April 7, 2000
Timmi continues to do quite well, although her mood has been somewhat more unstable; it is easy at this point for her to go quite quickly from euphoria to extreme irritability. I hope as her physical condition stabilizes, her emotional state will as well. At any rate, most of the time she is quite cheerful, and is still busy will her plans. Her physical state has in fact been stable this week, with some GVH but not enough to bother her too much; when it does bother her she handles it quite well. We just hope the GVH is busy successfully fighting the cancer.
We are also happy to let you all know that on the Monday evening two days before the Seder (April 17), Timmi will be appearing in a production being staged by her Theater class from Pelech, and the public is invited. All the proceeds will go to the Society for the War on Cancer. The production will be at the Gerard Behar Center, at 8 or 8:30; full details will follow in a later update. In the meantime, save the evening for a nice break from Pesach* madness.
By the way, Timmi needs a cigarette holder as one of her props. Anyone out there have one or know where to get one?
After the production, Timmi will start studying her friends' notes from her Hebrew literature classes and intends to finish that matriculation exam. After that, we'll see. Does anyone know of a part-time, physically untiring job that she might do? She is extremely responsible and reliable, but has to have enough flexibility in case of medical problems. It would mean a lot to her, though, to start doing something "normal".
Shabbat Shalom to all.
Love,
Sara
*Pesach – Passover.
April 26, 2005
Like most other people of my generation and general background, I’ve spent much of my life looking to the future. Sometimes I’ve looked ahead with worry and dread; other times, with hope and anticipation. Both states of mind can be problematic. When I’ve been consumed by worry, this has kept me from appreciating and enjoying where I am at that particular moment (see “Living in the Moment,” August 2004). But constant anticipation of better things has it's price as well - on occasion, it's had the effect of keeping me from dealing effectively with the difficult realities of the here and now.
But it’s very, very important to look forward. If we don’t worry, we can’t prepare ourselves for what the future may hold. And life without hope for a better future – well, that would be terribly devastating to contemplate. And so we tell ourselves stories of a new and different life to come, tales with happy endings, and these daydreams help us bear up under the hardships with which we must struggle today.
The period leading up to Timmi’s dramatic performance just before Pesach five years ago was one of the happiest in her life (I’ll write more about the performance itself in my next post). She was busy with rehearsals, with her costume, and with letting the world know about the upcoming production. At the same time, she was planning and preparing for all kinds of other activities. She was planning to start driving lessons. She was making plans for taking some of her matriculation exams at the end of that academic year, and even looking for a part-time job. She truly felt that she would soon return to at least a semblance of normal life, that there was a real chance that the worst was behind her.
When I look back now at that time of excitement and anticipation, I’m very grateful for Timmi’s capacity for hope. How much harder life would have been for her had she given in to despair, had she not told herself that her life, which had been so very difficult until then, could and would change for the better. I believe that her capacity for happiness was directly related to this ability to look to the future rather than dwell on the past. In a certain sense, it was this hope that kept her going – kept her alive.
But today I know how Timmi’s story ended. Now, living with that knowledge, when loss and sadness threaten to overwhelm me it’s much harder than it once was to tell myself a tale with a happy ending (see “Losing My Innocence,” two posts before this one). And so, because escape into a fantasy future is no longer an option, I now find myself trying to create an alternative reality in a different way – by breathing new life into my past.
In recent years, I’ve spent much of my spare time thinking about and trying to find people I knew before I met Don and came to live in Israel, and to re-establish relationships with them. In some cases I’ve succeeded. I’m now back in occasional touch with my first childhood friend, with whom I’d lost contact about 23 years before we found each other (actually she found me, but I’ve been very eager to keep the new relationship going). I recently found and have started corresponding with a friend whose family warmly and kindly “adopted” me when I was studying in Paris 31 years ago. I’ve even “reestablished” a relationship with a second cousin whom I’ve probably never met (neither of us is absolutely sure) – but he knew my mother and grandparents, so I think it counts. These relationships have added a new dimension to my present life, and I’m very grateful to have found them.
You will say, of course, that there’s nothing unusual about any of this. Most people my age often wonder “Whatever became of…?”, and with Google it’s now often possible to find out. I’m sure I'm not the first or last fifty-ish person to spend time searching the Net for clues as to what her old acquaintances are doing now. But I’ve gone beyond getting back in touch with distant family and close friends with whom I’d lost contact. Obsessed is probably too strong a word, but I’ve put more emotional resources than is probably healthy in trying to resurrect old relationships. In fact, I'm even trying to establish new relationships with people with whom I wasn’t ever close, but wished I were when I knew them.
And though I’ve discovered that most people are decidedly not interested in reopening past relationships, I persist even in my more hopeless attempts. I’ve even ruined things for myself on occasion by writing about my life in more detail than the average person wants to hear, too early in the correspondence. In one case, I wrote five times after the person on the other end stopped answering my letters - and I still find myself thinking of her today, a year later, and wondering whether to call her when I get to the States this summer.
I’ve asked myself many times why I feel such a strong need to do this. After all, I’m hardly lonely in my present life. I have a strong marriage, wonderful children, a close and vibrant religious community, and supportive and loving friends. I’m even in touch with the friends with whom I was closest in childhood, high school and college. The most sensible thing would be to gratefully concentrate wholly on the people who surround me here and now, and accept that both I and the people I knew way back when have moved on. Why can’t I just leave the past to memory?
I think the answer is a complex mix of many different possibilities, and I don’t doubt that all are true at the same time. One possible explanation – shared, I’m sure, by many immigrants and emigrants – is that there’s almost no one in Israel who knew me as I was before coming to live here. This makes me feel as if I’m split into two separate parts, and that I will not be whole until those parts become integrated. So by creating these new-old relationships, by bringing my past into my present and my present into my past, I may well be attempting to gather different aspects of myself into one consistent self.
Another possibility is that, having lost my capacity for pure optimism, I’m trying to return to a more innocent time, when I was able to look ahead to a clear and promising future. True, by the time I was a teenager I’d experienced some unusually harsh and traumatic events and situations. But at that time I felt that surely these things were behind me, because I myself had the power to determine my own bright future. Perhaps today I’m attempting to revive that optimistic young self, by treating the vast world of possibilities that were available to me then as open even now, so many years later.
But I believe there’s a third explanation - one that’s harder for me to admit to, because it’s so irrational. I think that I’ve been trying to change the past – in some magical way, to do it all over again. The logic goes like this: If when I was younger I didn’t manage to form friendships with the girls I most admired, perhaps now I’ll know how to succeed. And if I do, I will have “corrected” my life; it will be as if those parts had never happened, and some of the pain and sadness that I carry with me from those years will disappear. And then – so my magical thinking tells me – maybe I’ll then become the person I could have been, and have the life I might have had, had I never gone through that pain.
Why has this attempt at sorcery only started in the past few years? After all, decades went by without my even thinking of trying to “revive” relationships I never really had. I believe the answer goes far beyond the new possibilities opened by the Internet. I think that my need to “fix” my life, to build an alternate narrative for myself, only became urgent once Timmi was diagnosed with the illness that tortured, threatened and ultimately took her life. I could have gone on living with that childhood sadness that I’m trying to erase by seeking new friendships with old acquaintances – the normal and common pain of a girl who was lonelier than she wanted to be. But now I carry inside a kind of pain that can't just be lived with - the unnatural agony of a mother who lost her child to cancer. This agony threatens at times to overwhelm me, if I don't do something to make it disappear. But there's nothing I can do or say to myself rationally that can make it disappear. And so that part of me that still insists on believing in magic tries to do that something, following its own twisted logic by trying to fulfill today the dreams and fantasies of my former life. If I can only succeed in that, then perhaps I'll also be able to wake up from the nightmare of the past ten years to find my family whole, and Timmi peacefully asleep in her bed.
We human beings are amazingly complex and contradictory creatures. We need our past - without roots, we would virtually float off into space. And there's no question but that we need to have a vision for our future to hold on to in difficult times. But ultimately, life must be lived in the here and now. Yes, this really is my life; fantasizing about the life I wish I’d had won’t change that fact, nor will dreaming of the life I hope I’ll have in days to come. Only if I squarely face my present existence will I have any chance of shaping its reality.
And so I pray that God will help me integrate my past, present and future in a healthy and constructive way. I pray for the ability to look back at my past life with the wisdom I’ve gained by living it, and to anchor my friendships and relationships – even my new-old ones – in that wisdom. I pray for the courage once again to look forward to the future with hope, even in the knowledge that there can be no certainty that my hopes will be realized in this life. Most of all, I pray for the ability to live fully in the here and now, and to be fully present for those I love and who love me.
Tuesday, April 26, 2005
Saturday, April 16, 2005
A Good Week
March 31, 2000
This has been a truly good week from Timmi's point of view. She no longer suffers from the stomach problems that the GVH had caused her, and is back to eating enthusiastically. She also seems able to drink enough now. Also, she has lowered yet again the dose of the painkilling patches that she wears, a sign that she may still have enough GVH left for it to be fighting the cancer. (Also her skin is dry and sensitive, which is not so comfortable but a sign perhaps that the GVH is still active.)
But the best part is her mood - she has been feeling very good, especially since her doctors told her that she could start going out again to public places such as movies and restaurants. So far she's been out three times this week, and is planning another trip to the mall today. She is also making all kinds of plans – finishing matriculation exams, appearing in the last production of her Theater class's play in April, etc. She is also very interested in going abroad again (impatient is the word, actually). She really feels like she wants and is able to resume a more normal life. Yesterday evening she even did, on her own initiative, some housework while we were out - a real sign of her good mood and the strength she's feeling.
She also expressed the desire to go away as a family during Chol Ha-Moed,* and when I pointed out that she would not be able to do a lot of vacation-type things, answered that she would rather travel in a limited way than not travel at all, and that she wants the rest of the family to have as good a time as possible, so not to worry if she can't participate in every activity. Of course, we will try to do things that she can do with us. By the way, she wants us to go to the Zichron - Caesaria area; does anyone have any suggestions as to a hotel where we could get reservations for Chol Ha-Moed at this relatively late date? I've started looking, and it's a problem.
We just hope, of course, that this trend will continue and that there will be no more surprises of the kind we've all been hit with so many times in the past.
Shabbat Shalom to all.
Love,
Sara
*Chol Ha-Moed – the five intermediate days between the holidays of the first and last days of Pesach (Passover).
April 14, 2005
This week was lovely; Don and I just got back from a two-night vacation that we took in and around Beit She’an, a 5,000-year-old city in Israel’s north. Like many other cities in Israel, Beit She’an has been home to Canaanites, Jews (King David conquered it somewhere around 1,000 B.C.E.), Romans, Byzantines, Arabs and now, again, Jews.
Besides the fascinating Roman-Byzantine ruins – which have been beautifully reconstructed to give a real feel for the ancient city – there are several natural and historical attractions in the area. Taking our bird and flower guides, we visited a few sites on the Gilboa, where King Saul and his sons were defeated and slain by the Philistines (the Book of Samuel relates that their bodies were then displayed on the Beit She’an city walls). We were a bit late for this area’s most impressive flowers, which generally bloom in March. But we were more successful with the birds; amateurs as we are, we still found and identified several types that we hadn’t seen (or, more likely, noticed) before. We also visited the Sahne, a very large natural spring and pool surrounded by a grassy and shaded area for picnics, games and just plain lazing around. We’ve been to the Sahne several times, though up to now always with the children. There’s always a lovely, relaxed ambiance there, with Jewish and Arab families from the area picnicking and swimming side by side.
Traveling around Israel is something of a national obsession, and has been since the founding of the state. Natural sites are full to bursting on holidays, which is why Don and I always try to use some of our vacation days for trips during the work week. We thought we’d miss the Passover rush this time, but almost everywhere we went there were buses full of boisterous children on their annual class trips. Even so, we managed to find a few places where we could be the only two people on the trail - for me, a foretaste of heaven.
I grew up in New York City, with almost no experience of nature. Although we lived in Coney Island, on the beach (literally; we didn’t have to cross any streets to get there), there was very little green in the landscape of my childhood. And we couldn’t afford to go away for family vacations. The first time I ever saw expanses of grass, rolling hills, and fields of wildflowers was at the age of 16, when I spent the summer at the Cornell University program for high school juniors. I was blown away. I'd always longed to spend quiet time in nature; in sixth grade, I wrote a poem in which I fantasized waking every morning at dawn and walking outside into a world of sparkling grass and an invitingly blue lake. A far cry from the housing project I lived in. So when I found myself that summer actually eating blackberries straight off a tree - well, you can imagine how I felt.
And so when I got to Israel, I very enthusiastically assimilated into the culture of nature travel. As soon we got our first car, Don and I began taking the children for family trips around Israel. This tiny country contains amazingly diverse natural scenery, from the lush Galilee to the Negev desert to the coral reefs of Eilat. And, of course, a long and rich history - the Dead Sea caves, Crusader fortresses, Roman ruins, ancient synagogues… the list is virtually endless. But going on vacation has meant far more than the opportunity to see the country’s magnificent landscapes and learn about its turbulent past. It’s given our family – and, sometimes, Don and me alone – the chance to be with each other away from the pressures of day-to-day life. The trips have sometimes been incredibly exhausting; with so many children so close in age, how could they be otherwise? But what’s remained for all of us is the warm feeling of having been together through something special – even the children’s fights in the back seat have become just one more family memory to laugh about.
I know all this probably sounds obvious and banal to many people. But the fact is that I will never take any of it for granted – living so near to beautiful natural surroundings, adding my own roots to a living historical continuum, and (most of all) having a close and loving family with whom to share it all.
Some of my strongest memories of Timmi are connected to away-from-home vacations. Timmi, racing her sisters to the snack bar when we would stop for ice cream in the Jordan valley after driving through the Judean Desert with five kids packed into a hatchback Renault – without air conditioning. (This was in the Israel of the 80s, when just about no one could afford air conditioning. We got all five kids into the car by belting baby seats in the car’s hatchback space for Timmi, who was a toddler then, and for Elaine. We hooked up a fan that blew straight onto their faces, making them more comfortable than anyone else in the car.) Timmi taking off her clothes and jumping joyfully into the Sahne or some other natural pool. Timmi counting how many species of flowers we could find in just one small field (in Israel, the number can reach fifty). Timmi setting up her tent and taking Elaine by the hand to explore our favorite campground in the northern Galilee.
Then, that August camping trip when Timmi cried from pain for almost the full three days. She had already seen doctors and undergone many inconclusive medical tests, but we were still three months away from diagnosis of her cancer. Timmi's illness and the treatments she underwent prevented us from going away for a long time after that August trip. But when we were finally able to travel again, her enthusiasm redoubled. In an echo of my own deep appreciation for nature and for travel after missing out on these experiences when I was a child, Timmi – who had grown up taking nature trips with family, school, and Scouts – stopped taking them for granted. And Don and I came to appreciate all the more keenly every precious minute with our children, and with each other.
The Pesach trip of five years ago was our last with Timmi. Today, when I travel with Don or our children, I never fail to think how she would have loved the trip's scenery, its animals and birds, its flowers and all its experiences. I’m also reminded that we will never again take a full family trip; there will always be at least one child missing. But my sadness at those thoughts is tempered by the comfort of finding a memory of Timmi in every place we visit. Here’s where she did… There’s where she said… Here’s where we all… That’s just like the place where she…
As the years have passed since Timmi left us, the comfort of finding Timmi's spirit in the most unexpected places has increasingly enabled me to bear the sadness of her physical absence. And my intense appreciation of every chance I receive to get away with Don or any of my children further lightens the burden. And so now, five years after that last trip with Timmi, I can say upon coming home from just about any vacation, “This has been a truly good week.”
This has been a truly good week from Timmi's point of view. She no longer suffers from the stomach problems that the GVH had caused her, and is back to eating enthusiastically. She also seems able to drink enough now. Also, she has lowered yet again the dose of the painkilling patches that she wears, a sign that she may still have enough GVH left for it to be fighting the cancer. (Also her skin is dry and sensitive, which is not so comfortable but a sign perhaps that the GVH is still active.)
But the best part is her mood - she has been feeling very good, especially since her doctors told her that she could start going out again to public places such as movies and restaurants. So far she's been out three times this week, and is planning another trip to the mall today. She is also making all kinds of plans – finishing matriculation exams, appearing in the last production of her Theater class's play in April, etc. She is also very interested in going abroad again (impatient is the word, actually). She really feels like she wants and is able to resume a more normal life. Yesterday evening she even did, on her own initiative, some housework while we were out - a real sign of her good mood and the strength she's feeling.
She also expressed the desire to go away as a family during Chol Ha-Moed,* and when I pointed out that she would not be able to do a lot of vacation-type things, answered that she would rather travel in a limited way than not travel at all, and that she wants the rest of the family to have as good a time as possible, so not to worry if she can't participate in every activity. Of course, we will try to do things that she can do with us. By the way, she wants us to go to the Zichron - Caesaria area; does anyone have any suggestions as to a hotel where we could get reservations for Chol Ha-Moed at this relatively late date? I've started looking, and it's a problem.
We just hope, of course, that this trend will continue and that there will be no more surprises of the kind we've all been hit with so many times in the past.
Shabbat Shalom to all.
Love,
Sara
*Chol Ha-Moed – the five intermediate days between the holidays of the first and last days of Pesach (Passover).
April 14, 2005
This week was lovely; Don and I just got back from a two-night vacation that we took in and around Beit She’an, a 5,000-year-old city in Israel’s north. Like many other cities in Israel, Beit She’an has been home to Canaanites, Jews (King David conquered it somewhere around 1,000 B.C.E.), Romans, Byzantines, Arabs and now, again, Jews.
Besides the fascinating Roman-Byzantine ruins – which have been beautifully reconstructed to give a real feel for the ancient city – there are several natural and historical attractions in the area. Taking our bird and flower guides, we visited a few sites on the Gilboa, where King Saul and his sons were defeated and slain by the Philistines (the Book of Samuel relates that their bodies were then displayed on the Beit She’an city walls). We were a bit late for this area’s most impressive flowers, which generally bloom in March. But we were more successful with the birds; amateurs as we are, we still found and identified several types that we hadn’t seen (or, more likely, noticed) before. We also visited the Sahne, a very large natural spring and pool surrounded by a grassy and shaded area for picnics, games and just plain lazing around. We’ve been to the Sahne several times, though up to now always with the children. There’s always a lovely, relaxed ambiance there, with Jewish and Arab families from the area picnicking and swimming side by side.
Traveling around Israel is something of a national obsession, and has been since the founding of the state. Natural sites are full to bursting on holidays, which is why Don and I always try to use some of our vacation days for trips during the work week. We thought we’d miss the Passover rush this time, but almost everywhere we went there were buses full of boisterous children on their annual class trips. Even so, we managed to find a few places where we could be the only two people on the trail - for me, a foretaste of heaven.
I grew up in New York City, with almost no experience of nature. Although we lived in Coney Island, on the beach (literally; we didn’t have to cross any streets to get there), there was very little green in the landscape of my childhood. And we couldn’t afford to go away for family vacations. The first time I ever saw expanses of grass, rolling hills, and fields of wildflowers was at the age of 16, when I spent the summer at the Cornell University program for high school juniors. I was blown away. I'd always longed to spend quiet time in nature; in sixth grade, I wrote a poem in which I fantasized waking every morning at dawn and walking outside into a world of sparkling grass and an invitingly blue lake. A far cry from the housing project I lived in. So when I found myself that summer actually eating blackberries straight off a tree - well, you can imagine how I felt.
And so when I got to Israel, I very enthusiastically assimilated into the culture of nature travel. As soon we got our first car, Don and I began taking the children for family trips around Israel. This tiny country contains amazingly diverse natural scenery, from the lush Galilee to the Negev desert to the coral reefs of Eilat. And, of course, a long and rich history - the Dead Sea caves, Crusader fortresses, Roman ruins, ancient synagogues… the list is virtually endless. But going on vacation has meant far more than the opportunity to see the country’s magnificent landscapes and learn about its turbulent past. It’s given our family – and, sometimes, Don and me alone – the chance to be with each other away from the pressures of day-to-day life. The trips have sometimes been incredibly exhausting; with so many children so close in age, how could they be otherwise? But what’s remained for all of us is the warm feeling of having been together through something special – even the children’s fights in the back seat have become just one more family memory to laugh about.
I know all this probably sounds obvious and banal to many people. But the fact is that I will never take any of it for granted – living so near to beautiful natural surroundings, adding my own roots to a living historical continuum, and (most of all) having a close and loving family with whom to share it all.
Some of my strongest memories of Timmi are connected to away-from-home vacations. Timmi, racing her sisters to the snack bar when we would stop for ice cream in the Jordan valley after driving through the Judean Desert with five kids packed into a hatchback Renault – without air conditioning. (This was in the Israel of the 80s, when just about no one could afford air conditioning. We got all five kids into the car by belting baby seats in the car’s hatchback space for Timmi, who was a toddler then, and for Elaine. We hooked up a fan that blew straight onto their faces, making them more comfortable than anyone else in the car.) Timmi taking off her clothes and jumping joyfully into the Sahne or some other natural pool. Timmi counting how many species of flowers we could find in just one small field (in Israel, the number can reach fifty). Timmi setting up her tent and taking Elaine by the hand to explore our favorite campground in the northern Galilee.
Then, that August camping trip when Timmi cried from pain for almost the full three days. She had already seen doctors and undergone many inconclusive medical tests, but we were still three months away from diagnosis of her cancer. Timmi's illness and the treatments she underwent prevented us from going away for a long time after that August trip. But when we were finally able to travel again, her enthusiasm redoubled. In an echo of my own deep appreciation for nature and for travel after missing out on these experiences when I was a child, Timmi – who had grown up taking nature trips with family, school, and Scouts – stopped taking them for granted. And Don and I came to appreciate all the more keenly every precious minute with our children, and with each other.
The Pesach trip of five years ago was our last with Timmi. Today, when I travel with Don or our children, I never fail to think how she would have loved the trip's scenery, its animals and birds, its flowers and all its experiences. I’m also reminded that we will never again take a full family trip; there will always be at least one child missing. But my sadness at those thoughts is tempered by the comfort of finding a memory of Timmi in every place we visit. Here’s where she did… There’s where she said… Here’s where we all… That’s just like the place where she…
As the years have passed since Timmi left us, the comfort of finding Timmi's spirit in the most unexpected places has increasingly enabled me to bear the sadness of her physical absence. And my intense appreciation of every chance I receive to get away with Don or any of my children further lightens the burden. And so now, five years after that last trip with Timmi, I can say upon coming home from just about any vacation, “This has been a truly good week.”
Saturday, April 09, 2005
Losing My Innocence
March 24, 2000
Now I'll give a fuller version of the latest news. As I wrote last time, Timmi is now (as of Monday) out of the hospital, the GVH having somewhat stabilized. Last Shabbat she was also at home for "leave", and it was really great - Timmi was in a really good mood, and not only was there no friction between her and her siblings, but they all got along fantastically and truly enjoyed each other's company. It should always be this way, as I'm sure many a parent has said even in normal circumstances.
The good mood has kept up, despite physical ups and downs since Monday. It seems this GVH stuff isn't so easy. But we knew that GVH is unpredictable, changeable and not so easy to control, so the main thing is that we are now in the place we wanted to be. As I mentioned in my last update, Timmi is experiencing less pain and so it may well be that the GVH is fighting the cancer as we had hoped and continue to hope it will. She has even reduced the dosage of her narcotic patches, which is always a good sign.
The problem is still that it is difficult for Timmi to drink; on the one hand, she wants to drink because her mouth is always dry, but on the other hand drinking quite often makes her feel nauseated. So far, it seems she's drinking enough not to dehydrate, but she has to be very careful in order not to repeat the kidney failure she had last time she dehydrated, because of the cyclosporin that she must take to regulate the GVH.
Yesterday, though, I was out with her (in the Malcha Mall, not my favorite place but a place outside the house) for an hour and a half, and it didn't exhaust her. Another good sign!
She is now going to try and complete at least one matriculation exam, so that she'll have less to make up next year. Altogether, she is now into planning the next steps, when after a few months she will have a fully functioning immune system, and hopefully the GVH will be stable enough for her to resume a fairly normal life.
Shabbat Shalom.
Love,
Sara
April 8, 2005
I’ve been reading and rereading this last update for the past several days, trying to get a handle on what to write for this post. There are so many possibilities. On a happy note, I could focus on my gratitude that Timmi’s relationships with her brothers and sisters were ultimately strong enough to weather the tensions that resulted from her illness. I could write about Timmi’s drive to live her life as fully as she could, despite her heavy and constant physical and emotional difficulties. But as I read the update today, the happy experiences that I recorded there are filtered through my knowledge and memory of the events that came afterward. I know how this story ended, and in many ways that knowledge has profoundly changed how I look at the world.
When I opened my computer at work Thursday morning, I found a Power Point presentation a client had sent me. Against a background of beautiful color photographs of peaceful natural scenes, it tells the story of Omri, a three-year-old Israeli boy. Some time ago, Omri began to experience unexplained pain in his feet, which persisted and then spread to other parts of his body. He soon began to lose his sight as well. As soon as I read this description of Omri's symptoms, I had no doubt as to where the story was leading. Omri is suffering from a rare and aggressive form of lymphoma that has metastasized to his brain, spinal cord and bone marrow.
It was very hard to keep reading Omri’s story, but I found myself unable to close the file until the presentation ended. I learned that although Omri had enjoyed a brief remission, his cancer relapsed and metastasized while he was still in active chemotherapy. His family is now trying to organize a bone-marrow drive to find a donor for a transplant (no potential donor on the international database matches his), and is seeking both potential donors willing to be tested, and contributions to finance the tests.
Since Thursday, I’ve been haunted by a persistent sadness - for Omri and his parents, but also for the way I myself now read his narrative. Once, I would have followed Omri’s story with the intense hope that a way could and would be found to save his life. I would have thought, modern medicine is so amazing – if only a matching donor can be found, Omri still has a chance! But from where I am now, that is no longer possible. The quixotic optimism that drives Omri’s parents to seek to raise a million dollars in order to try one last, very far-fetched possibility reminds me too much of my own carefully cultivated hopefulness in the face of the ever-increasing probability that we were going to lose Timmi. I just can't summon up that kind of trusting hopefulness any longer. When I lost my daughter, I also lost a great deal of my innocence.
All those good signs that we held onto! Timmi’s periods of energy, her fighting spirit, her fierce will to live – all these were supposed to increase her chance of beating the cancer. And all those promising therapies to try! New experimental treatments that had shown good preliminary results. Natural foods and supplements that would strengthen her immune system and help it fight the cancer. Like naïve children hearing a bedtime story, we never completely stopped believing in the possibility of a happy ending, however improbable we knew such an ending to be as time went on without those therapies delivering on their promises, without those wonderful signs turning into concrete reality.
I wish I were not completely certain that, short of a true miracle, Omri - like many, many other completely innocent children - will soon be joining Timmi in the next world.
I wish I were still able to believe in fairy-tale endings.
Now I'll give a fuller version of the latest news. As I wrote last time, Timmi is now (as of Monday) out of the hospital, the GVH having somewhat stabilized. Last Shabbat she was also at home for "leave", and it was really great - Timmi was in a really good mood, and not only was there no friction between her and her siblings, but they all got along fantastically and truly enjoyed each other's company. It should always be this way, as I'm sure many a parent has said even in normal circumstances.
The good mood has kept up, despite physical ups and downs since Monday. It seems this GVH stuff isn't so easy. But we knew that GVH is unpredictable, changeable and not so easy to control, so the main thing is that we are now in the place we wanted to be. As I mentioned in my last update, Timmi is experiencing less pain and so it may well be that the GVH is fighting the cancer as we had hoped and continue to hope it will. She has even reduced the dosage of her narcotic patches, which is always a good sign.
The problem is still that it is difficult for Timmi to drink; on the one hand, she wants to drink because her mouth is always dry, but on the other hand drinking quite often makes her feel nauseated. So far, it seems she's drinking enough not to dehydrate, but she has to be very careful in order not to repeat the kidney failure she had last time she dehydrated, because of the cyclosporin that she must take to regulate the GVH.
Yesterday, though, I was out with her (in the Malcha Mall, not my favorite place but a place outside the house) for an hour and a half, and it didn't exhaust her. Another good sign!
She is now going to try and complete at least one matriculation exam, so that she'll have less to make up next year. Altogether, she is now into planning the next steps, when after a few months she will have a fully functioning immune system, and hopefully the GVH will be stable enough for her to resume a fairly normal life.
Shabbat Shalom.
Love,
Sara
April 8, 2005
I’ve been reading and rereading this last update for the past several days, trying to get a handle on what to write for this post. There are so many possibilities. On a happy note, I could focus on my gratitude that Timmi’s relationships with her brothers and sisters were ultimately strong enough to weather the tensions that resulted from her illness. I could write about Timmi’s drive to live her life as fully as she could, despite her heavy and constant physical and emotional difficulties. But as I read the update today, the happy experiences that I recorded there are filtered through my knowledge and memory of the events that came afterward. I know how this story ended, and in many ways that knowledge has profoundly changed how I look at the world.
When I opened my computer at work Thursday morning, I found a Power Point presentation a client had sent me. Against a background of beautiful color photographs of peaceful natural scenes, it tells the story of Omri, a three-year-old Israeli boy. Some time ago, Omri began to experience unexplained pain in his feet, which persisted and then spread to other parts of his body. He soon began to lose his sight as well. As soon as I read this description of Omri's symptoms, I had no doubt as to where the story was leading. Omri is suffering from a rare and aggressive form of lymphoma that has metastasized to his brain, spinal cord and bone marrow.
It was very hard to keep reading Omri’s story, but I found myself unable to close the file until the presentation ended. I learned that although Omri had enjoyed a brief remission, his cancer relapsed and metastasized while he was still in active chemotherapy. His family is now trying to organize a bone-marrow drive to find a donor for a transplant (no potential donor on the international database matches his), and is seeking both potential donors willing to be tested, and contributions to finance the tests.
Since Thursday, I’ve been haunted by a persistent sadness - for Omri and his parents, but also for the way I myself now read his narrative. Once, I would have followed Omri’s story with the intense hope that a way could and would be found to save his life. I would have thought, modern medicine is so amazing – if only a matching donor can be found, Omri still has a chance! But from where I am now, that is no longer possible. The quixotic optimism that drives Omri’s parents to seek to raise a million dollars in order to try one last, very far-fetched possibility reminds me too much of my own carefully cultivated hopefulness in the face of the ever-increasing probability that we were going to lose Timmi. I just can't summon up that kind of trusting hopefulness any longer. When I lost my daughter, I also lost a great deal of my innocence.
All those good signs that we held onto! Timmi’s periods of energy, her fighting spirit, her fierce will to live – all these were supposed to increase her chance of beating the cancer. And all those promising therapies to try! New experimental treatments that had shown good preliminary results. Natural foods and supplements that would strengthen her immune system and help it fight the cancer. Like naïve children hearing a bedtime story, we never completely stopped believing in the possibility of a happy ending, however improbable we knew such an ending to be as time went on without those therapies delivering on their promises, without those wonderful signs turning into concrete reality.
I wish I were not completely certain that, short of a true miracle, Omri - like many, many other completely innocent children - will soon be joining Timmi in the next world.
I wish I were still able to believe in fairy-tale endings.
Friday, April 01, 2005
Balance
March 16, 2000
Timmi is still hospitalized, as she is still unable to eat and keep down any significant amount of food, or drink enough to keep from dehydrating. Having lost about three kilos since entering the hospital (12 days ago), this evening she started getting TPN – intravenous nourishment.
The good news, though, is that it seems that the cause of her stomach inflammation is GVH; although the rash that had originally indicated the GVH has disappeared, it turns out that the GVH itself has not only not disappeared but is actually a bit too strong. (Just to remind you, the reason this is good news is that we want some GVH, which is an immunological response that we hope will fight her cancer.) She has therefore started receiving intravenous steroids as well as the anti-GVH drug cyclosporin. She will continue to receive the steroids until her clinical condition plus blood tests show that the GVH is under control; hopefully when this happens she will be able to eat and drink again.
Her mood has been quite good, as a general rule, since returning to the hospital. Unfortunately, the steroids will probably make her quite irritable and will almost certainly make it even more difficult for her than it already is to sleep. So for many reasons, we hope the medications will quickly be effective so that she will be able to stop taking the steroids as soon as possible.
Staying with Timmi all day most days in the hospital has been quite tiring for me (not to mention stressful, especially when we had no clue as to what was causing her symptoms), but her improved mood – together with my newfound serenity concerning my lack of ability to do much, other than be there, for her - has made this past week a time for feeling close despite our circumstances. I don't know how long it will last, but a period like this will give me something to hold on to the next time things get harder.
March 21, 2000
A quick update but I'm sure you'll all be glad to hear that Timmi was released yesterday from the hospital, and is now able to eat and (with some difficulty but sufficiently) drink. Also, the GVH seems to be having some effect and the cancer pains that Timmi was having have been reduced; we are trying now to see whether we can lower the dose of her painkiller patches.
Purim Sameah!*
*Happy Purim (see my last two posts).
March 29, 2005
Maimonides, the great 12th-century rabbi, physician, and philosopher, held that the most important factor for a healthy body, as well as for a healthy soul, is moderation in all things, which in turn leads to a balanced life. I believe that this precept remains true to this day. I’ve been at my best when my life has reflected a reasonable balance among all my obligations, pleasures and emotions. The trick, of course, is finding this balance – and keeping it. This was one of the most difficult challenges for our family when Timmi was ill, and an almost impossible one in the aftermath of her death. Today, many of the elements in my life – the complex, many-faceted life of a modern, educated mother – are fairly well balanced, but there are still many times when everything feels out of synch, and I lose my eqilibrium. What I hope is that the journey I will begin this summer toward an eventual career in social work will help me finally find, to the extent such a thing is possible, the balance that my life has been missing since Timmi died.
In many ways, Timmi’s struggle against her cancer was a balancing act. Physically, we wanted her various treatments to be effective, but not to kill or maim her with their side-effects. This dilemma reached its peak, of course, during and after her two bone marrow transplants. A transplant can certainly save a life, but it can also be deadly for several reasons. If the new bone marrow fails to “take,” the patient’s original marrow, which was destroyed before the transplant, will fail to regenerate and no new blood cells will be created. If the transplant "takes," but the new bone marrow does not completely match the old, the new blood may reject the patient’s body, in a process known as Graft Versus Host Disease (the GVH to which I kept referring in my updates). If the match is too incomplete, and the GVH is too strong, it may be fatal. But if the new bone marrow too completely matches the old, and no GVH results, the treatment will be ineffective against the cancer. And so Timmi's treatment was an ongoing attempt to attain just the right level of GVH, so that it would attack the cancer cells but not her other organs. This meant a constant adjustment of the dose of the various medications that she took to prevent the reaction from becoming too strong. Also, there were many times when she was taking a whole “chain” of medications – med A against the cancer, med B against the side effects of med A, med C against the side-effects of med B, and so on. Don once calculated that at one point there were six medications in this chain!
This constant struggle for balance was refected in the emotional sphere as well. We had to work all the time to keep Timmi as optimistic at possible - but while still impressing on her the gravity of her condition, so that she would cooperate with her treatment even when it was hard for her. (During her first illness, when she was twelve, for example, she had to take very unpleasant medications, and to have needles inserted into her veins unreasaonably often. Naturally enough, she sometimes objected strenuously.)
Socially, Timmi struggled with the opposition between her normal adolescent desire to fit in with her healthy peers, and the fact that her experiences had left their indelible mark, making her undeniably different from other girls her age. There were many times, she told me, when she was sitting with a group of girls talking about the usual teenage concerns, and would start wondering, “What on Earth are they talking about? Why do they care?” So she tried to balance her behavior, joining in the conversation just enough to feel that she had relationships with other girls her age, even if their communication didn’t touch on the issues that truly concerned her.
In parallel, each member of our family struggled with her/his own conflicting needs, desires and obligations. Don and I needed to care for Timmi and at the same time respond to the other children’s needs, continue to put food on the table, and somehow manage to tend to our own needs at least to the extent needed to avoid collapsing. And each of our children had to find an equilibrium in their relationships with Timmi, and with us. Their love and empathy for Timmi caused them to try to do what they could for her, and to understand why we expected more of them (in the older girls’ case) or had less time for them (in the case of the younger children). But their empathy and understanding were complicted by their natural feelings of resentment and anger. On the one hand, how can a child (or even a teenager) feel pure empathy for a person who is taking up so much time and attention, and such a large part of the family's other resources? But on the other, how can she be angry with a person - and a beloved sister, at that - who is suffering so much, and who may be taken at any time? There was no simple solution to these dilemmas.
As I’ve mentioned many times in this blog, after Timmi’s death my entire world went out of kilter, and for a very long time I felt as if my life was completely unbalanced – unhinged, as Robert Avrech so aptly expressed it in his blog Seraphic Secret. Not only did I lose Timmi herself, but I lost a whole world of experience, as the activities on which I’d been spending a great deal of my time suddenly became irrelevant; I literally didn’t know what to do with myself. The only way I was able to rebuild a sense of balance in my life was to focus on one thing at a time. If one of the children needed me, I would devote myself wholly to responding to that child, and tried to avoid becoming overwhelmed with thoughts of how devastating Timmi's illness and death had been for all of my children. If a friend suggested that we meet, I would concentrate on trying to tell her about myself - mostly about how my life had changed - and to hear about her life, and not on my feeling that an impenetrable wall had arisen between me and anyone who had not lost a child. If an opportunity to do some work (for example, a short translation or editing job) came up, I would focus on that one activity, without thinking about whether I would ever be able to return to a regular work schedule.
In this way, I’ve slowly and painfully regained a certain equilibrium, and am now able to handle several hours a day of work, more or less carry out my domestic responsibilities, spend time with my children and Don, and even find some time for myself – to read, or meet with friends. But there is still at least one time every day when it doesn’t feel right to be doing anything. I can’t concentrate on work or on reading, and don’t feel up to talking with anyone. At those times, I feel a certain panic, as if I’m lost in a wilderness somewhere without basic survival tools.
Although I’m very excited about my summer plans, I'm also quite anxious at the prospect of spending more than two months away from my family, in a city (New York) in which I haven’t lived since I was 17, surrounded by people with whom I don’t have a longstanding relationship. My lifestyle will be almost completely different than it is now - I'll be a full-time students as opposed to a working mother. I’m afraid all that sudden change will throw me off, so that I won’t be able to do even what I need to in order to finish this summer, let alone manage the two-plus years of the program.
But I hold on to the reason I’m going to New York. I'm going in order to learn to do what I can with my own experience going through Timmi's illness and death together with my family, to help other families get through that experience whole. I think there's a good chance that this sense of purpose will pull me together and give me the direction and the energy I’ll need to get the most I can out of my studies. And in the long run, I hope that my new career will fill my need to reconstruct, even if imperfectly, the world I lost when Timmi died.
With Timmi gone, my life will never be truly balanced again. But I hope and pray that the journey I’m starting this coming summer will ultimately bring me - and, perhaps, at least some of my family - to a new equilibrium, from which I’ll be able to help other families find their own balance.
Timmi is still hospitalized, as she is still unable to eat and keep down any significant amount of food, or drink enough to keep from dehydrating. Having lost about three kilos since entering the hospital (12 days ago), this evening she started getting TPN – intravenous nourishment.
The good news, though, is that it seems that the cause of her stomach inflammation is GVH; although the rash that had originally indicated the GVH has disappeared, it turns out that the GVH itself has not only not disappeared but is actually a bit too strong. (Just to remind you, the reason this is good news is that we want some GVH, which is an immunological response that we hope will fight her cancer.) She has therefore started receiving intravenous steroids as well as the anti-GVH drug cyclosporin. She will continue to receive the steroids until her clinical condition plus blood tests show that the GVH is under control; hopefully when this happens she will be able to eat and drink again.
Her mood has been quite good, as a general rule, since returning to the hospital. Unfortunately, the steroids will probably make her quite irritable and will almost certainly make it even more difficult for her than it already is to sleep. So for many reasons, we hope the medications will quickly be effective so that she will be able to stop taking the steroids as soon as possible.
Staying with Timmi all day most days in the hospital has been quite tiring for me (not to mention stressful, especially when we had no clue as to what was causing her symptoms), but her improved mood – together with my newfound serenity concerning my lack of ability to do much, other than be there, for her - has made this past week a time for feeling close despite our circumstances. I don't know how long it will last, but a period like this will give me something to hold on to the next time things get harder.
March 21, 2000
A quick update but I'm sure you'll all be glad to hear that Timmi was released yesterday from the hospital, and is now able to eat and (with some difficulty but sufficiently) drink. Also, the GVH seems to be having some effect and the cancer pains that Timmi was having have been reduced; we are trying now to see whether we can lower the dose of her painkiller patches.
Purim Sameah!*
*Happy Purim (see my last two posts).
March 29, 2005
Maimonides, the great 12th-century rabbi, physician, and philosopher, held that the most important factor for a healthy body, as well as for a healthy soul, is moderation in all things, which in turn leads to a balanced life. I believe that this precept remains true to this day. I’ve been at my best when my life has reflected a reasonable balance among all my obligations, pleasures and emotions. The trick, of course, is finding this balance – and keeping it. This was one of the most difficult challenges for our family when Timmi was ill, and an almost impossible one in the aftermath of her death. Today, many of the elements in my life – the complex, many-faceted life of a modern, educated mother – are fairly well balanced, but there are still many times when everything feels out of synch, and I lose my eqilibrium. What I hope is that the journey I will begin this summer toward an eventual career in social work will help me finally find, to the extent such a thing is possible, the balance that my life has been missing since Timmi died.
In many ways, Timmi’s struggle against her cancer was a balancing act. Physically, we wanted her various treatments to be effective, but not to kill or maim her with their side-effects. This dilemma reached its peak, of course, during and after her two bone marrow transplants. A transplant can certainly save a life, but it can also be deadly for several reasons. If the new bone marrow fails to “take,” the patient’s original marrow, which was destroyed before the transplant, will fail to regenerate and no new blood cells will be created. If the transplant "takes," but the new bone marrow does not completely match the old, the new blood may reject the patient’s body, in a process known as Graft Versus Host Disease (the GVH to which I kept referring in my updates). If the match is too incomplete, and the GVH is too strong, it may be fatal. But if the new bone marrow too completely matches the old, and no GVH results, the treatment will be ineffective against the cancer. And so Timmi's treatment was an ongoing attempt to attain just the right level of GVH, so that it would attack the cancer cells but not her other organs. This meant a constant adjustment of the dose of the various medications that she took to prevent the reaction from becoming too strong. Also, there were many times when she was taking a whole “chain” of medications – med A against the cancer, med B against the side effects of med A, med C against the side-effects of med B, and so on. Don once calculated that at one point there were six medications in this chain!
This constant struggle for balance was refected in the emotional sphere as well. We had to work all the time to keep Timmi as optimistic at possible - but while still impressing on her the gravity of her condition, so that she would cooperate with her treatment even when it was hard for her. (During her first illness, when she was twelve, for example, she had to take very unpleasant medications, and to have needles inserted into her veins unreasaonably often. Naturally enough, she sometimes objected strenuously.)
Socially, Timmi struggled with the opposition between her normal adolescent desire to fit in with her healthy peers, and the fact that her experiences had left their indelible mark, making her undeniably different from other girls her age. There were many times, she told me, when she was sitting with a group of girls talking about the usual teenage concerns, and would start wondering, “What on Earth are they talking about? Why do they care?” So she tried to balance her behavior, joining in the conversation just enough to feel that she had relationships with other girls her age, even if their communication didn’t touch on the issues that truly concerned her.
In parallel, each member of our family struggled with her/his own conflicting needs, desires and obligations. Don and I needed to care for Timmi and at the same time respond to the other children’s needs, continue to put food on the table, and somehow manage to tend to our own needs at least to the extent needed to avoid collapsing. And each of our children had to find an equilibrium in their relationships with Timmi, and with us. Their love and empathy for Timmi caused them to try to do what they could for her, and to understand why we expected more of them (in the older girls’ case) or had less time for them (in the case of the younger children). But their empathy and understanding were complicted by their natural feelings of resentment and anger. On the one hand, how can a child (or even a teenager) feel pure empathy for a person who is taking up so much time and attention, and such a large part of the family's other resources? But on the other, how can she be angry with a person - and a beloved sister, at that - who is suffering so much, and who may be taken at any time? There was no simple solution to these dilemmas.
As I’ve mentioned many times in this blog, after Timmi’s death my entire world went out of kilter, and for a very long time I felt as if my life was completely unbalanced – unhinged, as Robert Avrech so aptly expressed it in his blog Seraphic Secret. Not only did I lose Timmi herself, but I lost a whole world of experience, as the activities on which I’d been spending a great deal of my time suddenly became irrelevant; I literally didn’t know what to do with myself. The only way I was able to rebuild a sense of balance in my life was to focus on one thing at a time. If one of the children needed me, I would devote myself wholly to responding to that child, and tried to avoid becoming overwhelmed with thoughts of how devastating Timmi's illness and death had been for all of my children. If a friend suggested that we meet, I would concentrate on trying to tell her about myself - mostly about how my life had changed - and to hear about her life, and not on my feeling that an impenetrable wall had arisen between me and anyone who had not lost a child. If an opportunity to do some work (for example, a short translation or editing job) came up, I would focus on that one activity, without thinking about whether I would ever be able to return to a regular work schedule.
In this way, I’ve slowly and painfully regained a certain equilibrium, and am now able to handle several hours a day of work, more or less carry out my domestic responsibilities, spend time with my children and Don, and even find some time for myself – to read, or meet with friends. But there is still at least one time every day when it doesn’t feel right to be doing anything. I can’t concentrate on work or on reading, and don’t feel up to talking with anyone. At those times, I feel a certain panic, as if I’m lost in a wilderness somewhere without basic survival tools.
Although I’m very excited about my summer plans, I'm also quite anxious at the prospect of spending more than two months away from my family, in a city (New York) in which I haven’t lived since I was 17, surrounded by people with whom I don’t have a longstanding relationship. My lifestyle will be almost completely different than it is now - I'll be a full-time students as opposed to a working mother. I’m afraid all that sudden change will throw me off, so that I won’t be able to do even what I need to in order to finish this summer, let alone manage the two-plus years of the program.
But I hold on to the reason I’m going to New York. I'm going in order to learn to do what I can with my own experience going through Timmi's illness and death together with my family, to help other families get through that experience whole. I think there's a good chance that this sense of purpose will pull me together and give me the direction and the energy I’ll need to get the most I can out of my studies. And in the long run, I hope that my new career will fill my need to reconstruct, even if imperfectly, the world I lost when Timmi died.
With Timmi gone, my life will never be truly balanced again. But I hope and pray that the journey I’m starting this coming summer will ultimately bring me - and, perhaps, at least some of my family - to a new equilibrium, from which I’ll be able to help other families find their own balance.
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