Friends

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

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

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

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.