March 12, 2000
A great deal has happened since I sent my last update, most of it not so great.
Timmi was hospitalized last Shabbat morning with a fever, and has been in the hospital since, except for "leave" this Shabbat (she went back immediately Motzei Shabbat*). She has, it turns out, quite a serious bacterial infection in her blood. In addition, for quite some time she has been having stomach pain, nausea or vomiting when she eats or drinks; for the past week or more she has been able to keep down only very small amounts of neutral food, such as bread. A gastroentoscopy that was performed on Thursday showed some kind of inflammation in two places in her stomach, and biopsies were taken to determine if they are bacterial, viral or possibly GVH-related. And speaking of GVH, it is unclear whether she has it any more, as the rash she developed after taking the interferon has almost disappeared. This means that the interferon treatment was a failure; the next step, when she is well enough, will be to start giving her new T-cells from Ashira in an attempt to reignite the GVH. So the inflammation that we wanted has gone away, and now she is suffering from two unwanted inflammations.
Counterintuitively, Timmi's mood took a serious turn for the worse when she came home for Shabbat, and she spent most of Shabbat angry or depressed. It is very hard for her to come back and see life going on more or less normally (while life in our house is certainly not normal right now, the other children do have lives that they lead), when it is so hard for her to participate.
Paradoxically, though, during the past two weeks I personally have been coping quite a bit better than had been the case before that. I have found that, at least in our present situation, the most helpful thing that I can do for myself, as well as for Timmi, is to recognize my own helplessness in the face of these terrible things, and accept the limitations on my ability to change much. What I can do, right now, is be with Timmi, let her know I'm there and give her the message that I know where she is, and love her. I do this most effectively, it turns out, when I recognize that that is really all I can do at that particular moment. It is not easy, as a parent, to recognize and accept these limits, especially when it comes to Timmi's emotional state. Rejecting the limits, though, not only makes me feel guilty for not doing the "more" or the "better" that "must" be out there to do, but it also makes me less helpful to Timmi. So I have been working very hard on this, as difficult as it is.
Shavua Tov* to all.
Love,
Sara
*Saturday night.
**A good week.
March 23, 2005
I just got back from the public reading in synagogue of Megillat Esther (the Book of Esther) that is a central part of Jews’ observance of Purim (see my last post). In many respects, the Purim story is one of the interrelationship between the limitations that we humans face in determining our own fate, on the one hand, and faith and courage – the two means that we do have in our struggle against the despair that can result from that helplessness, on the other.
In the Purim story, the Jews of the ancient Persian Empire are faced with annihilation at the hands of Haman, King Ahasuerus’s favored adviser, who formulates his genocidal plan in response to the anger and hatred that he feels toward one Jew – Mordechai, who refuses to bow down to him. The king, an absolute monarch who makes decisions according to how his fancy strikes him at any particular moment, sees nothing amiss or even unusual, it seems, in ordering the destruction of an entire people on the basis of one man’s counsel (with a large bribe thrown into the bargain). Haman decides which day the massacre is to take place by casting lots – Purim – and the lot falls on the 14th day of Adar, the last month in the Jewish calendar.
In such an arbitrary world, it’s easy to give in to despair. And indeed, that is just what the Jews do upon hearing of the king’s decree – mourn their fate in advance, donning sackcloth and sitting in ashes. This is Mordechai’s first response as well – he even sits in mourning at the palace gate, where sackcloth and ashes are forbidden. But as a man of faith, Mordechai does not allow despair to rule him. He sends a message to his cousin and adopted daughter, Ahasuerus's wife Queen Esther, telling her of Haman’s plan and Ahasuerus’s acquiescence, and asks that she intervene with the king. At first, Esther too is struck by a sense of futility; by coming to the king uninvited, she runs the risk of being executed. But she agrees, asking only that the Jews fast for her for three days before she enters the king’s chamber. Thanks to Mordechai’s and Esther’s faith and courage, the story ends happily; Esther’s mission is successful – the Jews are spared, and Haman and his cohorts receive their just punishment.
Sometimes our world seems as if it’s ruled by a king like Ahasuerus, with our fate determined by chance rather than by our own acts. We’d love to think that we have control over our lives – that our behavior will determine the course our lives will take, for good and for bad. And we do have a certain amount of control. “What goes around comes around” is not a completely empty slogan. Like Haman, evil people are sometimes undone by their own character; witness the ultimate fates of Hitler, Stalin, Pol Pot and other monsters like them. But for each such example there is a counter-example of a despot who caused untold harm to great numbers of people, but died peacefully of old age. In our private lives, too, each of us knows people who seem to get what they deserve – and others who definitely do not. Not all stories end like the Purim story, with evil punished and innocence rewarded.
My father once described the arbitrary nature of the world around him, as he saw it, in a poem:
Some angry angel
Bleared by Bach and still unfed
Jumped out of bed
Pulled on a sock and,
Glancing downwards,
Threw a rock
Which hit an earthbound peacock’s head.
The peacock fell.
The peacock’s yell,
Outraged by such treason,
Cried out to know why it
Out of millions
Should be hit
And instantly invented a reason.
How are we to understand the capriciousness of fortune? There are those who insist, as a theological certainly and regardless of a great deal of evidence to the contrary, that the pattern of each person’s life is determined in accordance with the laws of reward and punishment. The reward/punishment may be personal (the person herself deserves it), familial (the person is treated according to her parents’ or ancestors’ good or evil deeds) or national (what befalls a people depends on its members’ national morality). If things seem otherwise, it’s only because we can’t understand God’s plan. The problem with this approach is that it can lead to a smug disregard for the suffering of others who, after all, “get only what’s coming to them.” There are others, like my father, who accept only the evidence of their eyes and see life and destiny as completely arbitrary. This belief, though, can plunge a morally principled person into the depths of despair, as there seems to be no point in even trying to do the right thing.
Rasha v’tov lo (an evil person who prospers) and Tzaddik v’rah lo (a righteous person who suffers) is one of the oldest and most difficult of philosophical and theological questions, and I certainly cannot claim to have resolved it. What I do know is that as a person of faith, I refuse to accept either extreme position. If I believed that Timmi suffered and died because of her own or others’ transgressions, I would not be able to serve such a vengeful God. My faith would not survive such knowledge. But neither can I see her suffering and death as arbitrary and meaningless; this too would be devastating to me. And I’ve experienced too much of God’s goodness to believe that the universe just happened – as some kind of cosmic mistake – or that He created it and then left us entirely on our own, to fend for ourselves.
So I return to my question. In a world in which terrible things sometimes befall the innocent, and not all stories end like Esther’s, Mordechai’s and Haman’s, how do we face our vulnerability without either denying reality or letting it overwhelm us with despair? I believe that the answer comes back to faith and courage. Mordechai and Esther had faith in the possibility that their lives – and those of their people – were subject to a force beyond random events, to more than the momentary whims of a king. They had the courage to risk their lives on the basis of this faith – Mordechai as he continued to defy Haman and sit at the palace gates, and Esther as she entered the king’s inner chamber without having been summoned.
Esther and Mordechai succeeded in reversing the tide of capricious fortune that threatened to engulf the Jewish people of their time. But I believe that those two heroes’ faith and courage may serve as an example to us even when our story doesn’t end happily. We can call on our courage to help us face the frightening reality that we live in a world in which innocents can and do suffer, and in which even children can and do die. And faith can help us go on living, even in full awareness of our helplessness, without becoming either despondent or cynical. If life is to have meaning, I believe, we must reject both attitudes. Despondency may lead a person to feel – and act – as if there’s no point in doing anything, because all may be undone in a chance moment. Cynicism may cause a person to feel, and act, as if there’s no point in trying to live morally, because in a world without reward or punishment we might as well do whatever we please – even if it causes arbitrary and undeserved harm to others, thus perpetuating the cycle.
May all our stories end happily – and at those times when they don’t, may God bless us all with the faith and courage to continue living fearlessly and morally, even as we face the limits of our control over our own destinies.
Saturday, March 26, 2005
Wednesday, March 16, 2005
Everything and Its Opposite
February 28, 2000
Timmi had a difficult week last week, with the side effects of the medicine (interferon) she was taking to try to induce GVH making her feel physically weak, with frequent fever. She was also quite discouraged much of the time. On Thursday she had a scan, the results of which were inconclusive - it showed areas where there was "something" but it was difficult to tell if what showed up on the scan were tumors, results of her osteoporosis or the beginnings of GVH. My gut feeling is that it is all of the above. At any rate, we were encouraged by the possibility that the GVH was finally starting to appear, and Timmi's mood improved a bit with that news. It also seems that her pain level has been reduced, which could be attributed to the increased effectiveness of her anti-pain medication, but also might be seen as resulting from the GVH (i.e., her new immune system's functioning) attacking and shrinking the tumors that were causing the pain.
Today, she woke up with an intense rash all over her body. This, finally, is a clear sign of serious GVH, so it seems the interferon has indeed been working. The downside is that the rash is very itchy; we hope to be able to control the itching with a hydrocortisone cream, but if the GVH gets too intense she will have to be hospitalized in order to receive steroids intravenously. So, as we expected, the good news of the start of GVH comes with a great deal of anxiety over what and how much Timmi will suffer from the "cure" for her cancer, and how she will deal with the constant discomfort.
My own emotional state has been quite variable, with days that I cope and days that I feel as if I have lost the ability to enjoy myself, and days when just coping seems a Herculean task. I am very grateful for Don, who is in a somewhat better place than I am right now, and for the love I feel from my friends. But sometimes I get overwhelmed. Today, though, I'm functioning quite well, so I'm grateful for that and hope it will last. Also, Purim is coming, which means the best days of the year for me - Purim Spiel rehearsals!
Shavua Tov to all of you.
Love,
Sara
March 16, 2005
This past Shabbat was the first day of Adar II,* the month in which we Jews celebrate Purim. This holiday commemorates the deliverance of the Jews of the Persian empire from the genocidal destruction planned by the Persian king’s evil adviser, Haman, through the faith and courage of Queen Esther and her brother Mordechai. The story is told in the Book of Esther, which describes how Jews have ever since celebrated Purim, “the days on which the Jews were delivered from their enemies,” and Adar as “the month that was turned for them from sorrow into gladness and from mourning into a holiday.”
We celebrate Purim with a festive meal, gifts of food, charity to the poor, and generally by having a rowdy good time. But what most distinguishes Purim from other holidays, whether Jewish or other, is its focus on turning things around. Many Israeli schools, for example, celebrate the beginning of Adar as “Opposite Day” – in commemoration of the reversal of the Jews’ fortune, roles are reversed, with students teaching and teachers acting like kids. In just about every school in the country, children and teachers alike dress up in costumes – another way of being what you aren’t and, in a sense, of reversing reality. (I recently learned that in Abu Ghosh, an Arab town next to Jerusalem, even the Muslims and the Christians dress up and fool around!) One of my favorite parts of Purim is that every year I participate in our synagogue’s “Purim Spiel,” a traditional comic play or show in which we make fun of anything and everything, especially ourselves.
One of Purim’s profound meanings, for me, is its recognition that everything in this world contains the seed of its opposite. Just as the Persian Empire’s Jews’ disaster contained the germs of their deliverance – for in the end it was Haman’s own evil character that proved to be his undoing – so every situation holds within itself the reverse possibility. Even life, by definition, contains the certainty of eventual death; the main thing all living creatures have in common is that they are bound to die. Similarly, each human being is made up of many conflicting selves, and Purim is a time to explore these selves and bring them out into the light, if only for one day. (I, for example, love getting in touch with my “inner vamp” as part of my Purim performance, even though the other days of the year I dress and behave with the modesty that the Jewish religion requires.)
But this also means that good times, good situations and even good people may reverse course, and their darker aspects may emerge and even dominate. For me, the most striking occurence illustrating how great good and great evil may dwell side by side in the same person took place about ten years ago, on Purim. A doctor named Baruch Goldstein, who was known for his kindness, charity, and extraordinary efforts to help other Jews, took his military weapon, entered a mosque in the middle of prayers, and massacred 29 worshippers. Since then, Purim has had a bittersweet flavor for me.
In some ways, Timmi contained more contradictions than most. When she was a small girl, we used to call her “the little girl with the little curl right in the middle of her forehead” (because, of course, besides having lovely curly hair, “when she was good she was very, very good, but when she was bad she was horrid”). It was very easy for her to move from a bright, happy mood to anger or sadness. (Luckily for us, most of the time she sparkled with fun.) After she became ill, this natural tendency, which was harmless enough when she was small, intensified. At times, she would fall into black despair, and lash out at those with whom she shared the deepest love.
Timmi had always treasured her role as big sister (she was our fourth out of seven children), and enjoyed teaching her younger sisters and brother games, making things with them, and generally helping them in all kinds of ways. But during her illness there were many times when her pain or despair overcame her, and she directed her bitterness at Elaine, Aimee and Danny. This was heartbreaking for me and Don – there were times when Timmi seemed almost unrecognizable as herself. (I’ve been told that cancer, and certain treatments for cancer, sometimes do this to people.) These outbursts had a deep and lasting effect on the younger children, and many times Don and I had to explain to them that although it sometimes seemed as if their sister had turned into a stranger, the true Timmi was still there, still loved them, and would come back out again once her pain, or desperate mood, had passed.
Even Timmi’s physical being expressed these contradictions. She was an extremely active child, graceful and strong, and spent much of her time running, skipping, and dancing. And yet, from the age of four or so, that healthy, beautiful body contained hundreds, then thousands, then millions of malignant cells that took eight years to make themselves known, ultimately filling her bones and replacing her life-giving blood cells with the seeds of an early death.
But just as life always contains the germ of death, so death can sometimes give deeper meaning to life. Timmi’s death is without a doubt the worst thing that has ever happened to me, to Don and to our children. But even the intense suffering that we went through – and continue to experience at times – has created and nurtured aspects of ourselves that might otherwise never have been expressed as strongly or in the same way. Empathy has always been one of our family’s highest values, but now we possess experience and language that enable us to listen deeply to others’ suffering, to help them feel that they’re not alone, even sometimes to lighten their burden. For example, one of Aimee’s friends’ mother has been stricken with breast cancer, and Aimee has been able to listen and speak to her friend with a maturity far beyond her fifteen years. I am changing my career in the hope of helping strangers in that way. And I think that much of my other children’s passion for social activism also stems in part from the intense sensitivity to other people’s suffering that grew in them in response to Timmi’s illness and death.
So as Purim approaches, my awareness grows of the deep complexity of our lives. This world contains everything and its opposite, and each of its aspects bears within it a multitude of possibilities – as do we. And, as human beings created in God's image, we have the capacity to choose which parts of ourselves to develop in response to the extreme suffering – our own and other people’s – that is sometimes a tragic part of life. I pray us that God will grant us all the strength to draw on our own sorrow to ease the pain of others, and to learn from our own mourning to help other mourners find within themselves that very same strength.
*The Jewish calendar, which is strictly lunar, contains a second month of Adar every few years, to keep it in synch with the solar calendar.
Timmi had a difficult week last week, with the side effects of the medicine (interferon) she was taking to try to induce GVH making her feel physically weak, with frequent fever. She was also quite discouraged much of the time. On Thursday she had a scan, the results of which were inconclusive - it showed areas where there was "something" but it was difficult to tell if what showed up on the scan were tumors, results of her osteoporosis or the beginnings of GVH. My gut feeling is that it is all of the above. At any rate, we were encouraged by the possibility that the GVH was finally starting to appear, and Timmi's mood improved a bit with that news. It also seems that her pain level has been reduced, which could be attributed to the increased effectiveness of her anti-pain medication, but also might be seen as resulting from the GVH (i.e., her new immune system's functioning) attacking and shrinking the tumors that were causing the pain.
Today, she woke up with an intense rash all over her body. This, finally, is a clear sign of serious GVH, so it seems the interferon has indeed been working. The downside is that the rash is very itchy; we hope to be able to control the itching with a hydrocortisone cream, but if the GVH gets too intense she will have to be hospitalized in order to receive steroids intravenously. So, as we expected, the good news of the start of GVH comes with a great deal of anxiety over what and how much Timmi will suffer from the "cure" for her cancer, and how she will deal with the constant discomfort.
My own emotional state has been quite variable, with days that I cope and days that I feel as if I have lost the ability to enjoy myself, and days when just coping seems a Herculean task. I am very grateful for Don, who is in a somewhat better place than I am right now, and for the love I feel from my friends. But sometimes I get overwhelmed. Today, though, I'm functioning quite well, so I'm grateful for that and hope it will last. Also, Purim is coming, which means the best days of the year for me - Purim Spiel rehearsals!
Shavua Tov to all of you.
Love,
Sara
March 16, 2005
This past Shabbat was the first day of Adar II,* the month in which we Jews celebrate Purim. This holiday commemorates the deliverance of the Jews of the Persian empire from the genocidal destruction planned by the Persian king’s evil adviser, Haman, through the faith and courage of Queen Esther and her brother Mordechai. The story is told in the Book of Esther, which describes how Jews have ever since celebrated Purim, “the days on which the Jews were delivered from their enemies,” and Adar as “the month that was turned for them from sorrow into gladness and from mourning into a holiday.”
We celebrate Purim with a festive meal, gifts of food, charity to the poor, and generally by having a rowdy good time. But what most distinguishes Purim from other holidays, whether Jewish or other, is its focus on turning things around. Many Israeli schools, for example, celebrate the beginning of Adar as “Opposite Day” – in commemoration of the reversal of the Jews’ fortune, roles are reversed, with students teaching and teachers acting like kids. In just about every school in the country, children and teachers alike dress up in costumes – another way of being what you aren’t and, in a sense, of reversing reality. (I recently learned that in Abu Ghosh, an Arab town next to Jerusalem, even the Muslims and the Christians dress up and fool around!) One of my favorite parts of Purim is that every year I participate in our synagogue’s “Purim Spiel,” a traditional comic play or show in which we make fun of anything and everything, especially ourselves.
One of Purim’s profound meanings, for me, is its recognition that everything in this world contains the seed of its opposite. Just as the Persian Empire’s Jews’ disaster contained the germs of their deliverance – for in the end it was Haman’s own evil character that proved to be his undoing – so every situation holds within itself the reverse possibility. Even life, by definition, contains the certainty of eventual death; the main thing all living creatures have in common is that they are bound to die. Similarly, each human being is made up of many conflicting selves, and Purim is a time to explore these selves and bring them out into the light, if only for one day. (I, for example, love getting in touch with my “inner vamp” as part of my Purim performance, even though the other days of the year I dress and behave with the modesty that the Jewish religion requires.)
But this also means that good times, good situations and even good people may reverse course, and their darker aspects may emerge and even dominate. For me, the most striking occurence illustrating how great good and great evil may dwell side by side in the same person took place about ten years ago, on Purim. A doctor named Baruch Goldstein, who was known for his kindness, charity, and extraordinary efforts to help other Jews, took his military weapon, entered a mosque in the middle of prayers, and massacred 29 worshippers. Since then, Purim has had a bittersweet flavor for me.
In some ways, Timmi contained more contradictions than most. When she was a small girl, we used to call her “the little girl with the little curl right in the middle of her forehead” (because, of course, besides having lovely curly hair, “when she was good she was very, very good, but when she was bad she was horrid”). It was very easy for her to move from a bright, happy mood to anger or sadness. (Luckily for us, most of the time she sparkled with fun.) After she became ill, this natural tendency, which was harmless enough when she was small, intensified. At times, she would fall into black despair, and lash out at those with whom she shared the deepest love.
Timmi had always treasured her role as big sister (she was our fourth out of seven children), and enjoyed teaching her younger sisters and brother games, making things with them, and generally helping them in all kinds of ways. But during her illness there were many times when her pain or despair overcame her, and she directed her bitterness at Elaine, Aimee and Danny. This was heartbreaking for me and Don – there were times when Timmi seemed almost unrecognizable as herself. (I’ve been told that cancer, and certain treatments for cancer, sometimes do this to people.) These outbursts had a deep and lasting effect on the younger children, and many times Don and I had to explain to them that although it sometimes seemed as if their sister had turned into a stranger, the true Timmi was still there, still loved them, and would come back out again once her pain, or desperate mood, had passed.
Even Timmi’s physical being expressed these contradictions. She was an extremely active child, graceful and strong, and spent much of her time running, skipping, and dancing. And yet, from the age of four or so, that healthy, beautiful body contained hundreds, then thousands, then millions of malignant cells that took eight years to make themselves known, ultimately filling her bones and replacing her life-giving blood cells with the seeds of an early death.
But just as life always contains the germ of death, so death can sometimes give deeper meaning to life. Timmi’s death is without a doubt the worst thing that has ever happened to me, to Don and to our children. But even the intense suffering that we went through – and continue to experience at times – has created and nurtured aspects of ourselves that might otherwise never have been expressed as strongly or in the same way. Empathy has always been one of our family’s highest values, but now we possess experience and language that enable us to listen deeply to others’ suffering, to help them feel that they’re not alone, even sometimes to lighten their burden. For example, one of Aimee’s friends’ mother has been stricken with breast cancer, and Aimee has been able to listen and speak to her friend with a maturity far beyond her fifteen years. I am changing my career in the hope of helping strangers in that way. And I think that much of my other children’s passion for social activism also stems in part from the intense sensitivity to other people’s suffering that grew in them in response to Timmi’s illness and death.
So as Purim approaches, my awareness grows of the deep complexity of our lives. This world contains everything and its opposite, and each of its aspects bears within it a multitude of possibilities – as do we. And, as human beings created in God's image, we have the capacity to choose which parts of ourselves to develop in response to the extreme suffering – our own and other people’s – that is sometimes a tragic part of life. I pray us that God will grant us all the strength to draw on our own sorrow to ease the pain of others, and to learn from our own mourning to help other mourners find within themselves that very same strength.
*The Jewish calendar, which is strictly lunar, contains a second month of Adar every few years, to keep it in synch with the solar calendar.
Monday, March 07, 2005
The Bare Necessities: Work
February 17, 2000
During the last week, no signs of GVH appeared, and Timmi's pains got worse. Next week she will have a scan to see if the pains she is having are in fact from tumors, but because they are strongest in the places where she has historically had the largest tumors, we are assuming that that's what they are. Therefore, she has started injecting herself every day with interferon, which we hope will stimulate a GVH and attendant GVL (graft versus host and graft versus leukemia) effect. The results of a genetic test have indicated that her present immune system is indeed grafted from Shari’s, and that improves the possibility that the interferon will work. We certainly hope so. If there is no GVH in the next two weeks, she will start getting extra T-cells from Shari in a further attempt to induce the syndrome.
Timmi's mood markedly improved this past week, as well as my own ability to function. A psychologist once told me that in these situations people sometimes need "collapse days". I had a few of those over the last couple of weeks, but now feel like I'm coping again. My life is now slow and stressed - a few years ago, I wouldn't have believed that such a thing exists. I hope to be getting out for more professional work in the near future, and am again making sure to get enough exercise. Those are the things that most help me, so I hope to stay in the coping mode for a while at least. (I also never dreamed that I would ever see work as a kind of vacation!)
Shabbat Shalom to all.
Love,
Sara
March 3, 2005
Several days ago I took an exciting but scary decision. I decided definitely to go to New York this summer to start the MSW program to which I’ve been accepted, even though I still don’t know how I’ll finance the program past the first year. (I wrote about my hope to attend this program in “Plans,” October 2004, and “Waiting,” January 2005.) I made my decision thanks to the feedback and advice of literally everyone I spoke to about my dilemma whether to start the program without knowing I could finish it. Every single person around me – my friends, Don, my children – has told me that I should just go for it, and that the momentum of starting would carry me through. As Shari put it, if this is what I’m meant to do, God will make sure I manage to do it, one way or another. Although it’s hard to escape my fear that things won’t happen the way I hope they will, the chance of finally working at a profession with which I identify completely is too important to me to give up.
Since the age of three and a half, when I started nursery school, I was always part of a framework of either study (which is, after all, our work when we’re young) or a profession, or both. Having children didn’t change that. I had Lisa in the middle of my second year of law school, and was completely determined that parenting wouldn't come at the expense of work, and vice versa. I would do my homework and study for tests while nursing Lisa. Once, when Don was unavailable and we had no other childcare arrangement, I took her with me to class. I sat her on my desk, next to the door in case she needed to be taken out, and gave her a teddy bear to play with. (About half the students who came in past us said something like, “I wish I also had a teddy bear to play with!") This mix of mothering and studying led to some absurd and comic scenes: my six-hour Business Associations exam was the first time I’d gone for more than three hours without nursing Lisa, so there I sat, writing frantically about partnerships and corporations, while my body kept insisting in no uncertain terms that it was time to feed my baby. I left the exam soaked from my neck to my knees!
I went on living an intensely high-energy life, combining motherhood with work (I include study in my definition of work) outside my home; I gave birth to Sheila a week after finishing law school, and to Shari right after finishing my clerkship on the federal court of appeals. When we came to Israel a month later, I immediately entered an ”Ulpan” (a Hebrew language immersion program), after which I enrolled in a Masters program in Jewish law at Hebrew University; Timmi was born when I was one year into the Masters program. The next year, I began work as an intern at a law firm, and Elaine was born just as I completed the mandatory year and a half of internship. I started my career as a licensed attorney with five children up to the age of nine! After Aimee and then Danny were born, I moved from my high-pressure job at a private commercial law firm to a less stressful job with the government, but due to my relatively high position (as deputy legal adviser at a government ministry) I still worked full-time-plus.
All along, Don and I shared our domestic duties according to practical considerations – whoever was free did whatever was needed at the moment. And when Timmi first became ill, I continued working, because it was natural for Don and me to split between us what needed to be done to take care of her and of the other children.
Timmi's relapse was diagnosed shortly after I’d left the legal profession to study mediation. Under those circumstances, I couldn’t get a new regular job. I wanted to be more available for Timmi and my other children this time around, as a relapse is much scarier than a first-time cancer. Also, it was clear that even if I wanted a job outside my home, no one would hire the mother of a child with such a demanding illness. So I took occasional free-lance mediation work, mostly for divorcing couples. For the first time since I was three and a half, I found myself without a regular framework for work or study outside my home. It was a strange feeling, but I was so busy with Timmi and the other kids that I didn’t really have time to notice it much.
When Timmi died, the vacuum she left behind was harder to deal with than the frantic activity of even the most pressured periods in my life before then. All the energy that I managed to find within myself, first when I was parenting seven children while working at a demanding profession, then as a mother dealing with Timmi’s illness and its fallout for the rest of the family – all that energy just dried up. Almost everything I needed to do seemed totally overwhelming; at the same time, I didn’t know what to do with myself during the long, empty hours of the day. It was almost two years before I was able to return to a regular job, and a part-time one at that. (To this day, I haven't felt able to work a full day, and often when I return from work I don't seem to have the strength to do what needs to be done at home.)
Almost miraculously, though, whenever I've been involved in a mediation, I've discovered that elusive energy within myself. I find it fascinating and exciting to be allowed into the emotional lives of my clients and to help them solve their conflicts. Even before I was able to return to work at a regular job, no matter how hard things were at home (both during Timmi’s second illness and after her death) I was always able to leave my troubles outside the door and concetrate on the people sitting in the mediation room with me, and on my work with them. For the first time in my professional life, I was totally absorbed in work about which I felt passionate, and that passion energized me even when I had the strength for little other than what I barely needed to do to keep my family going.
It was a small and simple step from mediating divorces to the desire to work with people to help keep their families whole. And so I began dreaming of retraining as a social worker and becoming a family therapist, finally applying to the MSW program that I'll start, God willing, this coming June. But the program I’m entering is very demanding. It will mean being away from my family for three summers in a row, each time squeezing a full semester’s course load into six weeks or so, with all of a semester’s homework to do and papers to write. It worries me - what if, however much I want to do this, I really don't have the energy to handle such an intensive schedule?
But I know what Timmi would have said. She would have told me to take the risk and go for it, just as she insisted on pushing herself to her own limits despite her illness. She would have reminded me that perhaps the only way to find some meaning in what we all went through together is for each of us to use what our experience taught us to try and ease other people's suffering, where we can. Elaine does this by working with disadvantaged Jewish and Arab children, and by helping Israeli and Palestinian young women to work together toward a vision of peaceful coexistence. Lisa does this through her work at the Rape Crisis Center. Aimee listens empathetically to her friends whose families are in crisis, and is sometimes even able to help them through, one day at a time. Shari and Sheila hope to make the world a better place through their studies and, ultimately, their work – Shari in film, and Sheila in Middle Eastern studies and communications. Even Danny contributed to a recent all-nighter at his school by giving a Reiki energy healing workshop to the other eighth-graders.
In many ways, our work – whether as students, professionals, or parents – gives our lives meaning. And the work that I need to do, I believe ever more strongly as time passes, is to transform my years as the mother of a family in crisis into something that will enable me to help other families in a similar situation. My plan to study may be scary, but I’ve been through scarier things. I may feel unequal to the demands of such a concentrated program, but I’ve done more intensive things. If this is what I am meant to be doing – and I truly believe it is – then I simply need to start doing it. I can only trust that God will provide me with the strength I need to make it work.
During the last week, no signs of GVH appeared, and Timmi's pains got worse. Next week she will have a scan to see if the pains she is having are in fact from tumors, but because they are strongest in the places where she has historically had the largest tumors, we are assuming that that's what they are. Therefore, she has started injecting herself every day with interferon, which we hope will stimulate a GVH and attendant GVL (graft versus host and graft versus leukemia) effect. The results of a genetic test have indicated that her present immune system is indeed grafted from Shari’s, and that improves the possibility that the interferon will work. We certainly hope so. If there is no GVH in the next two weeks, she will start getting extra T-cells from Shari in a further attempt to induce the syndrome.
Timmi's mood markedly improved this past week, as well as my own ability to function. A psychologist once told me that in these situations people sometimes need "collapse days". I had a few of those over the last couple of weeks, but now feel like I'm coping again. My life is now slow and stressed - a few years ago, I wouldn't have believed that such a thing exists. I hope to be getting out for more professional work in the near future, and am again making sure to get enough exercise. Those are the things that most help me, so I hope to stay in the coping mode for a while at least. (I also never dreamed that I would ever see work as a kind of vacation!)
Shabbat Shalom to all.
Love,
Sara
March 3, 2005
Several days ago I took an exciting but scary decision. I decided definitely to go to New York this summer to start the MSW program to which I’ve been accepted, even though I still don’t know how I’ll finance the program past the first year. (I wrote about my hope to attend this program in “Plans,” October 2004, and “Waiting,” January 2005.) I made my decision thanks to the feedback and advice of literally everyone I spoke to about my dilemma whether to start the program without knowing I could finish it. Every single person around me – my friends, Don, my children – has told me that I should just go for it, and that the momentum of starting would carry me through. As Shari put it, if this is what I’m meant to do, God will make sure I manage to do it, one way or another. Although it’s hard to escape my fear that things won’t happen the way I hope they will, the chance of finally working at a profession with which I identify completely is too important to me to give up.
Since the age of three and a half, when I started nursery school, I was always part of a framework of either study (which is, after all, our work when we’re young) or a profession, or both. Having children didn’t change that. I had Lisa in the middle of my second year of law school, and was completely determined that parenting wouldn't come at the expense of work, and vice versa. I would do my homework and study for tests while nursing Lisa. Once, when Don was unavailable and we had no other childcare arrangement, I took her with me to class. I sat her on my desk, next to the door in case she needed to be taken out, and gave her a teddy bear to play with. (About half the students who came in past us said something like, “I wish I also had a teddy bear to play with!") This mix of mothering and studying led to some absurd and comic scenes: my six-hour Business Associations exam was the first time I’d gone for more than three hours without nursing Lisa, so there I sat, writing frantically about partnerships and corporations, while my body kept insisting in no uncertain terms that it was time to feed my baby. I left the exam soaked from my neck to my knees!
I went on living an intensely high-energy life, combining motherhood with work (I include study in my definition of work) outside my home; I gave birth to Sheila a week after finishing law school, and to Shari right after finishing my clerkship on the federal court of appeals. When we came to Israel a month later, I immediately entered an ”Ulpan” (a Hebrew language immersion program), after which I enrolled in a Masters program in Jewish law at Hebrew University; Timmi was born when I was one year into the Masters program. The next year, I began work as an intern at a law firm, and Elaine was born just as I completed the mandatory year and a half of internship. I started my career as a licensed attorney with five children up to the age of nine! After Aimee and then Danny were born, I moved from my high-pressure job at a private commercial law firm to a less stressful job with the government, but due to my relatively high position (as deputy legal adviser at a government ministry) I still worked full-time-plus.
All along, Don and I shared our domestic duties according to practical considerations – whoever was free did whatever was needed at the moment. And when Timmi first became ill, I continued working, because it was natural for Don and me to split between us what needed to be done to take care of her and of the other children.
Timmi's relapse was diagnosed shortly after I’d left the legal profession to study mediation. Under those circumstances, I couldn’t get a new regular job. I wanted to be more available for Timmi and my other children this time around, as a relapse is much scarier than a first-time cancer. Also, it was clear that even if I wanted a job outside my home, no one would hire the mother of a child with such a demanding illness. So I took occasional free-lance mediation work, mostly for divorcing couples. For the first time since I was three and a half, I found myself without a regular framework for work or study outside my home. It was a strange feeling, but I was so busy with Timmi and the other kids that I didn’t really have time to notice it much.
When Timmi died, the vacuum she left behind was harder to deal with than the frantic activity of even the most pressured periods in my life before then. All the energy that I managed to find within myself, first when I was parenting seven children while working at a demanding profession, then as a mother dealing with Timmi’s illness and its fallout for the rest of the family – all that energy just dried up. Almost everything I needed to do seemed totally overwhelming; at the same time, I didn’t know what to do with myself during the long, empty hours of the day. It was almost two years before I was able to return to a regular job, and a part-time one at that. (To this day, I haven't felt able to work a full day, and often when I return from work I don't seem to have the strength to do what needs to be done at home.)
Almost miraculously, though, whenever I've been involved in a mediation, I've discovered that elusive energy within myself. I find it fascinating and exciting to be allowed into the emotional lives of my clients and to help them solve their conflicts. Even before I was able to return to work at a regular job, no matter how hard things were at home (both during Timmi’s second illness and after her death) I was always able to leave my troubles outside the door and concetrate on the people sitting in the mediation room with me, and on my work with them. For the first time in my professional life, I was totally absorbed in work about which I felt passionate, and that passion energized me even when I had the strength for little other than what I barely needed to do to keep my family going.
It was a small and simple step from mediating divorces to the desire to work with people to help keep their families whole. And so I began dreaming of retraining as a social worker and becoming a family therapist, finally applying to the MSW program that I'll start, God willing, this coming June. But the program I’m entering is very demanding. It will mean being away from my family for three summers in a row, each time squeezing a full semester’s course load into six weeks or so, with all of a semester’s homework to do and papers to write. It worries me - what if, however much I want to do this, I really don't have the energy to handle such an intensive schedule?
But I know what Timmi would have said. She would have told me to take the risk and go for it, just as she insisted on pushing herself to her own limits despite her illness. She would have reminded me that perhaps the only way to find some meaning in what we all went through together is for each of us to use what our experience taught us to try and ease other people's suffering, where we can. Elaine does this by working with disadvantaged Jewish and Arab children, and by helping Israeli and Palestinian young women to work together toward a vision of peaceful coexistence. Lisa does this through her work at the Rape Crisis Center. Aimee listens empathetically to her friends whose families are in crisis, and is sometimes even able to help them through, one day at a time. Shari and Sheila hope to make the world a better place through their studies and, ultimately, their work – Shari in film, and Sheila in Middle Eastern studies and communications. Even Danny contributed to a recent all-nighter at his school by giving a Reiki energy healing workshop to the other eighth-graders.
In many ways, our work – whether as students, professionals, or parents – gives our lives meaning. And the work that I need to do, I believe ever more strongly as time passes, is to transform my years as the mother of a family in crisis into something that will enable me to help other families in a similar situation. My plan to study may be scary, but I’ve been through scarier things. I may feel unequal to the demands of such a concentrated program, but I’ve done more intensive things. If this is what I am meant to be doing – and I truly believe it is – then I simply need to start doing it. I can only trust that God will provide me with the strength I need to make it work.
Saturday, February 26, 2005
Support, Revisited
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.
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 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.
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