February 13, 2000
Unfortunately this update won't be quite as positive as the last. At the end of last week Timmi started experiencing quite strong pain in one of her elbows, which is the site of one of the largest of her tumors, as well as pain in other places where there were tumors in the past. Because she still has no detectable GVH, this is not surprising - we knew that the preparation for the transplant, in and of itself, would not keep the tumors from growing back. The pain is now more under control (though not totally eliminated), through an increased the dose of painkillers. Her mood could be better, to say the least, although there are ups as well as downs.
There is still a chance that the GVH will show up, as she discontinued her cyclosporin at the beginning of this week. If there is no GVH within the next week or two, she will start receiving interferon, a drug meant to "activate" T-cells and thus induce the hoped-for GVH and concomitant anti-leukemia effect. So for the moment we are mostly waiting.
As for me, I've been kind of wasted recently, functioning not quite as well as I have in the past. Hopefully this is temporary; I usually bounce back from these periods.
Shabbat Shalom and love to all.
Sara
February 26, 2005
As I’ve written before, one of the many very difficult things for me (and, I know, for other parents) about having and, especially, losing a child with cancer has been the seemingly unbridgeable gulf that this earthquake opened between me (and parents like me) and the rest of humanity. As I’ve written in earlier posts (see “Community,” October 2004, and “Support,” November 2004), that feeling of isolation can be overwhelming. It felt as though no one I knew would ever truly be able to understand what I was going through, other than my close family and other bereaved parents. That was why I joined my first support group, which turned out to be a disaster, and why I dared to join the group I’m now part of despite my traumatic experience last time.
I entered my present group with some trepidation, and after the first meeting I doubted whether the group would be able to do much for me. After all, I'd joined in order to meet other bereaved parents, and the group is composed of people who have lost any loved one to cancer. What would I really have in common with someone who lost a parent, for example? If there was one thing that used to drive me crazy while Timmi was ill and after she died, it was someone coming up to me and telling me that she “knew what I was going through,” because (for example) her mother was suffering from cancer. As hard as that experience is (and I know how hard it is, as my own mother died of lung cancer in 1996), it’s still in the natural order of things. Parents are supposed to die before their children do, and human beings have built-in, natural mechanisms for coping with a parent’s death. Losing a child, however, turns the entire universe upside down, and disorients those of us who go through it more completely than anything we’ve ever known.
Then there’s the feeling of having failed in our role as parents. Unless a parent-child relationship is unhealthy, most children – especially adult children – don’t believe their role in life is to keep their mother and father safe from harm. A parent’s suffering is hard to bear, as is our helplessness to alleviate it, and it’s always very sad to lose someone we cared for deeply. But the grief parents feel at witnessing the suffering and death of a child – this intensely beloved being that all our instincts scream at us to protect – is truly indescribable. (Although I must say that Robert Avrech has come very close to capturing that grief in his blog “Seraphic Secret” (see the Links section) and in the article he wrote for the Jewish Press, “My Heart Unhinged”).
As time went by, though, I found myself becoming more and more emotionally engaged with the members of my group. From the beginning, of course, I could identify with the two mothers who'd also lost children. But as I got to know the others better, and heard more about what they were going through, I couldn’t help but empathize with them. David’s words about his mother, who died when he was very young, brought back the loss of my own father when I was fourteen. When Ari and Jacob spoke of mourning their wives, I went cold inside to think how it would be to lose Don, and to live alone after so many years of love and companionship. Hearing all the group’s members speak of their deepest sorrow brought me closer to them, even to those who hadn’t experienced the illness and death of a child. Still, for many weeks I felt that I hadn’t gotten, and would never get, what I’d hoped for when I joined the group – relationships with with other bereaved parents, the only people who could truly understand me.
Then something happened at the meeting to which each of us brought a picture or an object (or both) connected to the loved ones we’d lost (I described this meeting in my previous post, “Making Things”). As the members of the group spoke of those they'd lost, and what these pictures and objects meant to them, I began to feel a very strong intimacy with the entire group. I felt I knew not only the members of the group, but something of their departed loved ones as well. And, almost miraculously, I felt that they'd begun to know me, and also to know something of Timmi. For the first time in what felt like forever, I began to feel a bond with a group of other people based on understanding each other’s deepest experiences. Neither I nor anyone else wanted the session to end when it did. At the next session, which was to be our last, we unanimously asked to go on meeting, and although it took some arranging, we will continue to meet in the foreseeable future.
I experienced a kind of illumination that evening. I saw, for the first time, how much I have in common after all with the others in the group, including those who aren’t bereaved parents. These people know, as I do, how it is to feel so wasted that they practically can’t function, but to go on doing what needs to be done because there’s no one else to do it. They know about cycles of hope and despair, and what it’s like to hold on even to the tiniest hope all the way to the end – and what it feels like finally to lose that hope. Their lives, like mine have been profoundly affected by their loss, and in many ways they also see lives in terms of “before” and “after.” With all the differences among us, all of us are in mourning.
Realizing all this was a watershed for me. I still see losing a child as the most traumatic experience possible, and can't pretend that I feel completely understood by anyone who isn't another bereaved parent. But although the divide between me and the rest of the world is still there, I now longer feel that it’s completely unbridgeable. If I can see my mourning in the context of any human being’s natural sadness at losing a loved one, if I can hear other mourners’ pain and be heard by them, then we do share in a basic human experience. However unnatural it is to lose a child as opposed to a wife, a parent or a sister, I can give support to – and receive support from! – people who aren't in exactly the same position that I am. It may sound like an exaggeration, but I am completely sincere when I say that, at least in this small way, I feel as if I’ve rejoined the human race.
Saturday, February 26, 2005
Saturday, February 19, 2005
Making Things
February 3, 2000
This week was relatively "normal" for Timmi. She has been drinking enough, so her kidneys are back to functioning normally. Her blood counts and other bloodwork are also normal. She has been feeling relatively well, with some pains and weakness but nothing extreme. Her mood could be better, but in her situation some irritability is not in the least surprising.
We still have not seen any real signs of GVH which fact, though comfortable for the short term, is not so comforting for the long term, as we need some GVH to combat the cancer. She has been steadily reducing her dose of Cyclosporin (the anti-GVH medicine) and may go off it altogether next week. At least then her kidneys won't be in any further danger.
She spends a lot of time watching her video, and also reads and writes in her diary. This week she drew again with Judith Margolis, which she also enjoys. I hope that pretty soon she will be able to start attending some school, in a limited way.
There isn't really anything more to write, so Shabbat Shalom to all.
Love,
Sara
February 18, 2005
At this time in the yearly cycle of the Torah reading, we're reading the chapters of the Book of Exodus that set out detailed instructions for making the all of the material objects necessary for the priestly service. Last Shabbat, we read how to make the Holy Ark, in which God dwelt after giving the Torah to the Children of Israel on Mount Sinai, its altar, the tent that housed it, and its implements and coverings, as well as the Menorah, the seven-branched lamp that burned before God at all times. Tomorrow, we will read about the garments and breastplate of the High Priest, as well as the garments of the ordinary priests. The Torah goes into loving detail when describing these objects, which were to be made of the finest materials and at the highest level of craftsmanship.
One of the things to be learned, I believe, from the meticulous attention that the Torah lavishes on these descriptions is that making things can be a way of serving God. God made us in His image, and because God is first and foremost a Creator, we are also creative beings. By producing physical objects with the proper intention and with care, we may fulfill the commandment to strive to imitate God – “Be holy, for I the Lord your God am holy” (Leviticus 19:2).
At a recent meeting of my bereavement group, all of us brought pictures of our departed loved ones, or objects that reminded us of them. “David” brought a pendant that his mother, who died when he was eleven, used to wear when she put him to sleep. When she leaned over to kiss him, the pendent would fall over and brush his face. “Ari” brought a tape of a Spanish folk song called “The Song of the Birds”, that he and his wife of 42 years used to listen to, holding each other, every day for years. He hasn’t been able to listen to the song even once since his wife died. Others brought things their loved ones had used, or played with, or cared about, and many brought pictures.
I was the only person who brought something my loved one – Timmi – had made. (I also brought a picture of her smiling triumphantly, holding a pigeon that she'd spent half an hour rescuing from our neighbor’s balcony, where it had gotten stuck in some wire meshing. The picture captured Timmi's lovingkindness, and her intense desire to prevent suffering in the world.) It was one of many mementos she made for the girls in her group when she was a counselor in the Religious Scouts youth movement. I found it in a file she kept that contains, in chronological order, records of all her sessions with the girls. For each session, she carefully wrote down that day’s activities, the values or lessons the activities were meant to emphasize, how many girls came and whether the meeting was successful. Almost all of these descriptions were accompanied by a sample of the small presents (mementos) related to that meeting’s theme, which she'd made for the girls.
The memento I brought to show my group is a key ring, attached to a piece of foam rubber cut into an exact replica of the shape – the boot – of Italy, for an “Around the World” evening that Timmi planned and lead. She and the girls put on Indian makeup, cooked French food, saw a Spanish movie, and did all kinds of other things connected to various countries in the world. And for each of the fifteen or so girls in her group, she made a key ring with a different “country” attached. I can’t even calculate the amount of time she must have spent preparing this evening and making the girls’ gifts.
I brought the key ring to the group because Timmi loved making things. Her self-portrait hangs over the piano in our living room. Directly underneath, on top of the piano, sit two ostrich eggs that we bought on a family trip to the Golan Heights (yes, there is an ostrich farm in the Golan Heights). On one egg is a picture Timmi drew of a huge ostrich bending its neck down to a tiny egg she's just laid; on the other egg, a baby ostrich sits proudly next to the huge egg she's just produced, which is bigger than the bird. Many of Timmi’s friends have kept the presents that she spent hours making for their birthdays – a typical gift was a miniature scroll containing a story or a poem she had written, carefully folded into a matchbox.
Timmi’s name is derived from Ezekiel’s vision of the future Temple. “Timorim” are carvings in the shape of date-palm trees (“Tamar” means “date” in Hebrew), which Ezekiel envisioned as adorning the Temple’s walls and door. Like the Holy Ark and the other sacred objects described in this and last week’s Torah portions, these carvings are the product of exquisite physical craftsmanship harnessed to the ultimate spiritual end – to serve God.
We didn’t know it when we named her, but we truly got it right when we gave Timmi a name associated with a beautiful material object created to serve the highest spiritual Being. Timmi's name recalls not only her amazing creativity, and the meticulous care she invested in the things she made, but also the ends toward which she directed her creativity. True to her name, Timmi made physical objects in order to express her spiritual and emotional self – especially her love and concern for others – just as she did by writing stories and poems. And I’m extraordinarily grateful for this, because although she has left this world in body, the wealth of her creations keep her bright, loving spirit close to those of us who have remained behind.
This week was relatively "normal" for Timmi. She has been drinking enough, so her kidneys are back to functioning normally. Her blood counts and other bloodwork are also normal. She has been feeling relatively well, with some pains and weakness but nothing extreme. Her mood could be better, but in her situation some irritability is not in the least surprising.
We still have not seen any real signs of GVH which fact, though comfortable for the short term, is not so comforting for the long term, as we need some GVH to combat the cancer. She has been steadily reducing her dose of Cyclosporin (the anti-GVH medicine) and may go off it altogether next week. At least then her kidneys won't be in any further danger.
She spends a lot of time watching her video, and also reads and writes in her diary. This week she drew again with Judith Margolis, which she also enjoys. I hope that pretty soon she will be able to start attending some school, in a limited way.
There isn't really anything more to write, so Shabbat Shalom to all.
Love,
Sara
February 18, 2005
At this time in the yearly cycle of the Torah reading, we're reading the chapters of the Book of Exodus that set out detailed instructions for making the all of the material objects necessary for the priestly service. Last Shabbat, we read how to make the Holy Ark, in which God dwelt after giving the Torah to the Children of Israel on Mount Sinai, its altar, the tent that housed it, and its implements and coverings, as well as the Menorah, the seven-branched lamp that burned before God at all times. Tomorrow, we will read about the garments and breastplate of the High Priest, as well as the garments of the ordinary priests. The Torah goes into loving detail when describing these objects, which were to be made of the finest materials and at the highest level of craftsmanship.
One of the things to be learned, I believe, from the meticulous attention that the Torah lavishes on these descriptions is that making things can be a way of serving God. God made us in His image, and because God is first and foremost a Creator, we are also creative beings. By producing physical objects with the proper intention and with care, we may fulfill the commandment to strive to imitate God – “Be holy, for I the Lord your God am holy” (Leviticus 19:2).
At a recent meeting of my bereavement group, all of us brought pictures of our departed loved ones, or objects that reminded us of them. “David” brought a pendant that his mother, who died when he was eleven, used to wear when she put him to sleep. When she leaned over to kiss him, the pendent would fall over and brush his face. “Ari” brought a tape of a Spanish folk song called “The Song of the Birds”, that he and his wife of 42 years used to listen to, holding each other, every day for years. He hasn’t been able to listen to the song even once since his wife died. Others brought things their loved ones had used, or played with, or cared about, and many brought pictures.
I was the only person who brought something my loved one – Timmi – had made. (I also brought a picture of her smiling triumphantly, holding a pigeon that she'd spent half an hour rescuing from our neighbor’s balcony, where it had gotten stuck in some wire meshing. The picture captured Timmi's lovingkindness, and her intense desire to prevent suffering in the world.) It was one of many mementos she made for the girls in her group when she was a counselor in the Religious Scouts youth movement. I found it in a file she kept that contains, in chronological order, records of all her sessions with the girls. For each session, she carefully wrote down that day’s activities, the values or lessons the activities were meant to emphasize, how many girls came and whether the meeting was successful. Almost all of these descriptions were accompanied by a sample of the small presents (mementos) related to that meeting’s theme, which she'd made for the girls.
The memento I brought to show my group is a key ring, attached to a piece of foam rubber cut into an exact replica of the shape – the boot – of Italy, for an “Around the World” evening that Timmi planned and lead. She and the girls put on Indian makeup, cooked French food, saw a Spanish movie, and did all kinds of other things connected to various countries in the world. And for each of the fifteen or so girls in her group, she made a key ring with a different “country” attached. I can’t even calculate the amount of time she must have spent preparing this evening and making the girls’ gifts.
I brought the key ring to the group because Timmi loved making things. Her self-portrait hangs over the piano in our living room. Directly underneath, on top of the piano, sit two ostrich eggs that we bought on a family trip to the Golan Heights (yes, there is an ostrich farm in the Golan Heights). On one egg is a picture Timmi drew of a huge ostrich bending its neck down to a tiny egg she's just laid; on the other egg, a baby ostrich sits proudly next to the huge egg she's just produced, which is bigger than the bird. Many of Timmi’s friends have kept the presents that she spent hours making for their birthdays – a typical gift was a miniature scroll containing a story or a poem she had written, carefully folded into a matchbox.
Timmi’s name is derived from Ezekiel’s vision of the future Temple. “Timorim” are carvings in the shape of date-palm trees (“Tamar” means “date” in Hebrew), which Ezekiel envisioned as adorning the Temple’s walls and door. Like the Holy Ark and the other sacred objects described in this and last week’s Torah portions, these carvings are the product of exquisite physical craftsmanship harnessed to the ultimate spiritual end – to serve God.
We didn’t know it when we named her, but we truly got it right when we gave Timmi a name associated with a beautiful material object created to serve the highest spiritual Being. Timmi's name recalls not only her amazing creativity, and the meticulous care she invested in the things she made, but also the ends toward which she directed her creativity. True to her name, Timmi made physical objects in order to express her spiritual and emotional self – especially her love and concern for others – just as she did by writing stories and poems. And I’m extraordinarily grateful for this, because although she has left this world in body, the wealth of her creations keep her bright, loving spirit close to those of us who have remained behind.
Friday, February 11, 2005
Playing in the Snow
January 30, 2000
Timmi was released from the hospital Tuesday afternoon, after receiving five and a half days of hydration intravenously. Her kidney functions are now normal, after a fairly serious kidney failure caused by the dehydration and the very high level of the anti-rejection drug Cyclosporin in her blood. She is no longer sleepy or hallucinating, so we know that these symptoms were caused by the dehydration and not by the painkillers she is receiving, as we had originally feared. She still has some pain but it no longer wakes her up at night.
We are now waiting for clear signs of GVH; she has a couple of symptoms that might be it but we're not yet sure. It should be happening around now, though, so we are hoping (a) that it will come and (b) that it will not be too uncomfortable when it does.
Generally Timmi has been feeling fairly well the last few days, and even came outside with us for over an hour this morning to play in the snow. Her mood is also generally good, though she is somewhat impatient, which is of course totally understandable.
This last hospital stay was not as hard as hospital stays can be, as Timmi had a private room in the Pediatrics Department, but it was very tiring for me and I am feeling pretty much drained. Thank God for Shabbat!
Love,
Sara
February 8, 2005
It snowed in Jerusalem for a short time this afternoon. Wet snow that melted as soon as it hit the ground, but snow nonetheless. Jerusalem children love snow, which falls here every other year or so, and falls seriously (that is, “sticks”) only once every few years. Actually, although I grew up with snowy winters, I myself find it exciting when a real snowstorm hits – probably because I know that there’s almost no chance that it will last more than a day or so. It’s just a welcome break in the routine. I could use a break like that right now.
Five years ago, we had one of those big snowstorms that come to Jerusalem at most once every ten or fifteen years. Big, fat, dry flakes fell for hours and piled up in the garden and playground next to our apartment complex. We drove that evening to look at one of the most beautiful sights I know – the walls of Jerusalem’s Old City peacefully blanketed in soft, white powder. The next day, the sun came out but it stayed cold enough so the snow didn’t melt, and the streets filled with families playing, having snowball fights, and – almost a once-in-a-lifetime experience in Jerusalem! – building snowmen.
Like the other families, we went outside and built our snowman. Timmi absolutely insisted on joining us, even though she was still in some pain from the transplant. She took charge, dispatching her younger sisters and brother to roll the big snowballs, stacking them, adding snow to the sculpture and shaping it into the classic snowman, the one you see in films and comic strips. Scarf, carrot for the nose, the whole kit and caboodle. We have many pictures of her standing proudly next to the finished product, her face ruddy with cold and radiant with fun and happiness.
For that short time, Timmi was again the carefree, joyful girl that we had had the privilege of raising from babyhood; her shadows were banished, if only for that hour. I love looking at the photos from that day, and remembering those moments of joy. But at the same time, they remind me that there won’t be any more pictures of Timmi in the snow. Because, of course, that hour had to come to an end, and we had to take Timmi back inside. The snow melted soon after, leaving behind the sad and rather comic sight of sidewalks littered with dozens of carrots. Timmi returned to the struggle against her illness, her pain and her occasional despair. When the next winter came around, she had already left this world. She really did get to make that snowman only once in her lifetime.
Since translating Timmi’s poem in my last post (“Pain and Poetry”), I’ve been feeling sad much of the time. Recalling Timmi’s pain was, and remains, harder than I expected it to be when I wrote about it last week. When I’m not specifically busy with something else (work, cooking, trying to get the kids out of bed for school) I hear the words of her poem going through my head again and again. I could use some fine, powdery snow to go out and play with just now. I would love to be out there with my children, building and throwing snow and just being inside my body – together with these amazing beings that I once carried inside me – and giving my thoughts a rest.
February 11, 2005
I’m finishing this post on Friday. Real snow is now predicted, perhaps for tonight and more likely for tomorrow, Shabbat. So maybe my kids and I will get to play a little in the snow this year after all.
Since the time I started this post, I’ve undergone a condensed version – a kind of repetition in micro – of my larger mourning process. From being haunted by Timmi’s pain, and by her absence, I’ve returned to dwelling on the joy we had together, and her continuing presence in my life. If I go out and build a snowman tomorrow, it won’t be merely to distract myself from my pain at the memory of Timmi’s suffering, but to enjoy a happy time with my children. And my happiness will be tempered, but also enriched, by my memories of the good times we all had together when our family was whole.
Like that last snowfall, our time with Timmi ended too soon. But I feel deeply grateful that I had her to love, to play with and to cry with for eighteen amazing years. Each moment of those years came only once in my lifetime, and while I may not have fully appreciated them at the time, now I cherish them and will do my utmost to keep them from melting away.
Timmi was released from the hospital Tuesday afternoon, after receiving five and a half days of hydration intravenously. Her kidney functions are now normal, after a fairly serious kidney failure caused by the dehydration and the very high level of the anti-rejection drug Cyclosporin in her blood. She is no longer sleepy or hallucinating, so we know that these symptoms were caused by the dehydration and not by the painkillers she is receiving, as we had originally feared. She still has some pain but it no longer wakes her up at night.
We are now waiting for clear signs of GVH; she has a couple of symptoms that might be it but we're not yet sure. It should be happening around now, though, so we are hoping (a) that it will come and (b) that it will not be too uncomfortable when it does.
Generally Timmi has been feeling fairly well the last few days, and even came outside with us for over an hour this morning to play in the snow. Her mood is also generally good, though she is somewhat impatient, which is of course totally understandable.
This last hospital stay was not as hard as hospital stays can be, as Timmi had a private room in the Pediatrics Department, but it was very tiring for me and I am feeling pretty much drained. Thank God for Shabbat!
Love,
Sara
February 8, 2005
It snowed in Jerusalem for a short time this afternoon. Wet snow that melted as soon as it hit the ground, but snow nonetheless. Jerusalem children love snow, which falls here every other year or so, and falls seriously (that is, “sticks”) only once every few years. Actually, although I grew up with snowy winters, I myself find it exciting when a real snowstorm hits – probably because I know that there’s almost no chance that it will last more than a day or so. It’s just a welcome break in the routine. I could use a break like that right now.
Five years ago, we had one of those big snowstorms that come to Jerusalem at most once every ten or fifteen years. Big, fat, dry flakes fell for hours and piled up in the garden and playground next to our apartment complex. We drove that evening to look at one of the most beautiful sights I know – the walls of Jerusalem’s Old City peacefully blanketed in soft, white powder. The next day, the sun came out but it stayed cold enough so the snow didn’t melt, and the streets filled with families playing, having snowball fights, and – almost a once-in-a-lifetime experience in Jerusalem! – building snowmen.
Like the other families, we went outside and built our snowman. Timmi absolutely insisted on joining us, even though she was still in some pain from the transplant. She took charge, dispatching her younger sisters and brother to roll the big snowballs, stacking them, adding snow to the sculpture and shaping it into the classic snowman, the one you see in films and comic strips. Scarf, carrot for the nose, the whole kit and caboodle. We have many pictures of her standing proudly next to the finished product, her face ruddy with cold and radiant with fun and happiness.
For that short time, Timmi was again the carefree, joyful girl that we had had the privilege of raising from babyhood; her shadows were banished, if only for that hour. I love looking at the photos from that day, and remembering those moments of joy. But at the same time, they remind me that there won’t be any more pictures of Timmi in the snow. Because, of course, that hour had to come to an end, and we had to take Timmi back inside. The snow melted soon after, leaving behind the sad and rather comic sight of sidewalks littered with dozens of carrots. Timmi returned to the struggle against her illness, her pain and her occasional despair. When the next winter came around, she had already left this world. She really did get to make that snowman only once in her lifetime.
Since translating Timmi’s poem in my last post (“Pain and Poetry”), I’ve been feeling sad much of the time. Recalling Timmi’s pain was, and remains, harder than I expected it to be when I wrote about it last week. When I’m not specifically busy with something else (work, cooking, trying to get the kids out of bed for school) I hear the words of her poem going through my head again and again. I could use some fine, powdery snow to go out and play with just now. I would love to be out there with my children, building and throwing snow and just being inside my body – together with these amazing beings that I once carried inside me – and giving my thoughts a rest.
February 11, 2005
I’m finishing this post on Friday. Real snow is now predicted, perhaps for tonight and more likely for tomorrow, Shabbat. So maybe my kids and I will get to play a little in the snow this year after all.
Since the time I started this post, I’ve undergone a condensed version – a kind of repetition in micro – of my larger mourning process. From being haunted by Timmi’s pain, and by her absence, I’ve returned to dwelling on the joy we had together, and her continuing presence in my life. If I go out and build a snowman tomorrow, it won’t be merely to distract myself from my pain at the memory of Timmi’s suffering, but to enjoy a happy time with my children. And my happiness will be tempered, but also enriched, by my memories of the good times we all had together when our family was whole.
Like that last snowfall, our time with Timmi ended too soon. But I feel deeply grateful that I had her to love, to play with and to cry with for eighteen amazing years. Each moment of those years came only once in my lifetime, and while I may not have fully appreciated them at the time, now I cherish them and will do my utmost to keep them from melting away.
Monday, January 31, 2005
Pain and Poetry
January 20, 2000
This past week has been seriously difficult. Last Shabbat Timmi woke up in the middle of the night, in severe pain. We gave her painkillers that had worked in the past but were unable to control the pain through Motzei Shabbat, when we called Dr. Cherney, the pain specialist who helped us so much last summer and fall when Timmi was both in serious pain and very depressed. Since then we have been trying to eliminate the pain with progressively higher doses of narcotic painkillers, under Dr. Cherney's advice and supervision, of course. The pain is now almost under control, but since Sunday Timmi has been experiencing long periods of extreme drowsiness, hallucinations and confusion.
We were (and still are) very worried that the price of controlling the pain will be damage to Timmi's ability to function. There is a difference of opinion concerning the cause of the pain - Dr. Cherney believes that it is a side effect of a drug that Timmi received as part of the preparation for her transplant, in which case we may expect the pain to be relatively short-term. Professor Cividalli believes it to be a sign of GVH, in which case it could last quite a long time. Both doctors agree that the source of the pain is damage to the nerves of her feet and hands as a result of the transplant. Either way, we can't go on having Timmi unable to open her eyes for the better part of every day, so we feel as if we are between a rock and a hard place.
Today Timmi was hospitalized; it turned out that already as of Tuesday morning she was seriously dehydrated. The dehydration probably started last week, when she was nauseated and generally found it difficult to eat and drink. Her sleepiness then aggravated the problem, as (wonder of wonders) a sleeping person does not drink. Dehydration can be quite dangerous post-transplant, as the anti-rejection drug Cyclosporin that she is taking can damage the kidneys in the absence of sufficient hydration, and so she was supposed to be drinking more than usual. But it also turns out that dehydration can cause hallucinations and confusion! So it may turn out, once she has enough fluids in her, that it will be possible to find the combination and doses of painkillers that will enable us to control the pain without impairing her alertness. We certainly fervently hope so.
We hope that Timmi will be released from the hospital before Shabbat, but there is no guarantee. If she stays, Daniel will as usual stay with her in the hospital and I'll hold the fort here with the other kids.
Shabbat Shalom to all.
Love,
Sara
January 31, 2005
There is no life without pain. But there is pain, and there is pain. I truly do not have the words to express what it was like to see my daughter in prolonged agony. The waiting I wrote about in my last post turned into torture when what we were waiting for was relief from Timmi's intense suffering. All I can really say, right at this moment, is that when I signed up to be a mother, no one told me about that part of the job.
But Timmi did have words; she created poetry. After Timmi died, we found a neatly hand-written collection entitled “Mostly Poems.” We also found in her desk previous drafts of some of the poems, and so it was clear to us that in her last months she had decided on a final version, and then edited the collection, arranging the poems according to the date she’d written them. I think she did this, either deliberately or subconsciously, in order to leave them for us, much as she did the photo album that she arranged, and on the cover of which she wrote:
Timmi
1982-20__
(First Album)
It’s excruciating for me to read the poems that speak of the physical, emotional and spiritual pain that Timmi suffered. Nonetheless, I read them from time to time, as do Don and my other children. Just as pain became part of Timmi's life, the poems are part of who she was. There are times I can’t bear to look back at what she went through in her young life – six months of increasing pain before she was diagnosed; intense pain caused by chemotherapy and by bone marrow transplants; a return to intense pain with each relapse of the cancer; and throughout, bouts of depression and anxiety. It would be wonderful to forget Timmi’s suffering, and remember only the good times we had together. But I don’t want to forget any piece of Timmi. And so I read all of her poems and, together with my own sadness and pain in entering into the darker parts of her world, am amazed by her ability to put into words fears and experiences that are truly unspeakable.
I’ve loosely translated some of Timmi’s poems into English. I’ve tried to preserve the poems’ meter, but haven’t attempted to reproduce their rhyme schemes. (Another poem appears in “Yahrzeit,” December 2004.)
April 20, 1999
A black cloud of razor-sharp claws.
They scratch deeply into my flesh
If I ask who sent them, and why to me,
They continue to pierce in silence.
A black cloud of claws that wound.
They’ve pulled me toward pain’s abyss
I cannot scream out how evil they are –
After all, does a claw have a heart?
A black cloud of claws that rip.
A claw has reached my core
And there it tears off strips of my soul
And, giggling, discards them in slime.
A black cloud of murderous claws.
They’ve pulled me toward the great Pit.
But I’ve stood up to them and continue to stand -
I’ve yet to give in to despair.
This was the next update that I sent out to our community, two days after the one I've reproduced above:
January 22, 2000
Because my last update contained some very upsetting developments, I am writing this to let all of you know that things improved greatly over Shabbat. The most important news is that the hydration she has received until now has apparently cured the hallucination and confusion problem, so it seems that it wasn't caused by her pain medicines after all – just coincidentally she was increasing her dose of the medicines as she was getting progressively dehydrated. She is now either asleep or awake - no more strange in-between state. This is, of course, a great relief, although there was some comic relief in listening to her when she was hallucinating (at one point she asked me if I had eaten the four frogs I was supposed to eat). Also, her pain is now pretty much under control.
The less good news is that she will have to stay in the hospital for another couple of days at least. While the hydration has caused her biochemistry to improve, she still does not have normal function in her kidneys, which were seriously damaged (probably not permanently) by the dehydration and by the high level of Cyclosporin in her blood. Therefore, she will need to remain in the hospital for at least 24 hours after her biochemistry returns to normal.
Thank you all for your concern and hopefully by next Shabbat she will be out of the hospital and feeling much better.
This past week has been seriously difficult. Last Shabbat Timmi woke up in the middle of the night, in severe pain. We gave her painkillers that had worked in the past but were unable to control the pain through Motzei Shabbat, when we called Dr. Cherney, the pain specialist who helped us so much last summer and fall when Timmi was both in serious pain and very depressed. Since then we have been trying to eliminate the pain with progressively higher doses of narcotic painkillers, under Dr. Cherney's advice and supervision, of course. The pain is now almost under control, but since Sunday Timmi has been experiencing long periods of extreme drowsiness, hallucinations and confusion.
We were (and still are) very worried that the price of controlling the pain will be damage to Timmi's ability to function. There is a difference of opinion concerning the cause of the pain - Dr. Cherney believes that it is a side effect of a drug that Timmi received as part of the preparation for her transplant, in which case we may expect the pain to be relatively short-term. Professor Cividalli believes it to be a sign of GVH, in which case it could last quite a long time. Both doctors agree that the source of the pain is damage to the nerves of her feet and hands as a result of the transplant. Either way, we can't go on having Timmi unable to open her eyes for the better part of every day, so we feel as if we are between a rock and a hard place.
Today Timmi was hospitalized; it turned out that already as of Tuesday morning she was seriously dehydrated. The dehydration probably started last week, when she was nauseated and generally found it difficult to eat and drink. Her sleepiness then aggravated the problem, as (wonder of wonders) a sleeping person does not drink. Dehydration can be quite dangerous post-transplant, as the anti-rejection drug Cyclosporin that she is taking can damage the kidneys in the absence of sufficient hydration, and so she was supposed to be drinking more than usual. But it also turns out that dehydration can cause hallucinations and confusion! So it may turn out, once she has enough fluids in her, that it will be possible to find the combination and doses of painkillers that will enable us to control the pain without impairing her alertness. We certainly fervently hope so.
We hope that Timmi will be released from the hospital before Shabbat, but there is no guarantee. If she stays, Daniel will as usual stay with her in the hospital and I'll hold the fort here with the other kids.
Shabbat Shalom to all.
Love,
Sara
January 31, 2005
There is no life without pain. But there is pain, and there is pain. I truly do not have the words to express what it was like to see my daughter in prolonged agony. The waiting I wrote about in my last post turned into torture when what we were waiting for was relief from Timmi's intense suffering. All I can really say, right at this moment, is that when I signed up to be a mother, no one told me about that part of the job.
But Timmi did have words; she created poetry. After Timmi died, we found a neatly hand-written collection entitled “Mostly Poems.” We also found in her desk previous drafts of some of the poems, and so it was clear to us that in her last months she had decided on a final version, and then edited the collection, arranging the poems according to the date she’d written them. I think she did this, either deliberately or subconsciously, in order to leave them for us, much as she did the photo album that she arranged, and on the cover of which she wrote:
Timmi
1982-20__
(First Album)
It’s excruciating for me to read the poems that speak of the physical, emotional and spiritual pain that Timmi suffered. Nonetheless, I read them from time to time, as do Don and my other children. Just as pain became part of Timmi's life, the poems are part of who she was. There are times I can’t bear to look back at what she went through in her young life – six months of increasing pain before she was diagnosed; intense pain caused by chemotherapy and by bone marrow transplants; a return to intense pain with each relapse of the cancer; and throughout, bouts of depression and anxiety. It would be wonderful to forget Timmi’s suffering, and remember only the good times we had together. But I don’t want to forget any piece of Timmi. And so I read all of her poems and, together with my own sadness and pain in entering into the darker parts of her world, am amazed by her ability to put into words fears and experiences that are truly unspeakable.
I’ve loosely translated some of Timmi’s poems into English. I’ve tried to preserve the poems’ meter, but haven’t attempted to reproduce their rhyme schemes. (Another poem appears in “Yahrzeit,” December 2004.)
April 20, 1999
A black cloud of razor-sharp claws.
They scratch deeply into my flesh
If I ask who sent them, and why to me,
They continue to pierce in silence.
A black cloud of claws that wound.
They’ve pulled me toward pain’s abyss
I cannot scream out how evil they are –
After all, does a claw have a heart?
A black cloud of claws that rip.
A claw has reached my core
And there it tears off strips of my soul
And, giggling, discards them in slime.
A black cloud of murderous claws.
They’ve pulled me toward the great Pit.
But I’ve stood up to them and continue to stand -
I’ve yet to give in to despair.
This was the next update that I sent out to our community, two days after the one I've reproduced above:
January 22, 2000
Because my last update contained some very upsetting developments, I am writing this to let all of you know that things improved greatly over Shabbat. The most important news is that the hydration she has received until now has apparently cured the hallucination and confusion problem, so it seems that it wasn't caused by her pain medicines after all – just coincidentally she was increasing her dose of the medicines as she was getting progressively dehydrated. She is now either asleep or awake - no more strange in-between state. This is, of course, a great relief, although there was some comic relief in listening to her when she was hallucinating (at one point she asked me if I had eaten the four frogs I was supposed to eat). Also, her pain is now pretty much under control.
The less good news is that she will have to stay in the hospital for another couple of days at least. While the hydration has caused her biochemistry to improve, she still does not have normal function in her kidneys, which were seriously damaged (probably not permanently) by the dehydration and by the high level of Cyclosporin in her blood. Therefore, she will need to remain in the hospital for at least 24 hours after her biochemistry returns to normal.
Thank you all for your concern and hopefully by next Shabbat she will be out of the hospital and feeling much better.
No, there is no life without pain. What we can hope for is to be able to transform that unavoidable suffering into our own private poetry. And if, unlike Timmi, we lack the words to pour ourselves onto the written page, we can try to make our lives into poems of lovingkindness and empathy, by doing our best to ease even a small bit of the pain that afflicts so much of this world.
Sunday, January 30, 2005
Waiting
January 13, 2000
Timmi was released from the hospital on Monday, with mostly normal blood counts. Altogether she was hospitalized for the transplant for less than four weeks - less than half the time she was hospitalized the first time. So as far as the engraftment goes, the transplant was a total success. As I said, now we have to see about GVH and, most important, what effect all this will have on her cancer. For the first month she will not be able to go to enclosed public places (restaurants, movies, school etc.) but after that we hope she will start to be able to go places with a mask.
Paradoxically, coming home was somewhat difficult for Timmi. As long as she was undergoing treatment in the hospital or waiting there for her blood counts to rise sufficiently to enable her to leave, we were focused on short-term goals (sometimes as short term as getting through the next few hours). Now, however, we are in the position of waiting for something which will come, if at all, at some unspecified time, and which will take an unspecified form. She has no idea from one day to the next how she will feel, and however she feels has no way of knowing how long it will last. Also, she is worried about what she will do at home - again, in the hospital she has a certain routine that she developed over the years, but at home there is always the question of what will I do today. At home there is the expectation that life will somehow be "normal", but of course in these circumstances it is very far from a usual life for someone her age. What it seems we will do is schedule a few possible activities for each day, and if she doesn't feel up to a particular activity we will defer it to the next day.
So far since she's been home she has not felt well – different symptoms each day. Sometimes she's not up to doing anything, so she listens to music or, if she's feeling a bit stronger, watches a video. In the afternoon she has generally felt somewhat stronger, so for the last two days she has helped David with a project that he has to do for school. Her Reiki teacher was here yesterday, and next week I hope to take her to the teacher's home for treatments and, if she's up to it, she will learn the second level of Reiki. She may also start some projects in art and in music, again subject to how she's feeling. And she hopes to be able to catch up on at least one or two of her subjects at school, in order to finish twelfth grade with as many matriculation exams as possible (she may possibly be able to finish with Hebrew, Literature and Theater, with some small possibility of Bible).
Her mood, which was down when we first came home, has improved somewhat, and she is now enjoying the family life part of being home. She is discouraged by her physical state (for example, it is quite hard for her to eat, which takes a pretty big chunk of pleasure out of life) but is trying her best to deal with life as it is right now.
Shabbat Shalom to all.
Love,
Sara
January 29, 2005
A short time ago, I got some very good news - I’ve been accepted to the MSW program that I hope to attend in New York beginning this summer. That brought me one step closer to realizing my plan – hope, really – of becoming a social worker and working with families with a seriously ill child (see “Plans,” October 2004). But financial or family reasons could still prevent me from enrolling in the program. So now I’m waiting to see whether I’ll really be able to do it. It’s not easy to wait, because an important aspect of my future is at stake – the possibility of finally working at a profession that truly suits me, and through which (I believe) I can make a real contribution. In the meantime, I’m trying my best, as Timmi did, “to deal with life as it is right now.”
My professional life was always very important to me. I always knew that what I wanted to do was help make people’s lives a bit better; the only question was how I would go about it. When I discovered that I have a flair for legal reasoning, I decided to go into the field of public interest law – that is, to work for justice for the poor and oppressed. I was going to fight discrimination and exploitation, and make the world a better place. I saw this as a kind of Tikkun Olam (“repairing the world”), which is one of the Jewish religion’s greatest imperatives.
Sadly for me, when I moved to Israel I found that at that time there was no real possibility for me of a career in public interest law. Very few paying jobs existed; I now like to joke to a friend who served for about twenty years as the only permanently-employed litigator for the Association for Civil Rights in Israel that there was exactly one public interest law job in the country when I got here in 1980, and he'd taken it. An exaggeration, but the order of magnitude was about right. And as I needed to help support my family (we came with three children and were planning to have more), volunteering my time wasn’t an option.
So I settled for other jobs, first at a private firm and then in government. I found it hard to get excited about what I was doing in the private sector – a friend once described the typical case in corporate law as “one rich deadbeat suing another rich deadbeat.” But I consoled myself with the fact that the work was at least intellectually stimulating. When I worked for the government, I was involved in several projects that benefited consumers, so it felt a bit like the kind of law I’d hoped to practice. Though it wasn’t what I had dreamed of, it was for the general good and supported my family. I might have stayed on, were it not for the emotional earthquake of Timmi’s illness.
Timmi’s cancer and our family’s experiences made my priorities much clearer to me. I could no longer sit at a meeting, for example, without wondering, “What am I doing here?” After living with so much suffering, I realized that I could no longer relate to business or regulatory issues. What I needed - still need - is to work at a profession in which I may help other people cope with the kind of pain that our family had to go through.
I left law toward the end of Timmi’s first remission. I now work as a mediator, mostly for divorcing couples, and as a grant writer, helping non-profit organizations raise money for the good work they do. But these are temporary solutions, work that I do while I’m waiting to start my “real” professional life. True, my fundraising efforts have indirectly helped disadvantaged Israelis; but I’d much rather be working with them face to face. As a mediator, I help individual couples find a way minimize the trauma to their families during and after a divorce; but what I truly want to do is help families weather the hardest of times together, and build strong relationships with one another.
Thus, my fervent hopes for a career change. But my hope to become a social worker isn’t only about personal fulfillment. I truly believe that, having myself gone through six years of coping with Timmi's illness and its repercussions for our family, I’ll be able to help families in a similar position in ways that others perhaps cannot.
As always, though, life gives no guarantees, and there's a real possibility that things won't work out. Surely I, of all people, should know that. From the time Timmi’s symptoms first appeared, our family spent years waiting. We waited months for a diagnosis. We waited to see if treatment would put her into remission. Whenever she underwent a course of chemotherapy, we waited for the fevers that inevitably followed. We waited to see what side-effects her treatments would have, and how severe they would be. We waited to see if her transplants would produce the right level of Graft Versus Host Disease – too little and the cancer could come back, too much and the GVH could disable or kill her.
For years, we waited to see if Timmi's leukemia would return. We’d been told that after two years of clean tests, we could assume she’d been cured. We waited an extra year for good measure, and began to think that we might be able to start to relax. We even held a small ceremony at our synagogue to thank our community for all its support during Timmi’s illness. A few weeks later, Timmi’s relapse was diagnosed.
Because I know that the worst did happen and could well happen again, my waiting will probably always be tinged with anxiety. But I've learned to keep my fears from overwhelming me. Now, I concentrate on trying to make my life the best I can at any given moment. This focus is what made it possible for me to keep my emotional balance even in the face of the most frightening possibilities, and has enabled me to go on even after my long wait ended in tragedy.
So yes, what I’m waiting for right now is really very important to me. But I can face the chance that in the end my plans won't come to fruition, just as I managed to live for more than six years in the shadow of far worse possibilities. How? I try to focus on the present - on my relationships, obligations, problems and pleasures. And I remind myself that even if things don’t turn out the way I hope they will, life will continue to hold new possibilities: new friends, grandchildren, perhaps even work in a field that I haven’t yet considered. In the meantime, I’ll try my best to wait patiently.
Timmi was released from the hospital on Monday, with mostly normal blood counts. Altogether she was hospitalized for the transplant for less than four weeks - less than half the time she was hospitalized the first time. So as far as the engraftment goes, the transplant was a total success. As I said, now we have to see about GVH and, most important, what effect all this will have on her cancer. For the first month she will not be able to go to enclosed public places (restaurants, movies, school etc.) but after that we hope she will start to be able to go places with a mask.
Paradoxically, coming home was somewhat difficult for Timmi. As long as she was undergoing treatment in the hospital or waiting there for her blood counts to rise sufficiently to enable her to leave, we were focused on short-term goals (sometimes as short term as getting through the next few hours). Now, however, we are in the position of waiting for something which will come, if at all, at some unspecified time, and which will take an unspecified form. She has no idea from one day to the next how she will feel, and however she feels has no way of knowing how long it will last. Also, she is worried about what she will do at home - again, in the hospital she has a certain routine that she developed over the years, but at home there is always the question of what will I do today. At home there is the expectation that life will somehow be "normal", but of course in these circumstances it is very far from a usual life for someone her age. What it seems we will do is schedule a few possible activities for each day, and if she doesn't feel up to a particular activity we will defer it to the next day.
So far since she's been home she has not felt well – different symptoms each day. Sometimes she's not up to doing anything, so she listens to music or, if she's feeling a bit stronger, watches a video. In the afternoon she has generally felt somewhat stronger, so for the last two days she has helped David with a project that he has to do for school. Her Reiki teacher was here yesterday, and next week I hope to take her to the teacher's home for treatments and, if she's up to it, she will learn the second level of Reiki. She may also start some projects in art and in music, again subject to how she's feeling. And she hopes to be able to catch up on at least one or two of her subjects at school, in order to finish twelfth grade with as many matriculation exams as possible (she may possibly be able to finish with Hebrew, Literature and Theater, with some small possibility of Bible).
Her mood, which was down when we first came home, has improved somewhat, and she is now enjoying the family life part of being home. She is discouraged by her physical state (for example, it is quite hard for her to eat, which takes a pretty big chunk of pleasure out of life) but is trying her best to deal with life as it is right now.
Shabbat Shalom to all.
Love,
Sara
January 29, 2005
A short time ago, I got some very good news - I’ve been accepted to the MSW program that I hope to attend in New York beginning this summer. That brought me one step closer to realizing my plan – hope, really – of becoming a social worker and working with families with a seriously ill child (see “Plans,” October 2004). But financial or family reasons could still prevent me from enrolling in the program. So now I’m waiting to see whether I’ll really be able to do it. It’s not easy to wait, because an important aspect of my future is at stake – the possibility of finally working at a profession that truly suits me, and through which (I believe) I can make a real contribution. In the meantime, I’m trying my best, as Timmi did, “to deal with life as it is right now.”
My professional life was always very important to me. I always knew that what I wanted to do was help make people’s lives a bit better; the only question was how I would go about it. When I discovered that I have a flair for legal reasoning, I decided to go into the field of public interest law – that is, to work for justice for the poor and oppressed. I was going to fight discrimination and exploitation, and make the world a better place. I saw this as a kind of Tikkun Olam (“repairing the world”), which is one of the Jewish religion’s greatest imperatives.
Sadly for me, when I moved to Israel I found that at that time there was no real possibility for me of a career in public interest law. Very few paying jobs existed; I now like to joke to a friend who served for about twenty years as the only permanently-employed litigator for the Association for Civil Rights in Israel that there was exactly one public interest law job in the country when I got here in 1980, and he'd taken it. An exaggeration, but the order of magnitude was about right. And as I needed to help support my family (we came with three children and were planning to have more), volunteering my time wasn’t an option.
So I settled for other jobs, first at a private firm and then in government. I found it hard to get excited about what I was doing in the private sector – a friend once described the typical case in corporate law as “one rich deadbeat suing another rich deadbeat.” But I consoled myself with the fact that the work was at least intellectually stimulating. When I worked for the government, I was involved in several projects that benefited consumers, so it felt a bit like the kind of law I’d hoped to practice. Though it wasn’t what I had dreamed of, it was for the general good and supported my family. I might have stayed on, were it not for the emotional earthquake of Timmi’s illness.
Timmi’s cancer and our family’s experiences made my priorities much clearer to me. I could no longer sit at a meeting, for example, without wondering, “What am I doing here?” After living with so much suffering, I realized that I could no longer relate to business or regulatory issues. What I needed - still need - is to work at a profession in which I may help other people cope with the kind of pain that our family had to go through.
I left law toward the end of Timmi’s first remission. I now work as a mediator, mostly for divorcing couples, and as a grant writer, helping non-profit organizations raise money for the good work they do. But these are temporary solutions, work that I do while I’m waiting to start my “real” professional life. True, my fundraising efforts have indirectly helped disadvantaged Israelis; but I’d much rather be working with them face to face. As a mediator, I help individual couples find a way minimize the trauma to their families during and after a divorce; but what I truly want to do is help families weather the hardest of times together, and build strong relationships with one another.
Thus, my fervent hopes for a career change. But my hope to become a social worker isn’t only about personal fulfillment. I truly believe that, having myself gone through six years of coping with Timmi's illness and its repercussions for our family, I’ll be able to help families in a similar position in ways that others perhaps cannot.
As always, though, life gives no guarantees, and there's a real possibility that things won't work out. Surely I, of all people, should know that. From the time Timmi’s symptoms first appeared, our family spent years waiting. We waited months for a diagnosis. We waited to see if treatment would put her into remission. Whenever she underwent a course of chemotherapy, we waited for the fevers that inevitably followed. We waited to see what side-effects her treatments would have, and how severe they would be. We waited to see if her transplants would produce the right level of Graft Versus Host Disease – too little and the cancer could come back, too much and the GVH could disable or kill her.
For years, we waited to see if Timmi's leukemia would return. We’d been told that after two years of clean tests, we could assume she’d been cured. We waited an extra year for good measure, and began to think that we might be able to start to relax. We even held a small ceremony at our synagogue to thank our community for all its support during Timmi’s illness. A few weeks later, Timmi’s relapse was diagnosed.
Because I know that the worst did happen and could well happen again, my waiting will probably always be tinged with anxiety. But I've learned to keep my fears from overwhelming me. Now, I concentrate on trying to make my life the best I can at any given moment. This focus is what made it possible for me to keep my emotional balance even in the face of the most frightening possibilities, and has enabled me to go on even after my long wait ended in tragedy.
So yes, what I’m waiting for right now is really very important to me. But I can face the chance that in the end my plans won't come to fruition, just as I managed to live for more than six years in the shadow of far worse possibilities. How? I try to focus on the present - on my relationships, obligations, problems and pleasures. And I remind myself that even if things don’t turn out the way I hope they will, life will continue to hold new possibilities: new friends, grandchildren, perhaps even work in a field that I haven’t yet considered. In the meantime, I’ll try my best to wait patiently.
Monday, January 24, 2005
The Bare Necessities: Fun
January 8, 2000
Shavua Tov to everyone!
Last week was more difficult for Timmi than the week before, but the medical news, so far as the success of the transplant is concerned, is excellent - her white blood cell count went up so quickly that as of Friday she is no longer in isolation, although still hospitalized. In other words, it is quite clear that the transplant "took".
Physically, Timmi suffered much more than the week before, but still not nearly as much as during the first transplant. (She herself never loses sight of this and is quite grateful that things are not as bad as she had feared.) She had (still has, to some degree) mucositis, or damage by the chemical preparation for the transplant, in the mucous membranes of her throat and mouth, which was painful and made it very hard to swallow. In addition, she had various digestive tract problems, and often felt quite weak. All this was up and down, however - Thursday, for example, she felt really quite good and was very active, and then on Friday all her muscles started hurting and she felt dizzy, weak and nauseated. Then on Shabbat she felt better again. We need a lot of patience for this stuff.
Through all this, her mood has been remarkably good - serene is the word, I think. Whenever she felt relatively strong, she insisted on doing everything for herself, getting up and showering without assistance, for example. She also was as active as she could be – one day she helped Tehila E. (Sidra's wonderful daughter, who works at the hospital and has become good friends with Timmi) study for her psychometric exam, and another day gave Tehila a Reiki treatment! On Thursday we listened to jazz (especially Louis Armstrong - now, that would cheer anyone up!), and danced to it (Timmi danced sitting up in bed, with her upper body) and she read me two chapters from Khalil Gibran's The Prophet. She really seems to appreciate what there is to appreciate about life - one day she told Daniel how good it is to have people that love her. Altogether, she thinks and talks a great deal how love is really the most important thing in life. She certainly won't get an argument from me.
Now, we wait for the crucial news - whether and how much GVH there will be, and whether the treatment will be effective against the cancer. As I said, patience.
Love,
Sara
January 24, 2005
This evening, Don and I celebrated the Israeli holiday of Tu B’Shvat with several of our children. Originally set as the date by which we determine a tree’s age in order to know when its fruit is first permitted to us by Biblical law, this day has evolved in Israel into a celebration of the natural world. In accordance with the local custom, we ate fruits (both native to the Land of Israel and introduced here in modern times) and nuts, and sang songs about the land and its bounty.
Well, at first songs about the land itself, then songs containing any reference to any part of the land (including a couple of spirituals about the River Jordan). This reminded us of other songs we used to sing together when the children were young, and we enthusiastically sang those too. I then went a step further and put on a couple of records we used to play for the children when they were small, and we all joined in, singing and dancing along with the songs and listening raptly to the stories. Although the evening had started out with some strain between me and one of the older girls, the tension melted away as soon as we started singing together. Things got more raucous as the evening advanced, and we ended up having a truly wonderful time. Even better, for much of the evening it felt to me as if Timmi were also joining in.
It’s easy, with the myriad and sometimes conflicting obligations of modern living, to see fun as a luxury. Many of us do things just for the fun of it only when we’ve “earned” that right by taking care of all of our (supposedly) more serious and important business. But I’ve learned that fun is not a prize that we may allow ourselves to enjoy only if we’ve behaved well. Fun is definitely one of life’s necessities!
I think this is especially true of children who have disabilities or diseases that harm their quality of life. Fun takes them out of their bodies for a while, allows them a kind of breather from their troubles. Some people even hold that fun can give sick children more time. I don’t know if that’s true, but there’s no doubt that, at the very least, fun made Timmi’s too-short time in this world much happier.
Don and I spent a lot of time, energy and other resources arranging trips, outings, movies, concerts, plays – anything that Timmi might enjoy. Others helped as well, especially the dedicated people at Zichron Menachem, an organization founded by Chaim and Miri Ehrenthal in memory of their son Menachem who died of cancer after more than ten years of struggle. They run camps and a daytime center, persuade performers (well-known singers, magicians, you name it) to appear for the children, send volunteers into the hospitals to play with the children, throw parties in and outside of the hospital, and generally do everything in their power to show the kids a good time. Thanks to Miri and Chaim, Timmi rode horses and donkeys, drove mini-tractors, flew in a helicopter (several times!), water-skied in Eilat, and who knows what-all. With the other Zichron Menachem children, she visited the ancient city of Petra in Jordan. (That trip was jointly sponsored by Paul Newman and one of the princes of the Jordanian royal family; the prince also spent time with the children, pushing their wheelchairs and generally hanging with them.) Timmi would also have gone to Paris with Zichron Menachem, if she hadn’t had a terrible attack of pain just when they were due to leave, but I got to make that up to her (see “Paris”).
Through a different organization, Kav LeChaim (Lifeline), Timmi also attended Camp Simha (Happiness) in New York, where she had, by her own account, two of the best weeks of her life. A third organization, HaChaim (Life), took Timmi to London. She had quite a difficult time in London, as at the time she was taking very high doses of steroids, which badly affected both her body and her mood. But even so she brought home a few wonderful memories, most especially of the production of “The Lion King” that the children got to see on the London stage. I have several pictures of Timmi, her face and body completely bloated from the steroids, beaming as she stands arm in arm with each member of the cast. I feel at the same time like crying at the image of her distorted body, and laughing with her as she enjoys the musical and the backstage visit.
For quite a while after Timmi died, fun became off limits to our family. Our grief was just too strong. Timmi’s younger siblings often refused to join their friends in group activities. Like many surviving brothers and sisters, they felt that they weren’t entitled to have fun when their sister had so unfairly suffered and died. I also think that for all of us, for different periods of time, having fun felt like a betrayal. It took us a long time to understand that Timmi wouldn't have wanted us to remain joyless forever, and that enjoying life does not mean betraying her memory.
Nowadays, fun actually reminds me of Timmi. When she was small, she was one of the most lively, fun-loving children I’ve ever seen, dancing around the house, making up games with her friends, just generally sparkling like a little sprite. She was a wonderful mimic, and used to sing the songs and tell the stories we listened to this evening in all the voices on the records. After Timmi became ill, she preserved that fierce life-force, that desire to fully live her life and get the most out of it. However hard things got for her, there were always some moments when that life-force would break through and transport her out of her pain. People often ask themselves, “How can these children take it?” Fun is one of the answers. Timmi's ability to enjoy herself, even for a few minutes at a time, helped her to go on without succumbing to despair.
As time passes, and Timmi’s life gradually takes a greater place in my consciousness than do her suffering and death, my own capacity for enjoying life is gradually growing. And, in turn, as I allow myself more fun, my memories of Timmi become happier and happier. Timmi once expressed her fear that she was disappearing, that her personality was becoming nothing more than the cancer that was eating her from within. The last thing she would have wanted would have been for us to remember her only in her illness and death - that would mean the cancer had won. But the true Timmi didn’t at all disappear as she had feared. She is present every time we do something that calls to mind the joyful times we had together with her.
And so, as our family eats, sings and dances with gusto in celebration of God’s gift to humanity of the many and diverse forms of life that make up the natural world, we’re also celebrating that special and irreplaceable life that was Timmi’s.
Shavua Tov to everyone!
Last week was more difficult for Timmi than the week before, but the medical news, so far as the success of the transplant is concerned, is excellent - her white blood cell count went up so quickly that as of Friday she is no longer in isolation, although still hospitalized. In other words, it is quite clear that the transplant "took".
Physically, Timmi suffered much more than the week before, but still not nearly as much as during the first transplant. (She herself never loses sight of this and is quite grateful that things are not as bad as she had feared.) She had (still has, to some degree) mucositis, or damage by the chemical preparation for the transplant, in the mucous membranes of her throat and mouth, which was painful and made it very hard to swallow. In addition, she had various digestive tract problems, and often felt quite weak. All this was up and down, however - Thursday, for example, she felt really quite good and was very active, and then on Friday all her muscles started hurting and she felt dizzy, weak and nauseated. Then on Shabbat she felt better again. We need a lot of patience for this stuff.
Through all this, her mood has been remarkably good - serene is the word, I think. Whenever she felt relatively strong, she insisted on doing everything for herself, getting up and showering without assistance, for example. She also was as active as she could be – one day she helped Tehila E. (Sidra's wonderful daughter, who works at the hospital and has become good friends with Timmi) study for her psychometric exam, and another day gave Tehila a Reiki treatment! On Thursday we listened to jazz (especially Louis Armstrong - now, that would cheer anyone up!), and danced to it (Timmi danced sitting up in bed, with her upper body) and she read me two chapters from Khalil Gibran's The Prophet. She really seems to appreciate what there is to appreciate about life - one day she told Daniel how good it is to have people that love her. Altogether, she thinks and talks a great deal how love is really the most important thing in life. She certainly won't get an argument from me.
Now, we wait for the crucial news - whether and how much GVH there will be, and whether the treatment will be effective against the cancer. As I said, patience.
Love,
Sara
January 24, 2005
This evening, Don and I celebrated the Israeli holiday of Tu B’Shvat with several of our children. Originally set as the date by which we determine a tree’s age in order to know when its fruit is first permitted to us by Biblical law, this day has evolved in Israel into a celebration of the natural world. In accordance with the local custom, we ate fruits (both native to the Land of Israel and introduced here in modern times) and nuts, and sang songs about the land and its bounty.
Well, at first songs about the land itself, then songs containing any reference to any part of the land (including a couple of spirituals about the River Jordan). This reminded us of other songs we used to sing together when the children were young, and we enthusiastically sang those too. I then went a step further and put on a couple of records we used to play for the children when they were small, and we all joined in, singing and dancing along with the songs and listening raptly to the stories. Although the evening had started out with some strain between me and one of the older girls, the tension melted away as soon as we started singing together. Things got more raucous as the evening advanced, and we ended up having a truly wonderful time. Even better, for much of the evening it felt to me as if Timmi were also joining in.
It’s easy, with the myriad and sometimes conflicting obligations of modern living, to see fun as a luxury. Many of us do things just for the fun of it only when we’ve “earned” that right by taking care of all of our (supposedly) more serious and important business. But I’ve learned that fun is not a prize that we may allow ourselves to enjoy only if we’ve behaved well. Fun is definitely one of life’s necessities!
I think this is especially true of children who have disabilities or diseases that harm their quality of life. Fun takes them out of their bodies for a while, allows them a kind of breather from their troubles. Some people even hold that fun can give sick children more time. I don’t know if that’s true, but there’s no doubt that, at the very least, fun made Timmi’s too-short time in this world much happier.
Don and I spent a lot of time, energy and other resources arranging trips, outings, movies, concerts, plays – anything that Timmi might enjoy. Others helped as well, especially the dedicated people at Zichron Menachem, an organization founded by Chaim and Miri Ehrenthal in memory of their son Menachem who died of cancer after more than ten years of struggle. They run camps and a daytime center, persuade performers (well-known singers, magicians, you name it) to appear for the children, send volunteers into the hospitals to play with the children, throw parties in and outside of the hospital, and generally do everything in their power to show the kids a good time. Thanks to Miri and Chaim, Timmi rode horses and donkeys, drove mini-tractors, flew in a helicopter (several times!), water-skied in Eilat, and who knows what-all. With the other Zichron Menachem children, she visited the ancient city of Petra in Jordan. (That trip was jointly sponsored by Paul Newman and one of the princes of the Jordanian royal family; the prince also spent time with the children, pushing their wheelchairs and generally hanging with them.) Timmi would also have gone to Paris with Zichron Menachem, if she hadn’t had a terrible attack of pain just when they were due to leave, but I got to make that up to her (see “Paris”).
Through a different organization, Kav LeChaim (Lifeline), Timmi also attended Camp Simha (Happiness) in New York, where she had, by her own account, two of the best weeks of her life. A third organization, HaChaim (Life), took Timmi to London. She had quite a difficult time in London, as at the time she was taking very high doses of steroids, which badly affected both her body and her mood. But even so she brought home a few wonderful memories, most especially of the production of “The Lion King” that the children got to see on the London stage. I have several pictures of Timmi, her face and body completely bloated from the steroids, beaming as she stands arm in arm with each member of the cast. I feel at the same time like crying at the image of her distorted body, and laughing with her as she enjoys the musical and the backstage visit.
For quite a while after Timmi died, fun became off limits to our family. Our grief was just too strong. Timmi’s younger siblings often refused to join their friends in group activities. Like many surviving brothers and sisters, they felt that they weren’t entitled to have fun when their sister had so unfairly suffered and died. I also think that for all of us, for different periods of time, having fun felt like a betrayal. It took us a long time to understand that Timmi wouldn't have wanted us to remain joyless forever, and that enjoying life does not mean betraying her memory.
Nowadays, fun actually reminds me of Timmi. When she was small, she was one of the most lively, fun-loving children I’ve ever seen, dancing around the house, making up games with her friends, just generally sparkling like a little sprite. She was a wonderful mimic, and used to sing the songs and tell the stories we listened to this evening in all the voices on the records. After Timmi became ill, she preserved that fierce life-force, that desire to fully live her life and get the most out of it. However hard things got for her, there were always some moments when that life-force would break through and transport her out of her pain. People often ask themselves, “How can these children take it?” Fun is one of the answers. Timmi's ability to enjoy herself, even for a few minutes at a time, helped her to go on without succumbing to despair.
As time passes, and Timmi’s life gradually takes a greater place in my consciousness than do her suffering and death, my own capacity for enjoying life is gradually growing. And, in turn, as I allow myself more fun, my memories of Timmi become happier and happier. Timmi once expressed her fear that she was disappearing, that her personality was becoming nothing more than the cancer that was eating her from within. The last thing she would have wanted would have been for us to remember her only in her illness and death - that would mean the cancer had won. But the true Timmi didn’t at all disappear as she had feared. She is present every time we do something that calls to mind the joyful times we had together with her.
And so, as our family eats, sings and dances with gusto in celebration of God’s gift to humanity of the many and diverse forms of life that make up the natural world, we’re also celebrating that special and irreplaceable life that was Timmi’s.
Sunday, January 16, 2005
Family
December 30, 1999
Timmi's bone marrow transplant took place in two parts, on Sunday and on Monday. The transplant itself went exceedingly well, with no adverse effects for Timmi. This was a true relief for all of us, as we remembered how during the first transplant in 1995 Timmi felt so awful that she just slept through it in a fog of morphine. This time, though, she received the cells and didn't feel a thing. The donation was harder on Shari than we had expected, though - her veins are not so great, and so while the time she spent on the machine separating her bone marrow cells from the other parts of her blood was better than having the marrow removed the old-fashioned way (directly from the bone under general anesthesia), it was quite uncomfortable for her. The good part for her, though, besides her happiness at being able to contribute to Timmi's treatment, is that once off the machine the second time she immediately started to feel better; now she is fine. Lisa, on the other hand, had pain for several months after donating in 1995.
Timmi has so far continued to feel quite impressively fine, with some weakness and a little pain (which is easily taken care of by the morphine) but otherwise quite alert, with a good mood and even a good appetite. Things should just continue this way.
The next stage is to see next week whether her blood counts start going up. Actually they are not at zero now, but my understanding is that they can still fluctuate, and what we will be looking for is a steady upward trend. With the rising blood count we will be looking for signs of GVH (Graft Versus Host Disease), of which we want enough to fight the cancer but not too much, which could be fatal or seriously disabling.
Anyway, as I mentioned our main feeling concerning the immediate situation is relief, and hope that the process will continue not to be too hard on her.
Shabbat Shalom -
Sara
January 14, 2005
It’s toward the end of Friday afternoon, and Shabbat is approaching. Shari is cleaning the house, and the radio is playing oldies, both in Hebrew and in English. Aimee is also at home now, having made the soup while I did the other Shabbat cooking. Don just returned from the gym, and is beginning to braid the Challah* that he bakes every Friday. Just a humdrum kind of day, with nothing special or exciting happening. But I feel a strong sense of serenity and wellbeing, and I know why. It’s because I’m sharing the day with my family.
When I was growing up I never dreamed that one day I’d have seven children. So much work! So many problems to worry about! So many complicated family relationships! But what I didn’t know then was how each child would enrich my world. Coming from a rather traumatized family, I had no idea of the extent to which my home would become a haven. Our home has been a demanding haven, with problems and tensions that we can’t always resolve. But it’s also been the only place where I've been able to find true peace after the earthquake of Timmi’s death.
Timmi, I’m told by her therapist, felt very much surrounded by love in the family. There were many times when the cancer and the medications she took to fight it caused her to become depressed or anxious, or otherwise negatively affected her emotional state. Then, she would sometimes fall into despair and feel abandoned by the world. But the love she received from her family helped her through these times. This was even more important when she felt cut off from other girls her age. At home, she could always express herself freely, even if what she had to say sometimes was very, very hard to hear. She didn’t have to worry that she’d scare us away.
It’s common to speak of families as “sharing blood,” but the metaphor literally described our experience. Three(!) of Timmi’s sisters had bone marrow that matched hers – Lisa, Shari and Elaine. Lisa and Shari were able to give Timmi an extra chance at life by substituting their healthy bone marrow for hers. Both felt it was a true privilege. Elaine was very disappointed when we didn’t use her bone marrow in either transplant, and Sheila, Aimee and Danny were upset that their bone marrow didn’t match Timmi’s. All wanted so much to contribute part of their own bodies to our attempts to save her. What they didn't understand then was that just by loving Timmi they were already doing a huge amount to sustain her, even if her despair with the world sometimes spilled over into her relationships with them.
After Timmi died, and we sat for seven days in a house that sometimes felt like Grand Central Station – with people coming all day to bring us food, to talk, and just to sit with us – those times that we had alone together felt like precious islands of tranquility. In fact, there was a very long period when the only moments I felt any kind of peace at all were when all my surviving children were present together with me in the house – preferably in the same room. The children felt the same – as Lisa said, we felt safe when we were together. In many ways, that's still how it is for me.
True, it’s when we’re all together that I feel Timmi’s absence most. And it's a terrible thing not to be able to look around me and say, here I am with my whole family. Our family can never again be truly whole. But I believe that when people have deeply loved each other, each leaves a part of herself with the others. Just as Lisa and Shari shared with Timmi the deepest part of their physical selves, each of us gave Timmi a part of our spiritual core – and received a portion of her spirit in return. And so, paradoxically, it’s when all of us are together and Timmi’s absence is felt the most painfully that I feel – as my friend Robert Avrech says of his own precious son Ariel in his blog Seraphic Secret** – that her absence most becomes presence.
Of course, as in any family, we and our children live with ongoing tensions and arguments, and Don and I spend a great deal of time and energy taking care of the children’s physical and emotional health and worrying about their future. These problems are all the more complex, given that there are so many different lives and relationships to take into account. But – and this is the most important thing – each member of our family carries a piece of all the others, including Timmi, inside. And so when I'm with Don and my children, who shared such a deep love with Timmi, I feel most deeply the presence of that part of her essence that she left behind.
*Challah – loaves of special bread that Jews eat at their Shabbat meals.
** See the Links section of this blog.
Timmi's bone marrow transplant took place in two parts, on Sunday and on Monday. The transplant itself went exceedingly well, with no adverse effects for Timmi. This was a true relief for all of us, as we remembered how during the first transplant in 1995 Timmi felt so awful that she just slept through it in a fog of morphine. This time, though, she received the cells and didn't feel a thing. The donation was harder on Shari than we had expected, though - her veins are not so great, and so while the time she spent on the machine separating her bone marrow cells from the other parts of her blood was better than having the marrow removed the old-fashioned way (directly from the bone under general anesthesia), it was quite uncomfortable for her. The good part for her, though, besides her happiness at being able to contribute to Timmi's treatment, is that once off the machine the second time she immediately started to feel better; now she is fine. Lisa, on the other hand, had pain for several months after donating in 1995.
Timmi has so far continued to feel quite impressively fine, with some weakness and a little pain (which is easily taken care of by the morphine) but otherwise quite alert, with a good mood and even a good appetite. Things should just continue this way.
The next stage is to see next week whether her blood counts start going up. Actually they are not at zero now, but my understanding is that they can still fluctuate, and what we will be looking for is a steady upward trend. With the rising blood count we will be looking for signs of GVH (Graft Versus Host Disease), of which we want enough to fight the cancer but not too much, which could be fatal or seriously disabling.
Anyway, as I mentioned our main feeling concerning the immediate situation is relief, and hope that the process will continue not to be too hard on her.
Shabbat Shalom -
Sara
January 14, 2005
It’s toward the end of Friday afternoon, and Shabbat is approaching. Shari is cleaning the house, and the radio is playing oldies, both in Hebrew and in English. Aimee is also at home now, having made the soup while I did the other Shabbat cooking. Don just returned from the gym, and is beginning to braid the Challah* that he bakes every Friday. Just a humdrum kind of day, with nothing special or exciting happening. But I feel a strong sense of serenity and wellbeing, and I know why. It’s because I’m sharing the day with my family.
When I was growing up I never dreamed that one day I’d have seven children. So much work! So many problems to worry about! So many complicated family relationships! But what I didn’t know then was how each child would enrich my world. Coming from a rather traumatized family, I had no idea of the extent to which my home would become a haven. Our home has been a demanding haven, with problems and tensions that we can’t always resolve. But it’s also been the only place where I've been able to find true peace after the earthquake of Timmi’s death.
Timmi, I’m told by her therapist, felt very much surrounded by love in the family. There were many times when the cancer and the medications she took to fight it caused her to become depressed or anxious, or otherwise negatively affected her emotional state. Then, she would sometimes fall into despair and feel abandoned by the world. But the love she received from her family helped her through these times. This was even more important when she felt cut off from other girls her age. At home, she could always express herself freely, even if what she had to say sometimes was very, very hard to hear. She didn’t have to worry that she’d scare us away.
It’s common to speak of families as “sharing blood,” but the metaphor literally described our experience. Three(!) of Timmi’s sisters had bone marrow that matched hers – Lisa, Shari and Elaine. Lisa and Shari were able to give Timmi an extra chance at life by substituting their healthy bone marrow for hers. Both felt it was a true privilege. Elaine was very disappointed when we didn’t use her bone marrow in either transplant, and Sheila, Aimee and Danny were upset that their bone marrow didn’t match Timmi’s. All wanted so much to contribute part of their own bodies to our attempts to save her. What they didn't understand then was that just by loving Timmi they were already doing a huge amount to sustain her, even if her despair with the world sometimes spilled over into her relationships with them.
After Timmi died, and we sat for seven days in a house that sometimes felt like Grand Central Station – with people coming all day to bring us food, to talk, and just to sit with us – those times that we had alone together felt like precious islands of tranquility. In fact, there was a very long period when the only moments I felt any kind of peace at all were when all my surviving children were present together with me in the house – preferably in the same room. The children felt the same – as Lisa said, we felt safe when we were together. In many ways, that's still how it is for me.
True, it’s when we’re all together that I feel Timmi’s absence most. And it's a terrible thing not to be able to look around me and say, here I am with my whole family. Our family can never again be truly whole. But I believe that when people have deeply loved each other, each leaves a part of herself with the others. Just as Lisa and Shari shared with Timmi the deepest part of their physical selves, each of us gave Timmi a part of our spiritual core – and received a portion of her spirit in return. And so, paradoxically, it’s when all of us are together and Timmi’s absence is felt the most painfully that I feel – as my friend Robert Avrech says of his own precious son Ariel in his blog Seraphic Secret** – that her absence most becomes presence.
Of course, as in any family, we and our children live with ongoing tensions and arguments, and Don and I spend a great deal of time and energy taking care of the children’s physical and emotional health and worrying about their future. These problems are all the more complex, given that there are so many different lives and relationships to take into account. But – and this is the most important thing – each member of our family carries a piece of all the others, including Timmi, inside. And so when I'm with Don and my children, who shared such a deep love with Timmi, I feel most deeply the presence of that part of her essence that she left behind.
*Challah – loaves of special bread that Jews eat at their Shabbat meals.
** See the Links section of this blog.
Saturday, January 08, 2005
Lovingkindness
December 26, 1999
Since last Friday (December 17) Timmi has been sleeping in the hospital, and is in "isolation". This is not as scary as it sounds; all it means is that she should not have too many visitors at once, and that whoever goes into her room should wear a mask and wash hands first. Also, no flowers and no food from restaurants. We are now at day "minus one" or "minus two", which means that the transplant itself will happen tomorrow and/or Monday. So far the preparatory drugs, although they are purposely destroying her immune system, are causing far fewer side effects than she had the first transplant around. This means that she is feeling relatively energetic, and her mood has been quite good. There was one day that she received a particularly nasty drug and felt quite awful, but got morphine which helped her get through pretty reasonably. Also, there were two days in a row when she had to take 120(!) pills each day, which was no fun. But Friday morning she managed to spend about two hours working on the Escher jigsaw puzzle that she is putting together, so as I said she's in pretty good shape. Shabbat also went relatively well, with Don as usual staying with her in the hospital.
By the way, Don slept there for seven out of the eight nights she has so far been hospitalized, because flu season made Shari and Ma'ayan (a friend of Lisa’s who sometimes sleeps with Timmi at the hospital) unable to be with Timmi. The coming week looks to be easier from that point of view, although if things don't go well we may decide that a parent should be there. As for me, I am quite tired, as I spend just about all day every day in the hospital. Right now my life is paradoxically slow but stressed - there is not that much for me to actually do at the hospital, although I need to be there, but I leave each evening feeling exhausted. Shabbat was nice, though, and I feel more rested now.
Thank you all for your continued love and support. Shavua Tov.*
Love,
Sara
*Shavua Tov – Have a good week.
January 7, 2005
The outpouring of concern and aid to the victims of last week’s tragic tsunami makes me think again how extreme situations often bring people to incredible levels of hesed (lovingkindness). Our family certainly experienced a great deal of hesed while Timmi was sick. I’ve already written about the love and assistance we received from our religious community.* But while many people did a great deal for Timmi and our family during her illness, there were some who went to a huge amount of trouble to help us all get though those terrible times.
There was Debbie G., who arranged the logistics of all the help we received from our community, from Shabbat meals to rides to the hospital. There was my close friend Tova, whom I could always call (even at the last minute) if Timmi was to be hospitalized over the weekend, and she would host me and whatever children were at home for a Shabbat meal. There was also Ma’ayan, who slept several times with Timmi in the hospital, despite the emotional and physical difficulties of spending time in the children’s cancer ward.
Don, of course, spent innumerable nights in the hospital, closely followed Timmi’s nursing care to make sure she was getting the correct medications at the correct times, and did a million other things that a devoted parent does for a seriously ill child. Lisa freely gave her own bone marrow in the hope that it would save Timmi, and suffered pain for several months afterward (more about that in my next post). Don’s extended family also made great efforts to help in any way they could. Don’s brother’s wife, Malka, for example, worked at the hospital and visited Timmi just about every single day that Timmi was hospitalized. Malka also used her connections in the hospital to ensure that Timmi always got the best care, and once even arranged for some surgery that Timmi needed to be performed free of charge by a senior surgeon at a private hospital. Timmi’s grandmother (Don’s mother), who was not in good health at the time and rarely left her home city, took three buses in each direction almost every week to visit Timmi during her first illness.
But it was Shari – two years older than Timmi, and the sister closest to her (in age and in other ways) – who did things for Timmi that went way beyond what a sister (and a teenager at that) might have been expected to do. In fact, in all the time I was with Timmi in the hospital, I never saw another sick child’s sister or brother do as much for the child as Shari did for Timmi.
Shari slept at the hospital a good number of the nights Timmi was hospitalized, both during Timmi’s first illness (when Shari was only 14) and after her relapse. She and Timmi used to stay up late giggling watching TV and eating together (if Timmi could eat) all the candy and other junk people brought Timmi as gifts. Shari was very competent, knowing exactly how to react and when to call the nurse if there was some special problem. Also, she could sleep just about anywhere, which was one of the reasons she slept with Timmi at the hospital so much of the time. A hospital is a very noisy place at night, with machines beeping, nurses and parents calling to each other, and other children in the room receiving urgent medical attention at all hours of the night. Shari was able to sleep through it all. She slept so well, in fact, that she just about never got up early enough to make it to school on time, which I suppose was an advantage as far as she was concerned – the perfect excuse to be late to school!
The only problem with Shari’s sleeping pattern was that she slept so deeply that Timmi couldn’t wake her up if she needed help in the middle of the night. The two of them eventually solved the problem by deciding that Timmi would wake Shari by throwing a shoe or some other object at her. What can I say? It worked.
Shari’s willingness to be awakened in the middle of the night by having a shoe thrown at her was only one manifestation of her exceptional kindness to Timmi. She was always willing to run and do just about any errand, whether Timmi was in the hospital or at home. She spent a huge amount of time with her, often missing outings with her own friends, when Timmi seemed lonely.
The story that best expresses Shari’s lovingkindness toward Timmi, I think, took place during first series of hospitalizations. Timmi’s grandmother had brought her some special stones (I remember one was a “Tiger’s Eye”) that are said to have special healing powers. Timmi, who loved her grandmother very much, wanted the stones near her at all times, and kept them in the pocket of her hospital pajamas. One morning, the nurse brought Timmi a new pair of pajamas so that the old one could be laundered. After the pajamas were taken away, Timmi realized that the stones had been sent to the laundry as well, and became extremely distressed.
Shari simply went to the hospital laundry room. She wasn’t put off by the hundreds of identical, dirty pajamas and hospital gowns piled on the floor of the huge room, but went through the pockets of every pair of pajamas until she found the stones and returned them to Timmi.
I believe very strongly that loving acts of kindness give not only to the people to whom they’re directed, but also to those who perform them. I saw a touching example of this two days ago, when I paid a condolence call to Charlie G., whose 38-year-old daughter Elisheva died a week ago after a short and brutal illness. I was sitting with him listening to him speak about his daughter, who was a writer and an actress, as Timmi had aspired to be. A young man came over and introduced himself as one of Elisheva’s creative writing students. As he spoke of her, he was overcome by sadness and started crying. Charlie moved over to him, took his hand, looked into his eyes, and remained that way until the young man stopped weeping.
At first, I was uncomfortable with sight of Charlie comforting his daughter’s student, and thought the student self-centered for letting himself cry that way – after all, Charlie’s loss was so much greater! It reminded me very vividly of my own experiences of people coming to me in tears when Timmi was diagnosed and after she died, and my feelings when I found myself comforting them. Like Charlie, I’d find myself touching these people on the arm, sometimes stroking them, and smiling to let them know that I knew how they were feeling. There was a period when I resented this, feeling that it was unfair of these people to demand so much of my own terribly depleted store of energy.
But reflecting now on Charlie’s gesture, and on my own similar actions all those years ago, I see that there was something deeply healing in our ability to give strength to others even in the midst of our own unspeakable tragedy. Far from draining us, these acts really gave us strength and comfort when we most needed it. In comforting others, we were helping to heal ourselves.
In the end, and more than anything, it is lovingkindness – both to others and to ourselves – that can sustain us in a cruel world and help us become the best human beings that we can be, even at the blackest of times.
* See “Community,” October 2004.
Since last Friday (December 17) Timmi has been sleeping in the hospital, and is in "isolation". This is not as scary as it sounds; all it means is that she should not have too many visitors at once, and that whoever goes into her room should wear a mask and wash hands first. Also, no flowers and no food from restaurants. We are now at day "minus one" or "minus two", which means that the transplant itself will happen tomorrow and/or Monday. So far the preparatory drugs, although they are purposely destroying her immune system, are causing far fewer side effects than she had the first transplant around. This means that she is feeling relatively energetic, and her mood has been quite good. There was one day that she received a particularly nasty drug and felt quite awful, but got morphine which helped her get through pretty reasonably. Also, there were two days in a row when she had to take 120(!) pills each day, which was no fun. But Friday morning she managed to spend about two hours working on the Escher jigsaw puzzle that she is putting together, so as I said she's in pretty good shape. Shabbat also went relatively well, with Don as usual staying with her in the hospital.
By the way, Don slept there for seven out of the eight nights she has so far been hospitalized, because flu season made Shari and Ma'ayan (a friend of Lisa’s who sometimes sleeps with Timmi at the hospital) unable to be with Timmi. The coming week looks to be easier from that point of view, although if things don't go well we may decide that a parent should be there. As for me, I am quite tired, as I spend just about all day every day in the hospital. Right now my life is paradoxically slow but stressed - there is not that much for me to actually do at the hospital, although I need to be there, but I leave each evening feeling exhausted. Shabbat was nice, though, and I feel more rested now.
Thank you all for your continued love and support. Shavua Tov.*
Love,
Sara
*Shavua Tov – Have a good week.
January 7, 2005
The outpouring of concern and aid to the victims of last week’s tragic tsunami makes me think again how extreme situations often bring people to incredible levels of hesed (lovingkindness). Our family certainly experienced a great deal of hesed while Timmi was sick. I’ve already written about the love and assistance we received from our religious community.* But while many people did a great deal for Timmi and our family during her illness, there were some who went to a huge amount of trouble to help us all get though those terrible times.
There was Debbie G., who arranged the logistics of all the help we received from our community, from Shabbat meals to rides to the hospital. There was my close friend Tova, whom I could always call (even at the last minute) if Timmi was to be hospitalized over the weekend, and she would host me and whatever children were at home for a Shabbat meal. There was also Ma’ayan, who slept several times with Timmi in the hospital, despite the emotional and physical difficulties of spending time in the children’s cancer ward.
Don, of course, spent innumerable nights in the hospital, closely followed Timmi’s nursing care to make sure she was getting the correct medications at the correct times, and did a million other things that a devoted parent does for a seriously ill child. Lisa freely gave her own bone marrow in the hope that it would save Timmi, and suffered pain for several months afterward (more about that in my next post). Don’s extended family also made great efforts to help in any way they could. Don’s brother’s wife, Malka, for example, worked at the hospital and visited Timmi just about every single day that Timmi was hospitalized. Malka also used her connections in the hospital to ensure that Timmi always got the best care, and once even arranged for some surgery that Timmi needed to be performed free of charge by a senior surgeon at a private hospital. Timmi’s grandmother (Don’s mother), who was not in good health at the time and rarely left her home city, took three buses in each direction almost every week to visit Timmi during her first illness.
But it was Shari – two years older than Timmi, and the sister closest to her (in age and in other ways) – who did things for Timmi that went way beyond what a sister (and a teenager at that) might have been expected to do. In fact, in all the time I was with Timmi in the hospital, I never saw another sick child’s sister or brother do as much for the child as Shari did for Timmi.
Shari slept at the hospital a good number of the nights Timmi was hospitalized, both during Timmi’s first illness (when Shari was only 14) and after her relapse. She and Timmi used to stay up late giggling watching TV and eating together (if Timmi could eat) all the candy and other junk people brought Timmi as gifts. Shari was very competent, knowing exactly how to react and when to call the nurse if there was some special problem. Also, she could sleep just about anywhere, which was one of the reasons she slept with Timmi at the hospital so much of the time. A hospital is a very noisy place at night, with machines beeping, nurses and parents calling to each other, and other children in the room receiving urgent medical attention at all hours of the night. Shari was able to sleep through it all. She slept so well, in fact, that she just about never got up early enough to make it to school on time, which I suppose was an advantage as far as she was concerned – the perfect excuse to be late to school!
The only problem with Shari’s sleeping pattern was that she slept so deeply that Timmi couldn’t wake her up if she needed help in the middle of the night. The two of them eventually solved the problem by deciding that Timmi would wake Shari by throwing a shoe or some other object at her. What can I say? It worked.
Shari’s willingness to be awakened in the middle of the night by having a shoe thrown at her was only one manifestation of her exceptional kindness to Timmi. She was always willing to run and do just about any errand, whether Timmi was in the hospital or at home. She spent a huge amount of time with her, often missing outings with her own friends, when Timmi seemed lonely.
The story that best expresses Shari’s lovingkindness toward Timmi, I think, took place during first series of hospitalizations. Timmi’s grandmother had brought her some special stones (I remember one was a “Tiger’s Eye”) that are said to have special healing powers. Timmi, who loved her grandmother very much, wanted the stones near her at all times, and kept them in the pocket of her hospital pajamas. One morning, the nurse brought Timmi a new pair of pajamas so that the old one could be laundered. After the pajamas were taken away, Timmi realized that the stones had been sent to the laundry as well, and became extremely distressed.
Shari simply went to the hospital laundry room. She wasn’t put off by the hundreds of identical, dirty pajamas and hospital gowns piled on the floor of the huge room, but went through the pockets of every pair of pajamas until she found the stones and returned them to Timmi.
I believe very strongly that loving acts of kindness give not only to the people to whom they’re directed, but also to those who perform them. I saw a touching example of this two days ago, when I paid a condolence call to Charlie G., whose 38-year-old daughter Elisheva died a week ago after a short and brutal illness. I was sitting with him listening to him speak about his daughter, who was a writer and an actress, as Timmi had aspired to be. A young man came over and introduced himself as one of Elisheva’s creative writing students. As he spoke of her, he was overcome by sadness and started crying. Charlie moved over to him, took his hand, looked into his eyes, and remained that way until the young man stopped weeping.
At first, I was uncomfortable with sight of Charlie comforting his daughter’s student, and thought the student self-centered for letting himself cry that way – after all, Charlie’s loss was so much greater! It reminded me very vividly of my own experiences of people coming to me in tears when Timmi was diagnosed and after she died, and my feelings when I found myself comforting them. Like Charlie, I’d find myself touching these people on the arm, sometimes stroking them, and smiling to let them know that I knew how they were feeling. There was a period when I resented this, feeling that it was unfair of these people to demand so much of my own terribly depleted store of energy.
But reflecting now on Charlie’s gesture, and on my own similar actions all those years ago, I see that there was something deeply healing in our ability to give strength to others even in the midst of our own unspeakable tragedy. Far from draining us, these acts really gave us strength and comfort when we most needed it. In comforting others, we were helping to heal ourselves.
In the end, and more than anything, it is lovingkindness – both to others and to ourselves – that can sustain us in a cruel world and help us become the best human beings that we can be, even at the blackest of times.
* See “Community,” October 2004.
Saturday, January 01, 2005
The Most Fitting Memorial
January 1, 2005
At my bereavement group’s meeting last week, the fact that I hadn’t attended the previous week due to Timmi’s yahrzeit sparked a discussion of memorial services, funerals and other ceremonies related to a loved one’s death. The discussion turned to the question: how do we perpetuate the memory of our departed? One group member, I’ll call him David, whose mother died 21 years ago when he was eleven years old, spoke of his plans to organize a gathering of people who had known his mother before he was born. At this gathering, David will listen to these friends’ and relatives’ memories of his mother and, perhaps, will ask questions about her life that he’ll never have the chance to ask his mother herself.
Another man, “Michael,” told us that before she died, his wife planned her own funeral and memorial service, which included a videotape she'd made in which she spoke to those present, and even sang – to the accompaniment of live musicians whom she'd requested be invited to the funeral. She also asked that trees be planted in her memory at the bird sanctuary in Jerusalem. Michael related that she'd expressed her wish that the anniversaries of her death be marked by a picnic under those trees. That is what Michael intends to do when her first yahrzeit comes around in a few months.
Although I write this blog in Timmi’s memory, and hope that in a small way I’m "bringing her to life” for my readers, and although the parochet** for the High Holidays that we donated to our synagogue now bears her name, these things were not the first that came to my mind when it was my turn to speak. What I said was that I feel that the most fitting and most important memorial to Timmi is what she left behind in the hearts of those that knew her. I was thinking of the many people who’ve told me how deeply Timmi affected them, but most especially of the gatherings that her high school classmates hold in her memory every year around her yahrzeit.
I’ve been present at the last two of these gatherings. Both times, the girls watched a videotape of a performance that Timmi had given in the framework of her drama class, studied one or more texts related to the performance, and discussed the texts in the light of the questions: What did Timmi teach us through her performances? What do we continue to learn from her today?
Last year, the girls screened a video of the monologue Timmi had created from the two stories in the Book of Genesis that tell of Hagar, the matriarch Sarah’s servant who bore Abraham’s first son Ishmael. Unusually, perhaps, for a religious Jewish girl, Timmi told Hagar’s story out of a deep identification with Hagar. She channeled into this monologue all of her own feelings of anger at a cruel fate, frustration at a life that was turning out to be so different from the one she’d envisioned, and pride at being who she was despite (because of?) that difference. The group then discussed the Biblical texts upon which the monologue was based; Timmi’s classmates felt that her performance taught them a great deal about empathy for the Other, and about how tragedy is tragedy no matter whom it befalls.
This year, the group watched the tape of Timmi’s rendition of Katharina in Shakespeare’s The Taming of the Shrew. She took several separate lines and speeches of Katharina’s and wove them into a seamless monologue. In the first section, Katharina comes in limping, crying, and begging for mercy from her husband, who is trying to starve her into becoming a submissive wife. As we watched this part, I think that all in the room remembered that Timmi's limp was genuine, as she performed this monologue after her leukemia had returned, when she was in a great deal of pain from the cancer’s spread.
The last part of Timmi’s monologue was extremely creative and original and, as with her Hagar performance, she used it to express many of her feelings about her own struggle. In her last speech, Katharina, who has seemingly been duly “tamed,” gives a long speech about the duties a wife owes her husband because it is he who goes out into the world and faces the cruel elements in order to support and shelter her. Timmi, however – without changing a word of this speech, the words of which have made many a modern feminist shudder – managed to turn it into a bitter protest against the fate of women forced to fit into their traditional roles. As she limped off the stage, it was clear that Timmi’s Katharina had not truly given in, and would find a way of getting her own back.
Many of Timmi’s classmates spoke of their memories of Timmi and what they felt she had given them. All felt that she had gone through her ordeal with incredible strength and grace, and even with an ironic sense of humor. One girl told a story that others had told me many times before, about how during a break she came back from the snack stand with a yellow ice pop. When reminded that yellow artificial food coloring could be dangerous, she replied, “So what’ll happen to me? I’ll get cancer?”
(I say “girls,” but I should really say “young women,” as Timmi’s classmates are now 22 years old, and some are married already. I think it’s still too hard for me to truly acknowledge that they have continued to grow into adulthood, and into a future that Timmi will never know.)
Watching these videos, like looking at Timmi’s pictures, is always a mixed experience for me. One the one hand, these images bring forth warm memories and gratitude that I have concrete objects that can help keep her alive in my heart. On the other hand, every time I watch or look, I’m wrenchingly reminded that there will be no more performances, no more pictures, no more poems. Is this the sum total of the human being that was my daughter?
But I’m glad I keep looking, because no, there is no fixed and immutable sum total. Even though Timmi is no longer with us, she's still teachig us. If, as she did, we can learn to channel our own pain into empathy for others; if we can refuse to submit to injustices that our society takes for granted; if we can take our own experience, no matter how hard, and use it to create works that enable others to see the world from a fresh and unusual perspective – that, I believe, will truly be Timmi’s most fitting memorial.
*See my previous post.
**Parochet – the curtain of the ark holding a synagogue’s Torah scrolls.
At my bereavement group’s meeting last week, the fact that I hadn’t attended the previous week due to Timmi’s yahrzeit sparked a discussion of memorial services, funerals and other ceremonies related to a loved one’s death. The discussion turned to the question: how do we perpetuate the memory of our departed? One group member, I’ll call him David, whose mother died 21 years ago when he was eleven years old, spoke of his plans to organize a gathering of people who had known his mother before he was born. At this gathering, David will listen to these friends’ and relatives’ memories of his mother and, perhaps, will ask questions about her life that he’ll never have the chance to ask his mother herself.
Another man, “Michael,” told us that before she died, his wife planned her own funeral and memorial service, which included a videotape she'd made in which she spoke to those present, and even sang – to the accompaniment of live musicians whom she'd requested be invited to the funeral. She also asked that trees be planted in her memory at the bird sanctuary in Jerusalem. Michael related that she'd expressed her wish that the anniversaries of her death be marked by a picnic under those trees. That is what Michael intends to do when her first yahrzeit comes around in a few months.
Although I write this blog in Timmi’s memory, and hope that in a small way I’m "bringing her to life” for my readers, and although the parochet** for the High Holidays that we donated to our synagogue now bears her name, these things were not the first that came to my mind when it was my turn to speak. What I said was that I feel that the most fitting and most important memorial to Timmi is what she left behind in the hearts of those that knew her. I was thinking of the many people who’ve told me how deeply Timmi affected them, but most especially of the gatherings that her high school classmates hold in her memory every year around her yahrzeit.
I’ve been present at the last two of these gatherings. Both times, the girls watched a videotape of a performance that Timmi had given in the framework of her drama class, studied one or more texts related to the performance, and discussed the texts in the light of the questions: What did Timmi teach us through her performances? What do we continue to learn from her today?
Last year, the girls screened a video of the monologue Timmi had created from the two stories in the Book of Genesis that tell of Hagar, the matriarch Sarah’s servant who bore Abraham’s first son Ishmael. Unusually, perhaps, for a religious Jewish girl, Timmi told Hagar’s story out of a deep identification with Hagar. She channeled into this monologue all of her own feelings of anger at a cruel fate, frustration at a life that was turning out to be so different from the one she’d envisioned, and pride at being who she was despite (because of?) that difference. The group then discussed the Biblical texts upon which the monologue was based; Timmi’s classmates felt that her performance taught them a great deal about empathy for the Other, and about how tragedy is tragedy no matter whom it befalls.
This year, the group watched the tape of Timmi’s rendition of Katharina in Shakespeare’s The Taming of the Shrew. She took several separate lines and speeches of Katharina’s and wove them into a seamless monologue. In the first section, Katharina comes in limping, crying, and begging for mercy from her husband, who is trying to starve her into becoming a submissive wife. As we watched this part, I think that all in the room remembered that Timmi's limp was genuine, as she performed this monologue after her leukemia had returned, when she was in a great deal of pain from the cancer’s spread.
The last part of Timmi’s monologue was extremely creative and original and, as with her Hagar performance, she used it to express many of her feelings about her own struggle. In her last speech, Katharina, who has seemingly been duly “tamed,” gives a long speech about the duties a wife owes her husband because it is he who goes out into the world and faces the cruel elements in order to support and shelter her. Timmi, however – without changing a word of this speech, the words of which have made many a modern feminist shudder – managed to turn it into a bitter protest against the fate of women forced to fit into their traditional roles. As she limped off the stage, it was clear that Timmi’s Katharina had not truly given in, and would find a way of getting her own back.
Many of Timmi’s classmates spoke of their memories of Timmi and what they felt she had given them. All felt that she had gone through her ordeal with incredible strength and grace, and even with an ironic sense of humor. One girl told a story that others had told me many times before, about how during a break she came back from the snack stand with a yellow ice pop. When reminded that yellow artificial food coloring could be dangerous, she replied, “So what’ll happen to me? I’ll get cancer?”
(I say “girls,” but I should really say “young women,” as Timmi’s classmates are now 22 years old, and some are married already. I think it’s still too hard for me to truly acknowledge that they have continued to grow into adulthood, and into a future that Timmi will never know.)
Watching these videos, like looking at Timmi’s pictures, is always a mixed experience for me. One the one hand, these images bring forth warm memories and gratitude that I have concrete objects that can help keep her alive in my heart. On the other hand, every time I watch or look, I’m wrenchingly reminded that there will be no more performances, no more pictures, no more poems. Is this the sum total of the human being that was my daughter?
But I’m glad I keep looking, because no, there is no fixed and immutable sum total. Even though Timmi is no longer with us, she's still teachig us. If, as she did, we can learn to channel our own pain into empathy for others; if we can refuse to submit to injustices that our society takes for granted; if we can take our own experience, no matter how hard, and use it to create works that enable others to see the world from a fresh and unusual perspective – that, I believe, will truly be Timmi’s most fitting memorial.
*See my previous post.
**Parochet – the curtain of the ark holding a synagogue’s Torah scrolls.
Saturday, December 25, 2004
Yahrzeit
December 16, 1999
Timmi was hospitalized this last Sunday in the bone marrow transplant department at Hadassah. Because she had a strange blood count, though, the chemo preparation for the transplant did not begin right away, so the doctors could figure out the reason for the abnormal count. This morning, the doctors aspirated and tested her bone marrow, and found that the reason for the abnormality is that, unfortunately, the cancer has spread beyond her bones themselves and into the marrow. This is, of course, not the most reassuring news that we could have gotten, but it was explained to us that this development does not significantly affect her prognosis or her planned treatment, as these already reflected the fact that the disease is active. She took the news in that spirit, and this evening went out with Shari to a movie and dinner.
Tomorrow morning her treatment will start. She will receive chemo that will not have serious side effects during the first few days, and will probably be able to sleep at home tomorrow night but after that she will probably start sleeping in the hospital for at least a month. Next Wednesday Shari* will start receiving daily injections to increase the number of bone marrow cells in her peripheral blood, and then the next Sunday and Monday the cells will be harvested and the transplant will take place.
Timmi definitely does not want adults, even those she knows well, to visit her in the hospital.
As hard as we expect it to be, we are very glad that the process will finally start tomorrow, and pray, of course, that it will be successful. Thank you all for your wishes and prayers as well.
Love,
Sara
Timmi was hospitalized this last Sunday in the bone marrow transplant department at Hadassah. Because she had a strange blood count, though, the chemo preparation for the transplant did not begin right away, so the doctors could figure out the reason for the abnormal count. This morning, the doctors aspirated and tested her bone marrow, and found that the reason for the abnormality is that, unfortunately, the cancer has spread beyond her bones themselves and into the marrow. This is, of course, not the most reassuring news that we could have gotten, but it was explained to us that this development does not significantly affect her prognosis or her planned treatment, as these already reflected the fact that the disease is active. She took the news in that spirit, and this evening went out with Shari to a movie and dinner.
Tomorrow morning her treatment will start. She will receive chemo that will not have serious side effects during the first few days, and will probably be able to sleep at home tomorrow night but after that she will probably start sleeping in the hospital for at least a month. Next Wednesday Shari* will start receiving daily injections to increase the number of bone marrow cells in her peripheral blood, and then the next Sunday and Monday the cells will be harvested and the transplant will take place.
Timmi definitely does not want adults, even those she knows well, to visit her in the hospital.
As hard as we expect it to be, we are very glad that the process will finally start tomorrow, and pray, of course, that it will be successful. Thank you all for your wishes and prayers as well.
Love,
Sara
*Lisa (our oldest daughter) was Timmi's bone marrow donor for her first transplant; Shari (number three and just before Timmi) was the donor for the second.
December 25, 2004
Last Wednesday was Timmi’s fourth yahrzeit (Yiddish for "anniversary of death"). This year we put a lot of thought into how to mark Timmi's yahrzeit. On the one hand, it's important to Don and me to hold the traditional ceremony by her graveside, as we have for the past three years. The ceremony is public, and announced to our religious community, friends and extended family. This is important for two reasons – first, the presence of a minyan (quorum of ten men) allows us to say Kaddish, the prayer sanctifying God’s name that is recited by Jewish mourners at the funeral, during the mourning period following the death, and on the yahrzeit of a close relative. Second, it recognizes Timmi as a person who affected many others beside her immediate family, and gives them the chance to mourn her as well.
Some of our children, though, have a problem with the public ceremony. For them, mourning Timmi is an intensely private affair, and they strongly dislike having others – especially adults, and even more especially adults with whom they have no relationship - present at this most personal of moments. For many of the same reasons that Timmi didn’t want adults to visit her while she was in the hospital, the children become upset when people who are almost strangers come up to them, look at them pityingly and try to touch them – even to hug them. Although I understand that these gestures come from a deep caring, the children find the experience profoundly disturbing. On the other hand, they do want a graveside ceremony at which they may express their mourning on the day of the yahrzeit.
So this year, we decided to hold two ceremonies on Wednesday – a public traditional ceremony followed by private time for just our family. Two days later, the girls in Timmi’s high school class also held a gathering in her memory; I’ll write about that gathering in my next post.
At the public ceremony, we observed the traditional customs of reciting Psalms chosen in accordance with the letters in Timmi’s name, the mourners' Kaddish, and the prayer for remembering the departed, “El Male Rahamim” (Most Merciful God). In the middle of the service, the mother of Timmi’s oldest friend, Nechama, read aloud a very moving letter that Nechama had written from Italy. In her letter Nechama (who knew Timmi since they were babies together) expressed her pain at losing Timmi in words that reflected my feelings and those of many others of the many, many people who loved Timmi. The letter opens thus (I’m translating from Hebrew):
“Four years have already passed, years that seem like an eternity. Years without you. Years of explaining about you, and anger at having to explain at all. When you lay in your deep, final sleep toward the end, your mother invited me to write you a good-bye letter. Good-bye!!! To this day, that letter is somewhere in my head, and I haven’t been able to write it the way it should be written. It’s still not everything I wanted to say. When you left, you tore off a huge piece of me. And not only did that piece go with you, but there’s only one person to whom I could explain it, and that’s you – and you aren’t here. But at the same time, something was added to my life – a greater desire to live, memories and scenes that I take in for both of us, things you never got to experience. How beautiful this world is, how many incredible views I see in my head… and how these views fill with sadness every second that you’re not here.”
At out family’s graveside gathering, we found ourselves especially remembering Timmi the writer. Some of our memories were tinged with the sadness of being reminded that some things have been lost forever. Lisa told us that when Timmi was in high school and Lisa was spending a few months with my sister in California, Timmi mailed her a story she had written. “I’m not going to insult your intelligence by interpreting the story for you,” Timmi wrote in the accompanying letter. Lisa remembered that the story was extremely subtle and complex, and that in fact she did find it hard to understand. But she couldn’t bring herself to ask Timmi to explain it to her. “What, here I was, her big sister, whose intelligence she said she wouldn’t insult by interpreting the story – was I really going to ask her for an explanation?!?” But now there's nothing she’d want more than to ask Timmi what her story meant, and to hear her answer.
Elaine also remembered a story Timmi had written when she was in sixth grade, and Elaine was in third. “I can’t remember the details of the story,” Elaine said. “But I remember thinking at the time that it was the most brilliant story I’d ever read. Years later, I wanted to read the story again, and asked her whatever became of it. She told me she’d thrown it away because it wasn’t good enough.”
But not all of Timmi's writing was lost. Thankfully, she left behind many stories, poems and drafts of poems. And so, as the afternoon drew to a close, as the sun set over the Jerusalem hills, Don sang us one of Timmi’s unfinished poems, which he's set to music. The poem, like much of the writing she left us, is beautiful and painful. But I’m grateful for this pain, because it’s one part of Timmi that’s remained with me.
Again, I translate from the Hebrew:
To live this moment
To breathe this time
Not to think what the future will bring, if anything
Not to remember what hurt, what was missed, what was lost
To enjoy the here and now.
Or
To move away from what is
To glide out of time
Toward a dream that was, that will be, that can be
And to forget all the tormented present
Because the truth is unthinkable.
Saturday, December 18, 2004
Reversals of Fortune
December 5, 1999
Well, as seems to have happened quite often since Timmi's relapse, the plans for her treatment have been interrupted. As I mentioned in my last update, Timmi was formally hospitalized in the bone marrow transplant department last Wednesday in anticipation of the transplant, although she has slept each night since then at home and was home for Shabbat as well. The plan was for her to start the preparatory chemotherapy tomorrow, and for the transplant itself to take place in about two weeks.
Unfortunately, a low fever that Timmi had been having on and off over the last few days, instead of going away as we had hoped, developed over Shabbat into a serious fever (39C). As a result, she went into the hospital tonight (Saturday night) and will probably receive antibiotics there (pediatric department) for several days. Because she cannot get chemo during an infection, the transplant will have to be deferred.
This is unfortunate for two reasons. One, the in-between period after Paris and before the transplant has been difficult emotionally for Timmi; dragging it out will not do her much good in that department. In addition, Timmi has been feeling cancer pains again recently, which is a sign that things are again going in the wrong direction. While she never achieved full remission this time around, we had hoped that she would start the transplant process with as few cancer cells as possible in her body. The delay in commencing treatment just gives the existing cells that much more time to be fruitful and multiply.
I will write again when I know the revised schedule. Until then, Shavua Tov* to you all.
Love, S.
*Shavua Tov – A good week (a greeting for the day after the Sabbath).
December 10, 1999
Yesterday Timmi was released from the hospital, after having been hospitalized since Saturday night with a fever, apparently due to a virus. As a result, the transplant was deferred, and we must call the hospital on Sunday to see if there is a bed in the bone marrow department. If there is, she will start her preparation then, rather than this past Sunday as was originally planned. If not, she will get the first bed available.
Her mood is rather brittle - she can easily go from up to down, from happy to annoyed and angry, and also (luckily) vice versa. As for me, I am quite tired, having run around all week, and with Chanukah on top of everything. Actually Chanukah, though a fair amount of work, has been fun; Monday evening we all brought the latkes I made to the hospital and had a party with Timmi.
If the transplant really does start next week, at least it will be when the kids are back in school, and for a pretty long stretch before the next holiday.
Shabbat Shalom to all -
Sara
December 15, 2004
Last Shabbat, the Torah portion that we read in the synagogue left us in the middle of the very dramatic story that ends the Book of Genesis – that of Joseph and his brothers. Joseph’s is a story of near-constant reversals of fortune. In one day, he went from his privileged life as Jacob’s favorite son to being sold by his brothers into slavery in a foreign land. In one hour, he went from his status the trusted servant of the wealthy and influential Potiphar to that of a prisoner, with no knowledge of how long he would remain in prison. He was taken from his prison to rule second only to Pharaoh and to marry the Egyptian High Priest’s daughter, ultimately to be reconciled with his brothers and reunited with his father.
Each of the future lives that Joseph might realistically have envisioned for himself at any one time – as a shepherd, as a slave, as a prisoner and as a stranger to his family - turned out not to be his ultimate fate. Though he was a visionary who could interpret dreams to predict the future, he surely couldn’t have mapped out in advance the turns that his life was to take. But Joseph learned to accept that very unpredictability. He learned, and repeated first to his fellow prisoners and then to Pharaoh himself, that all things come from God. That faith allowed him, in each new life in which he found himself, to refuse to give in to the despair that might have paralyzed another in his position. Instead, he strove to be the best person he could be in the circumstances in which he found himself, and to transform evil into good. Through that faith, he was able to redeem his own personal life - and to save the lives of his own family as well as those of countless others in Egypt and its surrounding counties. I am trying very hard to learn, remember and apply this lesson in my own life.
If someone had asked me when I was twenty what I believed was in store for me thirty years down the line, I probably would have answered quite confidently. Clearly, I would be living in a pleasant and stimulating city in the United States. I would have a family of two or at most three children, who would grow up to share my (and my husband’s) values and ideals. These children would already be either starting out in their own careers or advancing in their studies. I would have a high-powered job - most probably in a profession in which I was saving the world, or at least some part of it, for example as a public interest lawyer - and would have reached the apex of my career. Life would be orderly and fulfilling, and the traumas and sadness of my childhood and teenage years would be far behind me.
And here I am living in a pleasant, stimulating city – where it’s normal to see men in civilian clothes walking around with automatic weapons. Just now, I’m contemplating my third career change. I raised seven(!) children, none of whom (so far) started university studies before the age of 24. (OK, so Sheila started studying drumming at a music school when she was 20, but she didn’t go on with music.) To my great pride and pleasure, all of my children share Don’s and my values and ideals, and act on them. But not all of them grew up.
Everyone knows that life throws you curve balls. But some curve balls are harder than others, and more unexpected. Becoming an observant Jew after growing up Jewish but belonging to no religious stream, marrying an Israeli and moving to Jerusalem, changing my career plans, having the formerly unimaginable number of seven children, all those things weren’t in the original plan but were still in the realm of the conceivable. But having a child die of cancer at the age of 18 was - literally - unthinkable.
While Timmi was ill, our family’s life reflected in “micro” – on the day-to-day level – the dramatic reversals that I had experienced on the “macro” level in my own life. Like other families of children with cancer, we lived for years with unexpected developments and changes in plans, any of which could have meant life or death. A delay in starting any one of Timmi's many courses of treatment could have meant the treatment would come too late. Putting off a transplant isn't like putting off a trip to Paris. For six years, I lived with the almost-constant awareness that, as Arundhati Roy writes in one of my favorite books, The God of Small Things, things can change in a day.
Under these circumstances, I had pretty much two choices as a person of religious faith. One would have been to believe at every stage that things would go as we were planning right then. But this would have caused me constant anxiety and frustration at each of the many setbacks we experienced in the up-and-down course of Timmi’s battle with leukemia. Ultimately, it would have thrown me into despair as my expectations were shattered time and time again. When it means blindly believing that all will be well, faith is easily lost when real life trumps expectation.
My other option was to learn a deep kind of patience based on a different kind of faith. This kind of faith doesn’t make any assumptions about the course my life, and the lives of my loved ones, will take. Rather, it keeps me believing in a loving God even in a cruel world. It enables me to go on, even though I know that life holds absolutely no guarantees. It teaches me that I have and will continue to have the strength to do the right thing at any given moment, even when everything around me seems completely wrong. It helps me to try to be the best person I possibly can be even in what sometimes seems to be the worst of all possible worlds. This is the faith I've chosen, and I try my best to nurture and to live by it.
Joseph started out with a dream that made him so sure of his future that he had no trouble bragging about it to his envious brothers. That smug assurance brought about his original downfall. It was only when he learned to concentrate on doing God’s will in the present, and to leave the future in God’s hands, that Joseph’s dream was ultimately fulfilled, and that good came out of all the evil he had experienced in his life. I wish for all of us the wisdom and the serenity to do the same.
Well, as seems to have happened quite often since Timmi's relapse, the plans for her treatment have been interrupted. As I mentioned in my last update, Timmi was formally hospitalized in the bone marrow transplant department last Wednesday in anticipation of the transplant, although she has slept each night since then at home and was home for Shabbat as well. The plan was for her to start the preparatory chemotherapy tomorrow, and for the transplant itself to take place in about two weeks.
Unfortunately, a low fever that Timmi had been having on and off over the last few days, instead of going away as we had hoped, developed over Shabbat into a serious fever (39C). As a result, she went into the hospital tonight (Saturday night) and will probably receive antibiotics there (pediatric department) for several days. Because she cannot get chemo during an infection, the transplant will have to be deferred.
This is unfortunate for two reasons. One, the in-between period after Paris and before the transplant has been difficult emotionally for Timmi; dragging it out will not do her much good in that department. In addition, Timmi has been feeling cancer pains again recently, which is a sign that things are again going in the wrong direction. While she never achieved full remission this time around, we had hoped that she would start the transplant process with as few cancer cells as possible in her body. The delay in commencing treatment just gives the existing cells that much more time to be fruitful and multiply.
I will write again when I know the revised schedule. Until then, Shavua Tov* to you all.
Love, S.
*Shavua Tov – A good week (a greeting for the day after the Sabbath).
December 10, 1999
Yesterday Timmi was released from the hospital, after having been hospitalized since Saturday night with a fever, apparently due to a virus. As a result, the transplant was deferred, and we must call the hospital on Sunday to see if there is a bed in the bone marrow department. If there is, she will start her preparation then, rather than this past Sunday as was originally planned. If not, she will get the first bed available.
Her mood is rather brittle - she can easily go from up to down, from happy to annoyed and angry, and also (luckily) vice versa. As for me, I am quite tired, having run around all week, and with Chanukah on top of everything. Actually Chanukah, though a fair amount of work, has been fun; Monday evening we all brought the latkes I made to the hospital and had a party with Timmi.
If the transplant really does start next week, at least it will be when the kids are back in school, and for a pretty long stretch before the next holiday.
Shabbat Shalom to all -
Sara
December 15, 2004
Last Shabbat, the Torah portion that we read in the synagogue left us in the middle of the very dramatic story that ends the Book of Genesis – that of Joseph and his brothers. Joseph’s is a story of near-constant reversals of fortune. In one day, he went from his privileged life as Jacob’s favorite son to being sold by his brothers into slavery in a foreign land. In one hour, he went from his status the trusted servant of the wealthy and influential Potiphar to that of a prisoner, with no knowledge of how long he would remain in prison. He was taken from his prison to rule second only to Pharaoh and to marry the Egyptian High Priest’s daughter, ultimately to be reconciled with his brothers and reunited with his father.
Each of the future lives that Joseph might realistically have envisioned for himself at any one time – as a shepherd, as a slave, as a prisoner and as a stranger to his family - turned out not to be his ultimate fate. Though he was a visionary who could interpret dreams to predict the future, he surely couldn’t have mapped out in advance the turns that his life was to take. But Joseph learned to accept that very unpredictability. He learned, and repeated first to his fellow prisoners and then to Pharaoh himself, that all things come from God. That faith allowed him, in each new life in which he found himself, to refuse to give in to the despair that might have paralyzed another in his position. Instead, he strove to be the best person he could be in the circumstances in which he found himself, and to transform evil into good. Through that faith, he was able to redeem his own personal life - and to save the lives of his own family as well as those of countless others in Egypt and its surrounding counties. I am trying very hard to learn, remember and apply this lesson in my own life.
If someone had asked me when I was twenty what I believed was in store for me thirty years down the line, I probably would have answered quite confidently. Clearly, I would be living in a pleasant and stimulating city in the United States. I would have a family of two or at most three children, who would grow up to share my (and my husband’s) values and ideals. These children would already be either starting out in their own careers or advancing in their studies. I would have a high-powered job - most probably in a profession in which I was saving the world, or at least some part of it, for example as a public interest lawyer - and would have reached the apex of my career. Life would be orderly and fulfilling, and the traumas and sadness of my childhood and teenage years would be far behind me.
And here I am living in a pleasant, stimulating city – where it’s normal to see men in civilian clothes walking around with automatic weapons. Just now, I’m contemplating my third career change. I raised seven(!) children, none of whom (so far) started university studies before the age of 24. (OK, so Sheila started studying drumming at a music school when she was 20, but she didn’t go on with music.) To my great pride and pleasure, all of my children share Don’s and my values and ideals, and act on them. But not all of them grew up.
Everyone knows that life throws you curve balls. But some curve balls are harder than others, and more unexpected. Becoming an observant Jew after growing up Jewish but belonging to no religious stream, marrying an Israeli and moving to Jerusalem, changing my career plans, having the formerly unimaginable number of seven children, all those things weren’t in the original plan but were still in the realm of the conceivable. But having a child die of cancer at the age of 18 was - literally - unthinkable.
While Timmi was ill, our family’s life reflected in “micro” – on the day-to-day level – the dramatic reversals that I had experienced on the “macro” level in my own life. Like other families of children with cancer, we lived for years with unexpected developments and changes in plans, any of which could have meant life or death. A delay in starting any one of Timmi's many courses of treatment could have meant the treatment would come too late. Putting off a transplant isn't like putting off a trip to Paris. For six years, I lived with the almost-constant awareness that, as Arundhati Roy writes in one of my favorite books, The God of Small Things, things can change in a day.
Under these circumstances, I had pretty much two choices as a person of religious faith. One would have been to believe at every stage that things would go as we were planning right then. But this would have caused me constant anxiety and frustration at each of the many setbacks we experienced in the up-and-down course of Timmi’s battle with leukemia. Ultimately, it would have thrown me into despair as my expectations were shattered time and time again. When it means blindly believing that all will be well, faith is easily lost when real life trumps expectation.
My other option was to learn a deep kind of patience based on a different kind of faith. This kind of faith doesn’t make any assumptions about the course my life, and the lives of my loved ones, will take. Rather, it keeps me believing in a loving God even in a cruel world. It enables me to go on, even though I know that life holds absolutely no guarantees. It teaches me that I have and will continue to have the strength to do the right thing at any given moment, even when everything around me seems completely wrong. It helps me to try to be the best person I possibly can be even in what sometimes seems to be the worst of all possible worlds. This is the faith I've chosen, and I try my best to nurture and to live by it.
Joseph started out with a dream that made him so sure of his future that he had no trouble bragging about it to his envious brothers. That smug assurance brought about his original downfall. It was only when he learned to concentrate on doing God’s will in the present, and to leave the future in God’s hands, that Joseph’s dream was ultimately fulfilled, and that good came out of all the evil he had experienced in his life. I wish for all of us the wisdom and the serenity to do the same.
Monday, December 06, 2004
The Bare Necessities: Food
December 6, 2004
This post is a continuation of the previous one, "Paris," in which I descibed Timmi's and my trip to Paris five years ago.
Tonight we’re taking Aimee and Danny out to dinner. This is part of a revolutionary new system that we’ve very recently adopted – regular meals. OK, so it’s not revolutionary, but it is a re-normalization of a very important part of our family's life, a part that had fallen victim to our chaotic lifestyle when Timmi was ill, and to Don’s and my emotional exhaustion after she died. It’s one more example of our having to work hard to get to a place that most families take for granted.
Food, as everyone knows, is more than just a bare necessity. Eating can be one of life’s true pleasures, or it can be a source of tension or obsession. How we eat together also has a great deal to do with a family’s dynamics, and with the various relationships and interrelationships among its members. I was always proud that we made sure to have a family dinner every night. I’ve heard that the members of two-career families often eat separately, each according to a seldom-overlapping schedule. But I love eating with my husband and children. As a mother, especially, eating with my children gives me the biological satisfaction of seeing nourishment go into their bodies, and the deep happiness of spending enjoyable time together.
One of Timmi’s symptoms when her cancer first surfaced was a loss of appetite, and she started getting thinner and thinner. This was especially striking because Timmi – like all my children – had loved to eat. As with her other symptoms, we couldn’t figure it out. Because her Bat Mitzva was coming up, it was easy to think that she’d stopped eating out of worry or nervousness. Many people told me stories of other girls who at the age of eleven and a half had stopped eating or suffered all kinds of inexplicable symptoms, which miraculously disappeared after their Bat Mitzva ceremony and celebration.
A scarier possibility was an eating disorder. When Timmi was first hospitalized for tests, doctors and nurses kept asking her about her eating habits. One of them asked her if she thought she was fat. She answered, “Are you kidding? Look at me! And you might as well accept it – No, I am NOT anorexic.”
As it turned out, her bone marrow was stuffed solid with leukemia cells, and the resulting anemia was what caused her appetite to fade away. And that, of course, was only the beginning.
During the treatment for Timmi’s first bout with cancer, and then again after she relapsed, food became a source of near-constant worry and tension. Chemotherapy, radiation and the effects of her bone marrow transplant made her unable to eat for much of the time. Things lost their taste, or tasted different, or hurt her mouth to eat. Just when she could have used any physical comfort she could get, food lost its pleasure for her.
We set about trying to get Timmi to eat any way we could. Hospital food was, of course, out of the question; it didn't appeal to her in the least. We ran all over the hospital – and the city! – buying food that we thought might tempt her or that she felt she wanted. More often than not, she would take two bites and reject the rest. It didn’t taste the way she had fantasized it tasting, or she just wasn't hungry enough to make the effort. She continued wasting away, and there was nothing we could do about it.
(There were, of course, those wonderful times during remissions, when Timmi could again taste and appreciate food. For me, few pleasures matched watching her eat with appetite and enjoyment. The restaurants we visited in Paris were every bit as central a feature of the trip as the city’s museums, monuments, parks and cultural events. She especially loved those chestnuts that sidewalk vendors there wrap up in a paper cone and serve hot. And just as I loved feeding her and watching her eat, she loved sharing the bounty by feeding pigeons and other animals in the Paris streets. I have several pictures of her, for example, sitting outside the Notre Dame cathedral with birds perched along both her arms, on her lap and on her head, where she had pretty much invited them by scattering bread and other goodies for them.)
Our food troubles didn’t stop at Timmi. Due to the demands of her care, the other children’s needs and my job, I was unable to cook for that entire first year. We hired women to take the kids in the afternoon and to cook dinner, and members of our religious community cooked us nearly all of our Shabbat meals. After a while, the children started complaining that they didn’t like the food in the house any more. So I constantly worried about getting food not just into Timmi, but into the other children as well. And as for myself – well, I gained about 16 kilograms (35 pounds) that year, from grabbing meals here and there when I could, from eating out of anxiety or depression, from eating the sweets and snacks people brought Timmi and she could barely look at, and from hundreds of hours sitting on my behind in the hospital.
After a year of no cooking, I lost my love for it. Cooking became a chore and a burden, and meals at home became simpler and less creative. But at that point there was still some stability for the children. They didn’t complain about our meals because we did manage to have a family dinner most evenings, and anyway children can happily eat pasta or potatoes every night. The main thing was that Mama made it. So, as time went on and Timmi’s remission held, we regained a certain equilibrium as far as food and meals went.
After Timmi died, I lost what balance had remained in my life, and cooking, like most other non-emergency activities, fell by the wayside. Don was also emotionally squeezed out. So we started bringing home bagels, ordering pizza or Chinese, or scraping together fast meals from the freezer. We tried splitting responsibility for cooking into his days and my days, but our lack of energy for the task meant that very little got cooked from fresh or whole ingredients. Don and I developed dietary limitations, and the children adopted others (Elaine became a vegan for a while), so that between these limitations and the children’s differing tastes it became almost impossible to serve one meal that everyone could and would eat. As time went on and the children became busier with their own schedule, we cooked fewer and fewer fresh meals. (Shabbat saved us from total abdication - we continued always to honor the Sabbath with hearty meals.)
In a sense, we were repeating what Timmi had gone through. Can’t eat this, won’t eat that, what I want isn’t available without going to a lot of trouble, and I don’t have the energy to take the trouble…
As things got worse over the past year – at least from the point of view of home-cooked meals – Danny and Aimee reacted by absorbing our home’s culinary chaos into their own lives. Most nights, Aimee would stay out with her friends and would eat either nothing or something fast but not particularly healthful. Danny’s eating habits also became increasingly irregular; he would sometimes go for almost 24 hours without eating at all or eating nothing but plain bread. Needless to say, this didn't do much for his emotional or physical state. Explanations were useless, and more than once he told me flat out: “Mom, if I hear another word about protein and vitamins, I swear I’ll go nuts!”
Recently, we brought up food, eating habits and mealtimes with the parenting consultant we’ve been seeing. It was clear to both Don and me that things had to change. We missed having family dinners, and for that matter nutritious meals. We quickly decided to reinstate dinner together as a regular and reliable part of our family life, whether or not everyone is home to eat it; it is worth cooking for “only” two or three people. And once we gave meals together a high priority, we were able to think of ways to accommodate everyone’s dietary needs and preferences, involve Danny and Aimee as active partners in the process, and make eating into a fun activity once again.
Now we have a schedule that really seems to work; it’s been in place now for about two and a half weeks, and I hope it continues to go smoothly. On Sunday, Don works late and I cook for myself and the two children who live at home. Monday is restaurant night, and we take them out to an inexpensive place (they alternate choosing the restaurant). On Tuesday, Aimee plans and cooks diner. Wednesdays, Don and Danny plan and cook together, if Danny has no other plans for the evening. Thursdays we improvise, and I cook for Shabbat – as I've always done – on Friday.
Preparing meals is very routine for most people, and you may be wondering why I’ve spent all this space on the subject. The answer is that I've found the subject to be absolutely crucial. Our new dinner routine has brought our family closer together, just as the old lack of routine was driving us apart. Aimee now comes home for dinner most nights, and Danny has begun to eat a more balanced diet – both at dinner and at fairly regular intervals during the day. He’s even willing to listen when I speak to him about nutrition. The four of us are all pulling together, and enjoying each other’s company in the process. When our older daughters drop by at dinnertime, they find both good food and good company.
In this small (or perhaps not so small) part of our lives, I believe, our family has taken one more step in our journey toward healing. Now, when I think of feeding my children, I feel far less of the frustration and failure that I felt first when I couldn’t feed Timmi at all and then when I couldn’t seem to manage to feed my other children properly. Now, I feel far more strongly an echo of the joy I felt in Paris, as I watched Timmi munch happily on warm chestnuts and share her pleasure in being alive with the other living creatures that she loved to feed.
This post is a continuation of the previous one, "Paris," in which I descibed Timmi's and my trip to Paris five years ago.
Tonight we’re taking Aimee and Danny out to dinner. This is part of a revolutionary new system that we’ve very recently adopted – regular meals. OK, so it’s not revolutionary, but it is a re-normalization of a very important part of our family's life, a part that had fallen victim to our chaotic lifestyle when Timmi was ill, and to Don’s and my emotional exhaustion after she died. It’s one more example of our having to work hard to get to a place that most families take for granted.
Food, as everyone knows, is more than just a bare necessity. Eating can be one of life’s true pleasures, or it can be a source of tension or obsession. How we eat together also has a great deal to do with a family’s dynamics, and with the various relationships and interrelationships among its members. I was always proud that we made sure to have a family dinner every night. I’ve heard that the members of two-career families often eat separately, each according to a seldom-overlapping schedule. But I love eating with my husband and children. As a mother, especially, eating with my children gives me the biological satisfaction of seeing nourishment go into their bodies, and the deep happiness of spending enjoyable time together.
One of Timmi’s symptoms when her cancer first surfaced was a loss of appetite, and she started getting thinner and thinner. This was especially striking because Timmi – like all my children – had loved to eat. As with her other symptoms, we couldn’t figure it out. Because her Bat Mitzva was coming up, it was easy to think that she’d stopped eating out of worry or nervousness. Many people told me stories of other girls who at the age of eleven and a half had stopped eating or suffered all kinds of inexplicable symptoms, which miraculously disappeared after their Bat Mitzva ceremony and celebration.
A scarier possibility was an eating disorder. When Timmi was first hospitalized for tests, doctors and nurses kept asking her about her eating habits. One of them asked her if she thought she was fat. She answered, “Are you kidding? Look at me! And you might as well accept it – No, I am NOT anorexic.”
As it turned out, her bone marrow was stuffed solid with leukemia cells, and the resulting anemia was what caused her appetite to fade away. And that, of course, was only the beginning.
During the treatment for Timmi’s first bout with cancer, and then again after she relapsed, food became a source of near-constant worry and tension. Chemotherapy, radiation and the effects of her bone marrow transplant made her unable to eat for much of the time. Things lost their taste, or tasted different, or hurt her mouth to eat. Just when she could have used any physical comfort she could get, food lost its pleasure for her.
We set about trying to get Timmi to eat any way we could. Hospital food was, of course, out of the question; it didn't appeal to her in the least. We ran all over the hospital – and the city! – buying food that we thought might tempt her or that she felt she wanted. More often than not, she would take two bites and reject the rest. It didn’t taste the way she had fantasized it tasting, or she just wasn't hungry enough to make the effort. She continued wasting away, and there was nothing we could do about it.
(There were, of course, those wonderful times during remissions, when Timmi could again taste and appreciate food. For me, few pleasures matched watching her eat with appetite and enjoyment. The restaurants we visited in Paris were every bit as central a feature of the trip as the city’s museums, monuments, parks and cultural events. She especially loved those chestnuts that sidewalk vendors there wrap up in a paper cone and serve hot. And just as I loved feeding her and watching her eat, she loved sharing the bounty by feeding pigeons and other animals in the Paris streets. I have several pictures of her, for example, sitting outside the Notre Dame cathedral with birds perched along both her arms, on her lap and on her head, where she had pretty much invited them by scattering bread and other goodies for them.)
Our food troubles didn’t stop at Timmi. Due to the demands of her care, the other children’s needs and my job, I was unable to cook for that entire first year. We hired women to take the kids in the afternoon and to cook dinner, and members of our religious community cooked us nearly all of our Shabbat meals. After a while, the children started complaining that they didn’t like the food in the house any more. So I constantly worried about getting food not just into Timmi, but into the other children as well. And as for myself – well, I gained about 16 kilograms (35 pounds) that year, from grabbing meals here and there when I could, from eating out of anxiety or depression, from eating the sweets and snacks people brought Timmi and she could barely look at, and from hundreds of hours sitting on my behind in the hospital.
After a year of no cooking, I lost my love for it. Cooking became a chore and a burden, and meals at home became simpler and less creative. But at that point there was still some stability for the children. They didn’t complain about our meals because we did manage to have a family dinner most evenings, and anyway children can happily eat pasta or potatoes every night. The main thing was that Mama made it. So, as time went on and Timmi’s remission held, we regained a certain equilibrium as far as food and meals went.
After Timmi died, I lost what balance had remained in my life, and cooking, like most other non-emergency activities, fell by the wayside. Don was also emotionally squeezed out. So we started bringing home bagels, ordering pizza or Chinese, or scraping together fast meals from the freezer. We tried splitting responsibility for cooking into his days and my days, but our lack of energy for the task meant that very little got cooked from fresh or whole ingredients. Don and I developed dietary limitations, and the children adopted others (Elaine became a vegan for a while), so that between these limitations and the children’s differing tastes it became almost impossible to serve one meal that everyone could and would eat. As time went on and the children became busier with their own schedule, we cooked fewer and fewer fresh meals. (Shabbat saved us from total abdication - we continued always to honor the Sabbath with hearty meals.)
In a sense, we were repeating what Timmi had gone through. Can’t eat this, won’t eat that, what I want isn’t available without going to a lot of trouble, and I don’t have the energy to take the trouble…
As things got worse over the past year – at least from the point of view of home-cooked meals – Danny and Aimee reacted by absorbing our home’s culinary chaos into their own lives. Most nights, Aimee would stay out with her friends and would eat either nothing or something fast but not particularly healthful. Danny’s eating habits also became increasingly irregular; he would sometimes go for almost 24 hours without eating at all or eating nothing but plain bread. Needless to say, this didn't do much for his emotional or physical state. Explanations were useless, and more than once he told me flat out: “Mom, if I hear another word about protein and vitamins, I swear I’ll go nuts!”
Recently, we brought up food, eating habits and mealtimes with the parenting consultant we’ve been seeing. It was clear to both Don and me that things had to change. We missed having family dinners, and for that matter nutritious meals. We quickly decided to reinstate dinner together as a regular and reliable part of our family life, whether or not everyone is home to eat it; it is worth cooking for “only” two or three people. And once we gave meals together a high priority, we were able to think of ways to accommodate everyone’s dietary needs and preferences, involve Danny and Aimee as active partners in the process, and make eating into a fun activity once again.
Now we have a schedule that really seems to work; it’s been in place now for about two and a half weeks, and I hope it continues to go smoothly. On Sunday, Don works late and I cook for myself and the two children who live at home. Monday is restaurant night, and we take them out to an inexpensive place (they alternate choosing the restaurant). On Tuesday, Aimee plans and cooks diner. Wednesdays, Don and Danny plan and cook together, if Danny has no other plans for the evening. Thursdays we improvise, and I cook for Shabbat – as I've always done – on Friday.
Preparing meals is very routine for most people, and you may be wondering why I’ve spent all this space on the subject. The answer is that I've found the subject to be absolutely crucial. Our new dinner routine has brought our family closer together, just as the old lack of routine was driving us apart. Aimee now comes home for dinner most nights, and Danny has begun to eat a more balanced diet – both at dinner and at fairly regular intervals during the day. He’s even willing to listen when I speak to him about nutrition. The four of us are all pulling together, and enjoying each other’s company in the process. When our older daughters drop by at dinnertime, they find both good food and good company.
In this small (or perhaps not so small) part of our lives, I believe, our family has taken one more step in our journey toward healing. Now, when I think of feeding my children, I feel far less of the frustration and failure that I felt first when I couldn’t feed Timmi at all and then when I couldn’t seem to manage to feed my other children properly. Now, I feel far more strongly an echo of the joy I felt in Paris, as I watched Timmi munch happily on warm chestnuts and share her pleasure in being alive with the other living creatures that she loved to feed.
Wednesday, December 01, 2004
Paris
December 1, 1999
Here it is, as promised, the full scoop and lowdown on Timmi's and my trip to Paris. I can write this for two reasons: (1) Timmi will be sleeping at home for the first few nights of her hospitalization, including tonight, and (2) I sprained my ankle so I can't run around doing anything else.
As I mentioned to some of you in synagogue, Timmi had a terrific time and the trip did for her what we had hoped - she was very active and so came back stronger physically and emotionally in good shape, with lots of good memories and plans for future trips. The weather was quite bad - very cold, and cloudy all the time (I think we saw a half hour total of sun during the whole trip) but there's so much to do indoors in Paris that it didn't matter. As a general rule, we took cabs to our first destination, but as cabs can practically not be hailed on the street in Paris, we got around the rest of the time by Metro. Timmi at first found the steps hard to negotiate, but eventually the effort strengthened her legs so that by the end she could take several trains a day.
The day we arrived we had to get organized, so the most we could do was go to a restaurant (meat). Nothing to write home about, but an outing, and afterwards we walked a bit around the neighborhood of the restaurant. By the way, we had been seated for all of five minutes when who walked in but Moshe K.! Pretty small world.
The next day, Thursday, we went to the Picasso Museum, which is located in one of the two Jewish areas of Paris. Timmi found it fascinating. By the way, as a general comment she is the best possible travel companion, being interested in absolutely everything and having interesting things to say about all of it. After the museum we went to lunch in a very nice dairy restaurant on the rue des Rosiers. Altogether Timmi's appetite improved in Paris, due probably both to her improved mood and to her increased physical activity. We then went all the way up the Eiffel Tower, which was fun but freezing! We then went back for a quiet evening at the apartment of my high school friend Laurette, with whom we stayed.
Friday we had to prepare for Shabbat so couldn't do much, so we went to see the outside of the Louvre, ate roasted chestnuts and walked through the Tuileries to the obelisk at Place de la Concorde. We then had a lovely Kabbalat Shabbat* with Laurette and her family. Timmi and I sang most of Kabbalat Shabbat and her kids were quite fascinated, never having heard anything like it before.
Shabbat was lazy - we tried walking outside but it was too cold so we just rested (that's what it's for, after all).
Sunday we drove with Laurette and her family to Versailles, and saw the palace inside and out. Despite the sub-freezing temperature we took a mini-train ride around the gardens as well. This was the only part of the trip during which Timmi used the wheelchair we brought, because the palace is simply so large. She loved it, of course. Afterwards she and I went to an experimental dance performance in a very small theater. The first dance was a bit too depressing for us, but the second was fun, being based on childhood games.
Mondays almost all of the museums in Paris are closed, and besides we were both quite tired, so all we did during the day was go to Notre Dame, and out for lunch (again the dairy place on the rue des Rosiers). It was the first time Timmi had ever been in a church, and she found it very beautiful. She was very disappointed that she couldn't climb up the three-hundred-and-some steps to the tower where one can see the gargoyles up close, but we put that on the list of things to do next time. That evening we went to another, somewhat more established experimental dance theater. What can I say? We've both decided we have had enough experimental dance now to last us at least a good year or two.
On Tuesday we went to the Museum of Music (Veronica, bless your heart for having told us about it), where one can see a fascinating collection of old and modern musical instruments, and hear them in great music on headphones. This was really great! After the museum we went to Kookai and got Timmi several items of very fashionable clothes, many of which were on sale, and went out to dinner (again a meat restaurant and nothing special, but pretty nice).
Wednesday morning we went to the Doll Museum, then to a different dairy restaurant in the 5th arrondissement (also very good), and then to the Musee d'Orsay which, like everything else, Timmi loved. We didn't get to see all of the museum so this also went onto our "next trip" list. That evening Laurette drove us around Paris by night - the bridges lit up on the Seine, various monuments lit up, the Champs d'Elysees with every other tree wrapped up in white like a Christmas package (I'm not joking) and altogether the Christmas lights, which of course were new to Timmi. We also drove all around Montmartre and to the Sacre Coeur.
Thursday we flew back home. I must add that both our flights were exceptionally smooth, and the El Al attendants very nice.
As I said, Timmi expects to spend her time during the transplant process planning the next trip, back to Paris and to London and to Italy and and and.....
If you've gotten this far, and even if you haven't, I wish all of you a very happy Chanukah.
Love, S.
* Kabbalat Shabbat – Friday night prayers welcoming the Sabbath.
December 1, 2004
What can I say about that trip to Paris? I’m extraordinarily grateful that I was able to do it with her. There are so many things to say about that trip, and so many themes connected with it – fun, food, clothing, art and beauty, Timmi’s plans for the future…
But the description of the trip is long enough so that I won’t wear out your patience by adding my reflections today. Maybe in the next few days. But for me, for the moment, the memories stand by themselves, and I want – just for now – to simply allow myself to remember, and flow with the many and mixed feelings with which that amazing week has left me.
Here it is, as promised, the full scoop and lowdown on Timmi's and my trip to Paris. I can write this for two reasons: (1) Timmi will be sleeping at home for the first few nights of her hospitalization, including tonight, and (2) I sprained my ankle so I can't run around doing anything else.
As I mentioned to some of you in synagogue, Timmi had a terrific time and the trip did for her what we had hoped - she was very active and so came back stronger physically and emotionally in good shape, with lots of good memories and plans for future trips. The weather was quite bad - very cold, and cloudy all the time (I think we saw a half hour total of sun during the whole trip) but there's so much to do indoors in Paris that it didn't matter. As a general rule, we took cabs to our first destination, but as cabs can practically not be hailed on the street in Paris, we got around the rest of the time by Metro. Timmi at first found the steps hard to negotiate, but eventually the effort strengthened her legs so that by the end she could take several trains a day.
The day we arrived we had to get organized, so the most we could do was go to a restaurant (meat). Nothing to write home about, but an outing, and afterwards we walked a bit around the neighborhood of the restaurant. By the way, we had been seated for all of five minutes when who walked in but Moshe K.! Pretty small world.
The next day, Thursday, we went to the Picasso Museum, which is located in one of the two Jewish areas of Paris. Timmi found it fascinating. By the way, as a general comment she is the best possible travel companion, being interested in absolutely everything and having interesting things to say about all of it. After the museum we went to lunch in a very nice dairy restaurant on the rue des Rosiers. Altogether Timmi's appetite improved in Paris, due probably both to her improved mood and to her increased physical activity. We then went all the way up the Eiffel Tower, which was fun but freezing! We then went back for a quiet evening at the apartment of my high school friend Laurette, with whom we stayed.
Friday we had to prepare for Shabbat so couldn't do much, so we went to see the outside of the Louvre, ate roasted chestnuts and walked through the Tuileries to the obelisk at Place de la Concorde. We then had a lovely Kabbalat Shabbat* with Laurette and her family. Timmi and I sang most of Kabbalat Shabbat and her kids were quite fascinated, never having heard anything like it before.
Shabbat was lazy - we tried walking outside but it was too cold so we just rested (that's what it's for, after all).
Sunday we drove with Laurette and her family to Versailles, and saw the palace inside and out. Despite the sub-freezing temperature we took a mini-train ride around the gardens as well. This was the only part of the trip during which Timmi used the wheelchair we brought, because the palace is simply so large. She loved it, of course. Afterwards she and I went to an experimental dance performance in a very small theater. The first dance was a bit too depressing for us, but the second was fun, being based on childhood games.
Mondays almost all of the museums in Paris are closed, and besides we were both quite tired, so all we did during the day was go to Notre Dame, and out for lunch (again the dairy place on the rue des Rosiers). It was the first time Timmi had ever been in a church, and she found it very beautiful. She was very disappointed that she couldn't climb up the three-hundred-and-some steps to the tower where one can see the gargoyles up close, but we put that on the list of things to do next time. That evening we went to another, somewhat more established experimental dance theater. What can I say? We've both decided we have had enough experimental dance now to last us at least a good year or two.
On Tuesday we went to the Museum of Music (Veronica, bless your heart for having told us about it), where one can see a fascinating collection of old and modern musical instruments, and hear them in great music on headphones. This was really great! After the museum we went to Kookai and got Timmi several items of very fashionable clothes, many of which were on sale, and went out to dinner (again a meat restaurant and nothing special, but pretty nice).
Wednesday morning we went to the Doll Museum, then to a different dairy restaurant in the 5th arrondissement (also very good), and then to the Musee d'Orsay which, like everything else, Timmi loved. We didn't get to see all of the museum so this also went onto our "next trip" list. That evening Laurette drove us around Paris by night - the bridges lit up on the Seine, various monuments lit up, the Champs d'Elysees with every other tree wrapped up in white like a Christmas package (I'm not joking) and altogether the Christmas lights, which of course were new to Timmi. We also drove all around Montmartre and to the Sacre Coeur.
Thursday we flew back home. I must add that both our flights were exceptionally smooth, and the El Al attendants very nice.
As I said, Timmi expects to spend her time during the transplant process planning the next trip, back to Paris and to London and to Italy and and and.....
If you've gotten this far, and even if you haven't, I wish all of you a very happy Chanukah.
Love, S.
* Kabbalat Shabbat – Friday night prayers welcoming the Sabbath.
December 1, 2004
What can I say about that trip to Paris? I’m extraordinarily grateful that I was able to do it with her. There are so many things to say about that trip, and so many themes connected with it – fun, food, clothing, art and beauty, Timmi’s plans for the future…
But the description of the trip is long enough so that I won’t wear out your patience by adding my reflections today. Maybe in the next few days. But for me, for the moment, the memories stand by themselves, and I want – just for now – to simply allow myself to remember, and flow with the many and mixed feelings with which that amazing week has left me.
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