Something to Do

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.