ve been present at the last two of these gatherings. Both times, the girls watched a videotape of a performance that Timmi had given in the framework of her drama class, studied one or more texts related to the performance, and discussed the texts in the light of the questions: What did Timmi teach us through her performances? What do we continue to learn from her today?

Last year, the girls screened a video of the monologue Timmi had created from the two stories in the Book of Genesis that tell of Hagar, the matriarch Sarah’s servant who bore Abraham’s first son Ishmael. Unusually, perhaps, for a religious Jewish girl, Timmi told Hagar’s story out of a deep identification with Hagar. She channeled into this monologue all of her own feelings of anger at a cruel fate, frustration at a life that was turning out to be so different from the one she’d envisioned, and pride at being who she was despite (because of?) that difference. The group then discussed the Biblical texts upon which the monologue was based; Timmi’s classmates felt that her performance taught them a great deal about empathy for the Other, and about how tragedy is tragedy no matter whom it befalls.

This year, the group watched the tape of Timmi’s rendition of Katharina in Shakespeare’s The Taming of the Shrew. She took several separate lines and speeches of Katharina’s and wove them into a seamless monologue. In the first section, Katharina comes in limping, crying, and begging for mercy from her husband, who is trying to starve her into becoming a submissive wife. As we watched this part, I think that all in the room remembered that Timmi's limp was genuine, as she performed this monologue after her leukemia had returned, when she was in a great deal of pain from the cancer’s spread.

The last part of Timmi’s monologue was extremely creative and original and, as with her Hagar performance, she used it to express many of her feelings about her own struggle. In her last speech, Katharina, who has seemingly been duly “tamed,” gives a long speech about the duties a wife owes her husband because it is he who goes out into the world and faces the cruel elements in order to support and shelter her. Timmi, however – without changing a word of this speech, the words of which have made many a modern feminist shudder – managed to turn it into a bitter protest against the fate of women forced to fit into their traditional roles. As she limped off the stage, it was clear that Timmi’s Katharina had not truly given in, and would find a way of getting her own back.

Many of Timmi’s classmates spoke of their memories of Timmi and what they felt she had given them. All felt that she had gone through her ordeal with incredible strength and grace, and even with an ironic sense of humor. One girl told a story that others had told me many times before, about how during a break she came back from the snack stand with a yellow ice pop. When reminded that yellow artificial food coloring could be dangerous, she replied, “So what’ll happen to me? I’ll get cancer?”

(I say “girls,” but I should really say “young women,” as Timmi’s classmates are now 22 years old, and some are married already. I think it’s still too hard for me to truly acknowledge that they have continued to grow into adulthood, and into a future that Timmi will never know.)

Watching these videos, like looking at Timmi’s pictures, is always a mixed experience for me. One the one hand, these images bring forth warm memories and gratitude that I have concrete objects that can help keep her alive in my heart. On the other hand, every time I watch or look, I’m wrenchingly reminded that there will be no more performances, no more pictures, no more poems. Is this the sum total of the human being that was my daughter?

But I’m glad I keep looking, because no, there is no fixed and immutable sum total. Even though Timmi is no longer with us, she's still teachig us. If, as she did, we can learn to channel our own pain into empathy for others; if we can refuse to submit to injustices that our society takes for granted; if we can take our own experience, no matter how hard, and use it to create works that enable others to see the world from a fresh and unusual perspective – that, I believe, will truly be Timmi’s most fitting memorial.

*See my previous post.
**Parochet – the curtain of the ark holding a synagogue’s Torah scrolls.