Monday, May 23, 2005

The Bare Necessities: Sleep

May 20, 2000
It's been a while since I last wrote, because for a while there was nothing new to write, really. In the last week or so, though, there has been good news and bad news.

The bad news is that it has become fairly clear that the pains that Timmi has been experiencing in her knees and shoulders are from tumors and not from GVH as we had hoped. The pains are getting worse, they feel like tumor pains (she knows what those feel like) and she has no other GVH symptoms. She is therefore reducing the doses of steroids and other anti-GVH medicine more quickly, which is good on the one hand because the steroids have very unpleasant side effects (she is all swollen with retained fluids, has trouble sleeping, is irritable etc) but hard in the short term on the other hand because she now feels quite weak from the sudden reduction in the dose. We hope, very hard, that the GVH will return but in the right amount this time (enough to fight the cancer but not enough to hospitalize her like last time).

The good news is that her steps to independence have greatly cheered her up. She really enjoys her driving lessons, and is fervently looking forward to being able to get around on her own. She is still studying for the matriculation exams she is taking, and has completed one with the second to be completed in the next few days.

I know many of you won't see this until Sunday, but Shabbat Shalom anyway.


May 22, 2005
I’m leaving Tuesday evening very late for New York, where I’ll begin my much-anticipated course of study for an MSW on June 1. I’m going a week before my classes are due to start because I want to be sure I’ll be sleeping normally by the time I start classes. I’m certainly not looking forward to jet lag. But after years of inability to sleep normally, I’m grateful to find myself confident that I will eventually get back to a reasonable sleep pattern – and even more so that I’ve established a reasonable sleep pattern to get back to.

Sleep is a place to which we should be able to escape when our daytime troubles feel overwhelming. It was therefore a cruel stroke of fate that Timmi’s illness and its treatment often made her unable to sleep. Whenever she was taking a course of steroids, for example, her brain would go into overdrive, and she’d be up for much of the night. During the harder times, she spent much of the day just waiting for night to come, only to find sleep impossible. Sometimes she would put calming music on and give herself a treatment of Reiki. The Reiki did help her relax some of the time, but ultimately it was no substitute for deep sleep.

I was and remain very much able to relate to Timmi’s sleep problems. I’ve always envied people who escape to sleep when life becomes too much for them. Since I was a child, one of the first signs that I’m in emotional trouble has been an inability to sleep. I remember telling my teacher, in third or fourth grade, that I was having a hard time getting to sleep at night; she suggested I take a bath rather than a shower in the evening. I tried, but it didn’t work, because my insomnia wasn't caused by my body’s inability to relax. I couldn't sleep due to my emotional reaction to the tensions between my parents, who separated two or three years later, and to my troubles at school, where my tendency to daydream and my general social cluelessness made me the target of physical and verbal abuse by my schoolmates.

I also remember how during the year before my father died, I slept through an entire unit of my geometry class – taught by Mr. Nadel, on whom I had a wild crush, and whose classes I wouldn't have purposely missed for anything – because sleep was eluding me at night.

After I had children, my problem was “solved” for a while. I'd fall into bed totally exhausted from a full day of work and child care, and fall asleep so quickly that I couldn’t remember my head hitting the pillow. Still, like most mothers, I'd wake up at a baby’s first cry or a child’s call of distress at night. (I’d then usually wake Don, who would uncomplainingly get up to bring the baby to nurse or see what the child needed; if I got out of bed I’d be awake for the rest of the night, whereas Don could drop back to sleep as soon as his task was finished.) In those days, I thought it was hard to have to wake up so often to tend to my children. Only now do I understand what a privilege it is to be able to respond to a child’s cry in the night and to soothe her distress with love and attention.

The worst awakening of my life was on January 5, 2001. I was taking a Friday afternoon nap after finishing preparations for Shabbat. For a full month, Timmi had been lying, very deeply sedated, in the hospital’s intensive care unit. The nurse on duty had insisted that we rest at home, and told us that the minute there was any change whatsoever, he would telephone us so we could rush to Timmi’s bedside. At about 3:00, I was awakened by the ring of the telephone. I heard Don say something like, “Ah,” or “Oh,” and I knew. I sat up, crying already, and Don came into the bedroom to tell me that Timmi had left this world.

For long months and years after that wake-up call, I continued to awaken at around 3:00 – but in the morning, not in the afternoon.
Often I woke even earlier in the night. Neither sleeping pills nor natural sleeping remedies had any effect. My earlier experience as a parent was turned on its head – then, I would snatch sleep when I could, during my rare free hours of the day and when no children needed me at night. Now, I had far too many empty hours, but was unable to use them to sleep. I would lie awake for hours, praying for sleep to come and deliver me from my constant awareness that my daughter was gone. Even more, I wanted desperately to dream of Timmi – if only to see her face again, even at the inevitable price of waking up and once more facing the reality of her loss. But most of the time sleep stayed away. When it did visit, it denied me both the dreams I’d hoped for and the rest I so badly needed.

By waking up in the middle of the night, was I reenacting that horrible Friday afternoon? Was I trying to feel close to Timmi by experiencing the restlessness that had plagued her for such long periods? Or was I, as the experts say, simply exhibiting one symptom of the depression into which my daughter’s death had plunged me? Perhaps all of these are true. But I think there is another reason as well. I believe that my wakefulness at night was a kind of vigilance – a way of trying to avoid falling asleep “on my watch,” as I had that terrible Friday afternoon.

As I've moved forward in my journey toward healing, my ability to sleep has slowly returned. At first, I was able to sleep for four hours straight, then five. Now, although I still wake before my alarm rings, I’m usually able to sleep for six hours in a row, and wake up most of the time actually feeling rested. On rare occasions (most often on Shabbat), I can even drop back to sleep again and get as much rest as most people do when they have the time to stay in bed.

I believe the main reason I’ve regained, to some extent, my ability to sleep is that Timmi is now a presence in my day-to-day life. I see her, happily, in my other children; I see her, sadly, in those of her friends with whom I still have a relationship; I see her in the poems, the deeds, and the love she left behind.

Today, I thank God that I can relax my vigil, and sleep without the constant terror that someone precious to me will disappear while I’m dreaming.

Tuesday, May 10, 2005


May 5, 2000
During the past week Timmi's mood continued to be somewhat unstable but the fluctuations were in a reasonably defined "band". Her physical symptoms also changed form day to day (and even more often). She increased the dose of her pain medication, and so her "background" pain situation improved somewhat, although it still hurts her when she moves in certain ways. She is also extremely tired some of the time, possibly due to the fact that she sleeps quite badly at night, as a result of the steroids she is taking. She has been reducing the dose of steroids, though, so we hope to eliminate them completely as soon as possible.

She has also been working a couple of hours a day a few days a week, at jobs she got through my request on one of the recent updates. She is sorting and filing all kinds of documents that collected over the years at one family's home, and she is typing data into a database at the ADL's office. She has also been trying to study for the two Bagruiot that she wants to take this year, but her sleepiness interferes much of the time. But in Israel, luckily, the opportunities to make up tests that one didn't take (or even improve grades, for that matter) are almost limitless.

We have also been thinking of several ways by which she can become more independent. One of her problems (and ours) is that she is so dependent on us to take her everywhere by car. So we have decided to make an exception to a family policy which discourages our kids from driving before the age of 21, and have her take driving lessons as soon as she feels up to it physically. She will also open a bank account, and receive her disability allowance independently of us, and will thus budget her own clothes, entertainment, etc. This plan made her feel more optimistic than she has in quite a while, as is extremely understandable. Imagine being over 17 and almost totally dependent on your parents! (Also imagine having such a dependent 17-year-old.)

Don and I have become quite exhausted over the past week. Because of Timmi's present situation, I cannot work outside the home more than a minimal amount, and so the entire burden of supporting the family has fallen on his shoulders. As a result, he stays up quite late at night working at his consulting business, and I do almost all the errands, household stuff and ferrying around of Timmi. This takes a physical and emotional toll on both of us. Good we have Shabbat!

Shabbat Shalom to all.


May 9, 2005
Right now we’re between Passover, the Jewish Festival of Freedom, and Yom HaAtzma’ut, Israel’s Independence Day. On Passover, the Children of Israel started their painful but immensely meaningful transition from their lives as slaves of a certain ethnic and religious group to their new identity as a distinct, independent people responsible for their own destiny. And Israel Independence Day marks the beginning of the Jewish people’s transformation from an ethnic and religious minority in the Diaspora to a nation with its own homeland.

I’m also about to embark on a journey that will bring with it a certain freedom; this summer I will live away from my family for the first time in 28 years – in a dormitory suite, almost like a single student. So it seems fitting to find now that my update of five years ago focused on Timmi’s need for a more independent life. But while for Timmi any independence she achieved was a pure blessing, I have more mixed feelings about some of the kinds of freedom I enjoy today.

Timmi was first diagnosed with cancer when she was twelve years old. Just when she should have started the process of separating from her mother and father, and of forming new and stronger bonds with her peers, she was suddenly thrown back into a kind of virtual babyhood, as she lost control of her life. She would lie in her hospital bed for hours, subject to the nurses’ and doctors’ day-to-day routines. Things – sometimes painful things – were done to her whether she wanted them done or not. There were long periods during which she couldn’t walk by herself, and some during which she couldn’t even feed herself, but had to be “fed” through a “Hickman,” a catheter inserted into an artery through her chest.

We tried our best to give Timmi as much control, or sense of control, as we possibly could. From the beginning, we discussed with her all the details of her diagnosis and treatment, sharing with her all the literature we were given to read about cancer in general and about leukemia in particular. Although it was we who decided on the course of her treatment, we were always careful to take her feelings and opinions into consideration. Later, she learned to perform (under our supervision) some of the technical tasks of her treatment. For example, after her first bone marrow transplant, when she was receiving medication intravenously at home, she learned to change the bags of fluids by herself; she also learned how to change the bandages on her Hickman. Anything she could possibly do for herself, she did.

But ultimately there was no getting around it – when she got sick, Timmi’s power to decide for herself was reduced to a small fraction of what it should have been for a healthy girl her age. She was acutely aware of the difference between herself and her peers which, of course, went far deeper than the degree of her independence. When she was in ninth grade, she wrote a poem expressing her frustration and longing.

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
That 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 might 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

Timmi was delighted when a time finally came when she was able to participate in normal activities together with her peers. Just a month after writing her poem, she went to that year’s pre-Passover Scouts trip. As a junior counselor, she accompanied the eighth-graders on a four-night “Sea to Sea” hike from the Mediterranean to the Kinneret (the Sea of Galilee), at the end of which they pledged loyalty to the Scouts movement and its ideals. She was thrilled to discover that she could once again move and use her body like the athletic girl she was before she became ill. She even took on extra tasks, like carrying the jerry-can around and making sure that everyone drank enough. She came back from that trip positively glowing, feeling that perhaps she really was about to to rejoin the stream of normal life.

A year later, Timmi started to feel the the pain that (we know now) signaled the return of her cancer. After that, although there were short periods during which she enjoyed a semblance of independence – such as those few months five years ago, when she was taking driving lessons and working a few hours a week – she was to need us to take care of her for the rest of her life.

Parallel to Timmi’s loss of independence, Don and I lost much of our own liberty. All our plans were subject to Timmi’s treatment schedule. There were long periods when neither of us could get to work every day, let alone go out to have fun. All those hours spent by Timmi’s bedside at the hospital and with her at home when she couldn’t attend school meant that we had less time, or no time, to spend on many of our normal, routine activities – even to spend with the other children. At the time, I missed having control of my own schedule, and the freedom of occasionally deciding to do something fun on the spur of the moment, much the same as I had felt when I'd had many small children to care for. But when our freedom was returned to us, it came at a horrific cost.

I remember a conversation I had many years ago with Veronica, a close friend, just after her mother had died only a few months after her father passed away. For years, her parents had been living with her and her family, and she had been spending more and more of her non-working hours caring for them. In my naiveté I remarked that, now that she had no one she needed to take care of, she was free to do all the things she hadn’t been able to do for so long. She replied sadly, “That’s exactly the problem – I have no one to take care of any more.”

I’m also reminded of the Polish-French writer-director Krzysztof Kieslowski’s extraordiary movie “Three Colors: Blue.” It’s the first in a trilogy of films named after the French flag – Blue, White and Red – with each color corresponding to one of the ideals of Liberty, Equality, and Fraternity. In his rendition of Liberty, Kieslowski did not choose to deal with the grand themes of political or national freedom. Instead, the film tells of Anna, who suddenly finds herself “free” of all bonds when her husband and child are killed in a car accident. This tragic independence ultimately turns into a deeper freedom, when she finally allows herself to love again.

Since Timmi left us, I feel a profound bond with the real-life Veronica and the fictional Anna. The emptiness of my days, after all the hours that I'd spent caring for Timmi all but overwhelmed me in the first months and years of my bereavement. I literally felt like a ship whose anchor had been cut away, leaving it adrift in uncharted waters. Even today, when I’m again able to enjoy my leisure hours, there is no doubt whatsoever that I’d give them up in a second if I could only have Timmi back.

At the same time, like Anna, and like Veronica (who has since found comfort in caring for the grandchildren with whom she has been blessed in the past few years), I’ve begun to find my way back from the despair of the sudden liberty that was thrust upon me when I no longer had my daughter to take care of. And my true liberation, much like Anna’s, has been internal. I no longer see freedom as the ability to do whatever I want to do, as the spirit takes me at a particular moment. I’m now extraordinarily grateful for the demands on my time and energy that inevitably attend my involvement in relationships – with my sister, with my friends, and above all with Don and my children.

True freedom, for me, is the privilege of submitting myself to the bonds of love.

Monday, May 02, 2005

The High Point of a Life

April 28, 2000
I hope all of you had a wonderful Pesach.

Timmi's performance went absolutely wonderfully, and she was on a high from the experience for a couple of days afterward. Happily for everyone who came only for Timmi, the play itself was also excellent and very well performed. (Timmi herself also shone, and it was extremely impressive, both for Timmi and for the other girls, how she was able to integrate into a fully finished production, which had in fact already been performed, in the space of only a couple of weeks.) I have heard only good feedback from everyone who was there. Thank all of you who came for helping to make it a truly memorable evening.

After the play was, of course, Pesach itself, and all of us enjoyed the Seder. Unfortunately, because of Timmi's health, we couldn't be sure it would go as planned so we were unable to invite guests. But our family is big enough, even without Sheila who had to stay in Boston for the holiday, to make quite a respectable group just by ourselves.

On Chol HaMoed* we went for two nights to the Holiday Inn in Haifa, and visited Caesaria, Zichron Ya’acov, Acre and the Haifa Science Museum. On the whole, Timmi enjoyed herself, but her mood was more unstable than usual during the trip, and little things annoyed her fairly easily. She and we are glad we went, though, even if it took a lot of effort to keep things going.

Altogether, Timmi's mood has been slipping somewhat. This may have a lot to do with the fact that physically, things are also getting harder for her. She has been more and more tired, and has been having significantly more pain, which we still don't know whether to attribute to her GVH or to her cancer. The decline in her mood is also aggravated, of course, by the fact that the fun things she had planned (the play and the trip) are now behind her, and so she and we need to find new things for her to look forward to. Matriculation exams are of course important, but hardly fun! Anyway, clearly it is very difficult, and in fact probably futile, to separate out the physical and psychological components of her situation.

Shabbat Shalom to all.

Much love,

*Chol HaMoed – the intermediate days of Passover.

May 2, 2005
It’s hard to believe that it’s already five years since Timmi appeared in the production that her drama class put on as their senior project. Participating in this production meant a great deal to Timmi, and she reveled in the sense of accomplishment and positive feedback that the performance brought her. The night of the production was one of the happiest of Timmi’s life. So why does looking back at that evening make me so sad?

The girls in Timmi’s high school drama program were the closest thing she had to a group of good friends, and to a source of peer support. Together with a professional playwright, the group created the ideas and script for their twelfth-grade play; Timmi participated whenever her health permitted. From the outset, the girls decided to structure the play in a way that took into account the fact that there was no way of knowing whether Timmi would be able to take part in the production. They wrote her an interesting and challenging part that could be eliminated if she was unable to appear when the play was performed.

In the event, the play was staged around Purim, while Timmi was hospitalized. As you can imagine, she was very disappointed to have missed the chance to perform. But after she regained enough of her strength to come back to school, the girls met among themselves and decided to give her that chance after all. Although they'd already come down from the high of the Purim performances, had forgotten some of their lines, and had other matriculation exams to study for, they decided to stage one more production, this time with Timmi’s part written back in. And this time, they would do it not at the school but in a commercial theater – and contribute the proceeds to the Israel Cancer Society. The girls approached the theater management and convinced them to donate the performance hall for that evening, and sold tickets to their families, friends and acquaintances (as did the members of our synagogue). Every single ticket was sold.

Timmi played the middle-aged, formerly glamorous and now-bitter owner of a cosmetics company. I can still see her in her elaborately styled platinum blond wig and sequined dress, a long cigarette holder between her fingers and a sardonic expression on her face. She performed with energy, verve and great wit, and when her turn came to take her bow, the audience gave her a standing ovation that lasted at least a full minute. They were applauding her performance, of course, but so much more – her courage, her tenacity, and her strength in the face of all that she’d been forced to go through. She drank up every second of it. It was, I believe, the high point of her life.

And where am I now, five years later?

On the first day of Passover, I found myself sitting in synagogue between two young women who had been Timmi’s friends. As I inevitably do, I began to wonder which of Timmi’s peers would be the first to marry. Just as I started to imagine how I would feel at such a wedding, the engagement of a third friend of Timmi’s was announced. So it’s started, I thought. Now will come the engagements, the weddings, the births, all those joyous occasions to which Timmi – like all young people – should rightfully have looked forward.

It’s simply not fair and not right that I know now, for a cold, hard fact, that Timmi’s performance marked the last time she was ever to feel pure joy in this world. That experience should have been only one of many high points in her life; I should not be able to look back now and say, “That was her happiest moment.” Even now, at the age of 50, I myself am looking ahead to new peaks of possible experience – studying for and working at a career that I truly love, seeing my children married, becoming a grandmother. How is it possible that by the age of 18, my daughter had already experienced her greatest happiness?

I’ve been having a very hard time the last few weeks getting myself to sit down and work on this blog. My mind simply doesn’t want to make those connections and associations between the past and the present that fuel my writing. I discard each idea I think of, until one sticks in my head long enough to develop into a post. Then, throughout the process of writing, I question whether I'm really saying something meaningful. Is it true, or am I just making it up because it sounds right? When I go back and read what I’ve posted, I see that what I’ve written does express where I am, and at least some of what I want to say. But the next time, I go through the same process over again.

I’ve told myself in the past that perhaps I’m running out of things to say, that I’m getting tired, that my creativity and insight are beginning to run dry. But now, after writing this entry, I’m quite sure the reason I’m finding it so hard to face my updates of five years ago, however upbeat they were at the time, is that the story gets progressively sadder from this point on. Timmi did experience other moments of happiness after her grand performance was behind her. But I’ve just finished writing about her very last sustained burst of joyful energy.

Still, as hard as it's becoming to write, I feel that Timmi’s story - all our family’s story – needs to be told. I pray that I will find the strength within myself to go on writing, and hope that you will not find it too difficult to go on reading, until the story of Timmi’s time on this Earth has ended.