August 17, 2000
There is not that much to report. Timmi returned to the hospital on Sunday for her release, and came home "finally" that evening; on Tuesday we were back in day care (routine). At home she has been sleeping a large part of the time, and when awake usually feels quite weak. She again can't keep much of anything down, which is a problem as she needs to take many pills every day (she gets her fluids and nutrition intravenously).
A positive take on all this is that Timmi's nausea, and perhaps her weakness as well, may very well be due to the poor present functioning of her liver, which in turn may be due to a certain level of GVH. And as we all know, GVH, while it can be extremely uncomfortable, is what we hope will put Timmi back into remission from her cancer. We don't know what is happening, but it is not unreasonable to believe and hope that she does have some GVH and that it may work against the cancer.
I have been in rather poor shape; I got some kind of respiratory virus last Friday morning (probably not coincidentally, the day after taking Timmi home), which then turned into asthma, and I am still not fully over it. I am of course very tired, and I must say that my stress level has been lower. I am starting to feel somewhat better, though, and hope to be back to "normal" within the next few days. The end of the summer break, if there is no school strike at its end, will also help.
Shabbat Shalom to all,
Sara
August 24, 2000
This week has been stable for Timmi, for better and for worse. For better, in that she still has no (or very little) pain despite continuing to reduce her dose of narcotic painkillers. She will continue taking the anti-inflammatory medicine that helped her so much when she was still hospitalized, as she does has quite a severe inflammation, probably in her joints, and possibly as a result of some level of GVH. Her blood tests are to a degree compatible with some GVH, so we are continuing to hope.
For worse, though, in that she still sleeps most of the time and feels quite awful when she is awake; she feels very weak and can hardly keep anything down. In addition, for the past few days she has been very depressed; nothing appeals to her, and she doesn't feel she has the strength to do anything - not even listen to music or watch a video. We hope that the depression is due to the reduction of her painkiller dosage, and not to something more long-term (though God knows she certainly has enough to be depressed about).
It is very painful to see the depression, as there is truly nothing we can do for her when she gets like this, other than be with her, and being with her does not, on the surface at least, seem to do much of anything (of course it would be much worse if she had no one to be with her). At least with physical pain, we can give her enough morphine to put her to sleep so she doesn't feel it. With depression, there is no such "easy" (ha!) way out. All we can do now is hope and pray it will be temporary.
I am for the most part feeling physically better than I did last week, though I am still quite exhausted. I hope within the next few days to be able to get back to fairly regular exercise.
Shabbat Shalom to all of you.
Love,
Sara
I just went out to the living room after sending out tonight's update, and found Timmi awake and in quite a good mood (though still down physically). This is the first time in several days that she is feeling this good emotionally, and I wanted to share it with you. Let's hope and pray it lasts!
September 26, 2005
It’s becoming harder to get myself to sit down and write this blog; you may have noticed that for some time I’ve been posting entries more seldom than I did at first. The reason is simple – it’s getting more difficult for me to reread, to process and to write about our life five years ago, as Timmi’s last chance came and went, and as she began her slow and gentle journey away from this world. It’s especially difficult for me to look back at that period through the prism of my present life, as I’ve been trying to do in this memoir and memorial. Comparing the two is sometimes just too painful.
Five years ago, I spent my time following the tiny day-to-day changes in Timmi’s condition and mood as one usually follows the news during a war or a hurricane; those changes were the most momentous events of Timmi’s life (and mine) at that time. If there were "big" things happening out there, we just weren't tuned in to them. In contrast, nowadays it seems as if every day brings news of very important life-events: my friends’ children are getting married and having babies; my own adult children are creating and deepening relationships with significant others and making their career choices. The young men and women of Timmi’s generation are now setting out on dynamic and exciting journeys that will shape their lives for decades to come. Part of me is joyful for and with them as they embark on their new paths. But part of me finds it very hard to watch these life-changes, knowing that Timmi will never experience them.
Tomorrow evening, I’ll attend the third wedding that’s taking place over a period of three weeks, of girls the age Timmi would be if she were alive today. The Shabbat before the most recent wedding, Talila, the young bride-to-be (the daughter of a very good friend) had a pre-wedding ceremony at my synagogue. I smiled with pleasure as Talila’s friends, relatives and then the bride herself were called up one after the other to the Torah. Afterwards, all of us threw candies, clapped, sang and danced around the Torah scroll. But as the women danced and sang, I suddenly had a picture of Timmi as she would look today - as I’d seen her in my dream (see “Dreaming,” August 2005) - reading from the Torah and singing and dancing with her friends. Tears of sorrow for my beautiful, lost daughter, mixed with my tears of happiness for Talila, began to work their way up from the pit of my stomach, spread like a burning liquid through my chest, and spilled out my eyes. When Talila’s mother offered me the honor of carrying the Torah scroll back to the Holy Ark, I was unable to accept, because my legs were buckling under me. It took me more than an hour to stop trembling.
Talila's wedding, like all religious Jewish weddings, was joyful beyond words. Have all of you out there been to a real Jewish wedding? The bridegroom, and then the bride, are accompanied to the wedding canopy not only by their parents, but also by their young friends, who sing, dance and clap to the accompaniment of musical instruments (traditionally clarinets and other woodwinds). The guests also sing and clap along to some parts of the ceremony itself. At the ceremony’s conclusion, the groom breaks the traditional glass, as a symbol of mourning and memory of the destruction of ancient Jerusalem.
The music then starts up again and the crowd parts as the new couple leaves the canopy to spend a short time alone before rejoining their guests for the festive meal. As the couple returns, the music and dancing gain in momentum until things get almost wild. The women dance with the bride and around the bride, the men dance with the groom and around the groom, and both are raised above the crowd on chairs and “dance” with each other, each holding the end of a handkerchief. As the atmosphere grows in hilarity, the guests dance, sing and perform tricks to amuse the young couple. When everyone is exhausted, the meal is served, after which everyone gets up for yet more dancing.
It’s a mitzvah to do all one can to make the bride and groom happy at their wedding, and joining in the dancing is part of this. Talila and her groom were radiant, and their joy contagious. Also, I love to dance. So it was with great pleasure that I got up to join the festivities. Around Talila was an inner circle of girls bursting with youth and energy, leaping and dancing passionately; wider circles of older women danced, somewhat more sedately, around them. As I joined one of the outer circles, I couldn’t help but share in the general elation at the young couple's happiness.
But then I was struck once again by a fleeting vision of a 23-year-old Timmi, dancing and singing her heart out together with these girls. And then another vision, even more ephemeral, passed before me: that of Timmi as she might have danced at her own wedding.
After that, I danced like a split personality – one Sara happy and grateful to have the privilege of taking part here and now in this lovely wedding, and the other Sara mourning the wedding that will never be. I danced a crazy person’s dance: two steps to your right – joy, two steps to your left – grief; right foot – laugh; left foot – sob; right – smile; left – cry. But I kept dancing.
Someone asked me, at the pre-wedding Torah reading, whether I would have come if I’d known that I’d end up crying. I answered, yes, I would: I do not want to run away from the happiness that exists in this world – I want to embrace it. I do not want to spend my life overcome with grief for what will never be. And I'm sure that Timmi herself wouldn't have wanted me to stay away from joyful occasions; to the contrary, when I join in to contribute to the happiness of those who were or might have today been her friends, I feel that in a sense I'm dancing on her behalf. At the same time, I don't want to run away from my deep sadness for Timmi and all she might have become. To do so would mean, in a sense, running from Timmi herself.
So I will continue to attend weddings, birth ceremonies and other celebrations - those of my friends’ children, of my children’s friends, and of other young people who should have been Timmi's peers - and, God willing, of my living children. I will continue to do my best to add my joy to theirs at their good fortune.
But a Jewish groom always breaks a glass under his wedding canopy in order to remind himself and all present that there is no happiness in this world that is not mixed with some sorrow. I myself will never again need this reminder; because I'll never again have news of any kind of Timmi’s life, my gladness at others’ good news will forever be tinged with sadness, and with more than a drop of longing.
Monday, September 26, 2005
Monday, September 19, 2005
Loving God - A Partial Response
September 19, 2005
About two weeks ago, a reader who uses the name “Needsabetterjob” left the following comment on my post “Choosing Life, Choosing Faith” (the translations and explanations in square brackets are mine):
“I am still amazed at your continued adherence to all the religious minutae. After what you have been through how are you able to love Hashem [God]? I understand that you do, it is just that I know someone else who had a similar ordeal, that he lost his son around age 6-8. He had a very successful business and still does, but he divorced his wife within a year of the tragedy and then shortly after is living with a non-Jewish woman. He will not have anything to do with religion, even to the point if he is needed for a minyan [a quorum of ten, which is needed to pray publicly] he will not agree, he will not be part of a Mizuman [a quorum of three to lead Grace After Meals], etc...That is, he abandoned his closeness to Hashem. I am interested how you have taken an opposite approach to this man.I am asking because while I have not gone through anything remotely like your tragedy, I am having many difficulties in life, and feel often that Hashem is not with me.”
I admit, Needsabetterjob, that you’ve caught me out. I’ve fairly well avoided dealing directly with the question that you and so many others pose: that of my feelings toward a God who created a world in which there is so much suffering – and who doesn’t intervene when the innocent suffer. I’ve felt that this question is too big for me, and have approached it only obliquely in my posts. I’ve even wondered whether I would really dare tackle it by the time my blog is due to end (in January 2006, five years after Timmi’s death). But now that you’ve asked, I owe you – and perhaps myself – an articulate answer.
I’ve always believed that innocent suffering is THE theological problem in this world. My question, though, has never been, “Why am I suffering?” or why any particular person suffers, but rather has always been, “Why does any blameless person suffer?” In a sense, what my question really boils down to is “Why did God create an imperfect world?” I have no answer to this question, of course, and never will – certainly not in this life. And I see no point in expecting to understand something so deep and fundamental, or becoming angry that I can’t. Already in ancient times, the writer of the Book of Job saw any human attempt to understand the paradox of a just God allowing the innocent to suffer as futile: "It is hidden from the eyes of all the living... God understands the way to it, and He knows its source." Since that time, many minds much greater than mine have grappled with this question, and have not come up with any truly satisfactory solution.
Still, I do believe that I can respond – in part, at least – to the more intimate and personal question of how I can continue to love God even after what my family and I have been through.
Losing faith in God because I suffer would mean presupposing that if I and those I love lead a good life, evil will not befall us. I’m sure this is what your friend is feeling – why should I have anything to do with a God who didn't keep up His end of the bargain, and allowed my blameless child to suffer and die? But given that my basic theological question is “Why anyone?” rather than “Why me?”, my own expectation (if I had one), would be slightly different – I would believe that God has promised humankind that innocent people generally will never suffer, or will never suffer unjustly. If that were my basic belief, though, I would have lost my faith as soon as I opened my eyes and looked around me at this world, in which innocent people – including millions of blameless children – have suffered and died since the beginning of human time.
Yes, I chose, and continue to choose, to be religiously observant despite this enormous philosophical difficulty. Why? Because loving God gives me what I need to survive emotionally in this cruel world; it keeps me from bitterness, cynicism and despair. From the Torah I learn that what I do every day matters to God. No matter what is happening in my life at any particular time, there is work for me to do in the world. In return for doing that work, God has promised me that He will give me the strength to go on: To go on living the life that He has mapped out for me in the Torah as it has been passed down through the centuries. Especially, to go on performing acts of lovingkindness, and raising my children to be the moral, compassionate people they have become, even after our devastating loss. (I find it very inspiring that Judaism requires even the poorest beggar to give a tenth of what he receives to charity.) In return for continuing to engage in those acts of kindness, I receive the love of those around me – which is, I believe, a reflection of God’s love. And God’s love gives me the resilience, as my friend Alan Busch has said (in his comment to my post “Knowing and Not Knowing”), to “glare at the face of adversity and assert: 'You will not get the better of me!'”
I don’t claim to have given here a fully adequate answer to the most difficult theological question ever posed. But I think that my very partial answer does explain why I persevere in Jewish observance - which I admit might well seem illogical or even preposterous to a person whose inner experience has been different from mine. As for the even more intimate question of loving God, my response - the only response I can give - is that I love God because I believe that the loving is mutual, and because I cannot imagine living in this world without that love.
About two weeks ago, a reader who uses the name “Needsabetterjob” left the following comment on my post “Choosing Life, Choosing Faith” (the translations and explanations in square brackets are mine):
“I am still amazed at your continued adherence to all the religious minutae. After what you have been through how are you able to love Hashem [God]? I understand that you do, it is just that I know someone else who had a similar ordeal, that he lost his son around age 6-8. He had a very successful business and still does, but he divorced his wife within a year of the tragedy and then shortly after is living with a non-Jewish woman. He will not have anything to do with religion, even to the point if he is needed for a minyan [a quorum of ten, which is needed to pray publicly] he will not agree, he will not be part of a Mizuman [a quorum of three to lead Grace After Meals], etc...That is, he abandoned his closeness to Hashem. I am interested how you have taken an opposite approach to this man.I am asking because while I have not gone through anything remotely like your tragedy, I am having many difficulties in life, and feel often that Hashem is not with me.”
I admit, Needsabetterjob, that you’ve caught me out. I’ve fairly well avoided dealing directly with the question that you and so many others pose: that of my feelings toward a God who created a world in which there is so much suffering – and who doesn’t intervene when the innocent suffer. I’ve felt that this question is too big for me, and have approached it only obliquely in my posts. I’ve even wondered whether I would really dare tackle it by the time my blog is due to end (in January 2006, five years after Timmi’s death). But now that you’ve asked, I owe you – and perhaps myself – an articulate answer.
I’ve always believed that innocent suffering is THE theological problem in this world. My question, though, has never been, “Why am I suffering?” or why any particular person suffers, but rather has always been, “Why does any blameless person suffer?” In a sense, what my question really boils down to is “Why did God create an imperfect world?” I have no answer to this question, of course, and never will – certainly not in this life. And I see no point in expecting to understand something so deep and fundamental, or becoming angry that I can’t. Already in ancient times, the writer of the Book of Job saw any human attempt to understand the paradox of a just God allowing the innocent to suffer as futile: "It is hidden from the eyes of all the living... God understands the way to it, and He knows its source." Since that time, many minds much greater than mine have grappled with this question, and have not come up with any truly satisfactory solution.
Still, I do believe that I can respond – in part, at least – to the more intimate and personal question of how I can continue to love God even after what my family and I have been through.
Losing faith in God because I suffer would mean presupposing that if I and those I love lead a good life, evil will not befall us. I’m sure this is what your friend is feeling – why should I have anything to do with a God who didn't keep up His end of the bargain, and allowed my blameless child to suffer and die? But given that my basic theological question is “Why anyone?” rather than “Why me?”, my own expectation (if I had one), would be slightly different – I would believe that God has promised humankind that innocent people generally will never suffer, or will never suffer unjustly. If that were my basic belief, though, I would have lost my faith as soon as I opened my eyes and looked around me at this world, in which innocent people – including millions of blameless children – have suffered and died since the beginning of human time.
Yes, I chose, and continue to choose, to be religiously observant despite this enormous philosophical difficulty. Why? Because loving God gives me what I need to survive emotionally in this cruel world; it keeps me from bitterness, cynicism and despair. From the Torah I learn that what I do every day matters to God. No matter what is happening in my life at any particular time, there is work for me to do in the world. In return for doing that work, God has promised me that He will give me the strength to go on: To go on living the life that He has mapped out for me in the Torah as it has been passed down through the centuries. Especially, to go on performing acts of lovingkindness, and raising my children to be the moral, compassionate people they have become, even after our devastating loss. (I find it very inspiring that Judaism requires even the poorest beggar to give a tenth of what he receives to charity.) In return for continuing to engage in those acts of kindness, I receive the love of those around me – which is, I believe, a reflection of God’s love. And God’s love gives me the resilience, as my friend Alan Busch has said (in his comment to my post “Knowing and Not Knowing”), to “glare at the face of adversity and assert: 'You will not get the better of me!'”
I don’t claim to have given here a fully adequate answer to the most difficult theological question ever posed. But I think that my very partial answer does explain why I persevere in Jewish observance - which I admit might well seem illogical or even preposterous to a person whose inner experience has been different from mine. As for the even more intimate question of loving God, my response - the only response I can give - is that I love God because I believe that the loving is mutual, and because I cannot imagine living in this world without that love.
Thursday, September 15, 2005
Anyone Can Comment
I've changed my blog's settings so that as of now, anyone (except a spammer) can add a comment to any of my posts, even people who haven't registered with Blogspot. You're all welcome to write your thoughts or reactions, by clicking on the "Comments" link at the end of the relevant post. I'll be very happy to hear from you.
Sara
Sara
Sunday, September 11, 2005
Knowing and Not Knowing
August 10, 2000
Well, as they say, I have good news and bad news.
The good news is that I brought Timmi home from the hospital today, after five weeks (minus those 3-4 days in between). Her immediate condition is somewhat improved; she can drink pretty much normally, and can eat a bit (fruit so far). A better solution has also been found for her pain - she's back to patches, and is also now taking Mesulid, an anti-inflammatory medication that works especially well on bones and joints. She still sleeps much of the time, though, so in the coming days we will explore the possibility of reducing the dose of her narcotics and/or the anti-anxiety drug that she is still taking. In addition, there are some weak indications that she may now have a certain degree of GVH, so it is possible that at least some of her pain is from GVH rather than from tumors.
The bad news, however, is that because it is possible (though far from certain) that she does have some GVH, it is too risky to give her additional T-cells at this time (and for so long as there is any indication, weak as it may be, of GVH). So if she does not have GVH, or if she does not have a level of GVH that is effective against her cancer, there is nothing more to do to fight the tumors. In other words, we all hope that what has been done so far will be effective against the cancer. If it is not, though, there is nothing more to be done. And because the signs of GVH are so weak, it is quite possible that within a short time the tumors will start growing again. And if that happens, it is not clear that there will be anything to do other than relieve her pain.
I'm sure you can imagine how this news has affected Don and me. We are trying, now, to focus on the hope that the immunotherapy she received a month ago is indeed starting to have the desired effect, and on the day-to-day issues of keeping her as comfortable and happy as possible, and dealing with our not inconsiderable family dynamics.
I have one request of you all. The emails you send are very welcome, and through them I feel your love and support, which is very important to me. However, I am often not up to going into these things in person; I may want to get away from the situation for a little while, or I may just be too tired or "down" to talk about it. Therefore, when you see me please don't broach the subject unless I bring it up myself and seem to want to go into detail. The same goes, of course, for Don. Of course, that doesn't mean "avoid us", but follow our lead as to whether and how much we want to discuss the medical situation.
Shabbat Shalom to all.
Love, Sara
September 10, 2005
What does it really mean to know something? Clearly, there are many levels of knowing, and many choices as to how to react to what knowledge we have. Sometimes, what we believe we know turns out to be false - a product of wishful thinking, or of deep anxiety. And sometimes we know a thing that is so painful, so difficult to hold in our consciousness, that we repress our knowledge and pretend to ourselves that we are in fact blissfully ignorant. My family and I experienced both kinds of self-deception while Timmi was ill, but especially the willful suppression of what we knew - dwelling in what a close friend whose wife is suffering from relapsed breast cancer refers to as the "Fool's Paradise." During the past several weeks, though, we've been struggling with the opposite tendency, as Don has suffered intense pain whose origin has not yet been definitively diagnosed. I’m doing my best not to let my anxiety manifest itself as false “knowledge,” and to wait patiently until I can safely separate fact from fear.
Five years ago, Timmi underwent a highly experimental treatment that we were told was the last chance to save her life. This was almost the last stage of a process that had begun when Timmi’s symptoms (mostly strong pain) first appeared. Over several months, as these initial symptoms worsened and as routine tests came back negative, we began to understand that something was seriously wrong. My imagination began to run wild as we were told, again and again, “We haven’t yet come up with a diagnosis, but whatever it is, it’s very rare.” Could it be an emerging virus, just waiting to be discovered like Legionnaires’ Disease or AIDS or something even worse?
When Timmi’s leukemia was finally diagnosed, I was almost relieved. After all, we were told that childhood leukemia has a 90% cure rate. That wonderful number (90 percent!) gave all of us the hope and optimism we needed to help Timmi get through the successive rounds of chemo, the transplant and the post-transplant treatments that she needed to put her illness behind her forever. Timmi herself told us many times that she had no doubt whatsoever that she’d defeat the cancer. Yes, somewhere inside we knew that she could be on the wrong side of those statistics. But we pushed that knowledge out of our consciousness. We knew, but we didn’t really know.
Four years after Timmi’s first symptoms appeared, she again began to suffer from unexplained pain. By that point, her tests had been negative for more than three years. This meant (we’d been told) that her chance of relapsing was the same as any healthy child’s of becoming ill with leukemia in the first place – in other words, that she’d been “cured.” By then, we’d taught ourselves not to assume that every pain meant a return of the cancer, so we heavily downplayed that possibility. Our attitude was shared by the various doctors to whom we brought her, who attributed her problems to normal adolescent development. When the pain spread, we contacted Timmi’s oncologists, who were also highly skeptical of the possibility of a relapse; it seems that even childhood cancer doctors don’t want to believe that a child really has cancer. However, they reluctantly agreed to order various tests and scans. (As I was sitting with Timmi waiting for her CT scan, she asked why we were there. When I told her the scan was being done “to rule out the possibility that the cancer has returned,” she looked at me incredulously and said, “You must be joking.”)
As time went by and successive tests came closer to indicating a relapse, Don and I had opposite reactions. I called the oncologist every day, and asked it there was yet any definite diagnosis; with each piece of news it became more difficult to repress what I’d really known inside since the pain had first returned – that this time, the pain meant a relapse. Don, on the other had, didn’t want to know anything until the final word came; why hold such monstrous thoughts in our consciousness so long as we could avoid them? This was a very tense time for us; I couldn’t do without knowing what there was to be known at any given time, but my obsession with hearing partial test results put Don in a place where he didn’t want to be. (Of course, hearing the final diagnosis was infinitely worse.)
Quite soon after Timmi's relapse was confirmed, Don and I attended a seminar at which we learned that as yet there had not been a single case in which a child – or adult, for that matter – had ultimately survived a relapse following a bone marrow transplant. In other words, there was no magic cure rate to hold on to, only a history of failure. Still, I managed to push this new piece of knowledge out of my mind. Instead, I concentrated on the hope that the grim statistics wouldn’t apply to Timmi. After all, new treatments were being developed and tested all the time; the trick was to survive long enough to try the next promising approach. Perhaps we could go on like this forever, every so often trying a new treatment that would keep her alive at least until the next came along? Perhaps Timmi would even be written up as a success story for a new approach? Perhaps a miracle would occur…?
But as the cancer returned and gained ground after each treatment we tried – first a different kind of chemo, then a second transplant, then immunotherapy, then that final, last-chance experiment – it became harder to push away the knowledge that it really might happen, that Timmi might actually die. I staved off that horrifying thought by repeating to myself, and to anyone who asked: “We hope this latest treatment will work… we pray she’ll respond this time… we’ve been told there’s a chance…” It was only this mantra that kept me going during those last months, as I held on for dear life to any small sign of progress.
After Timmi left this world, of course, I could no longer play these games with myself. The stark, raw fact of her death lay in wait for me and all my family as we awoke every morning, jumped out at us from behind every corner as we went through the day, and got into bed with us every night. And now we had learned that not knowing a thing doesn’t prevent it from being real.
So we went to the opposite extreme; we became a family of hypochondriacs. Each time one of my older daughters had a backache, she was immediately convinced it was leukemia. In every new beauty mark on one of the younger children, I saw skin cancer. Any ache in a joint or a bone sent me running for a bone scan; a persistent headache could only be a sign of the worst. It's even happened that family members have “known” that their pain was caused by cancer – and accepted the “fact” that their days were numbered – before getting final (negative) test results.
Although we’ve calmed down somewhat as time has gone by, difficult and undiagnosed medical situations still evoke a dread that we sometimes experience as "knowledge" that the inevitable has finally happened, that our fate has finally caught up with us. So it’s been for the past several weeks; Don has been suffering intractable pain that is most likely due to a badly slipped disc, but we still need to confirm the diagnosis with an MRI (“to rule out other pathologies,” in the words of the CT scan report). We’ve been told that because there are no clinical indications (other than pain) of those dreaded “other pathologies,” chances are overwhelming that Don’s problem is orthopedic and nothing more. The trouble is, I’ve heard too many times before that “all the tests are normal,” and about statistical probabilities being on our side.
This time, I’m working very hard to keep recognizing my dread as fear and nothing else. I remind myself that I can’t possibly know what the scan will show; that my feelings are not due to déja vu, but only a reaction to a normal diagnostic process.
Still, until we finish that process, I won't be entirely convinced that I’m not living once again in that Fools' Paradise, refusing to acknowledge a truth that, deep down inside, I really do know.
Well, as they say, I have good news and bad news.
The good news is that I brought Timmi home from the hospital today, after five weeks (minus those 3-4 days in between). Her immediate condition is somewhat improved; she can drink pretty much normally, and can eat a bit (fruit so far). A better solution has also been found for her pain - she's back to patches, and is also now taking Mesulid, an anti-inflammatory medication that works especially well on bones and joints. She still sleeps much of the time, though, so in the coming days we will explore the possibility of reducing the dose of her narcotics and/or the anti-anxiety drug that she is still taking. In addition, there are some weak indications that she may now have a certain degree of GVH, so it is possible that at least some of her pain is from GVH rather than from tumors.
The bad news, however, is that because it is possible (though far from certain) that she does have some GVH, it is too risky to give her additional T-cells at this time (and for so long as there is any indication, weak as it may be, of GVH). So if she does not have GVH, or if she does not have a level of GVH that is effective against her cancer, there is nothing more to do to fight the tumors. In other words, we all hope that what has been done so far will be effective against the cancer. If it is not, though, there is nothing more to be done. And because the signs of GVH are so weak, it is quite possible that within a short time the tumors will start growing again. And if that happens, it is not clear that there will be anything to do other than relieve her pain.
I'm sure you can imagine how this news has affected Don and me. We are trying, now, to focus on the hope that the immunotherapy she received a month ago is indeed starting to have the desired effect, and on the day-to-day issues of keeping her as comfortable and happy as possible, and dealing with our not inconsiderable family dynamics.
I have one request of you all. The emails you send are very welcome, and through them I feel your love and support, which is very important to me. However, I am often not up to going into these things in person; I may want to get away from the situation for a little while, or I may just be too tired or "down" to talk about it. Therefore, when you see me please don't broach the subject unless I bring it up myself and seem to want to go into detail. The same goes, of course, for Don. Of course, that doesn't mean "avoid us", but follow our lead as to whether and how much we want to discuss the medical situation.
Shabbat Shalom to all.
Love, Sara
September 10, 2005
What does it really mean to know something? Clearly, there are many levels of knowing, and many choices as to how to react to what knowledge we have. Sometimes, what we believe we know turns out to be false - a product of wishful thinking, or of deep anxiety. And sometimes we know a thing that is so painful, so difficult to hold in our consciousness, that we repress our knowledge and pretend to ourselves that we are in fact blissfully ignorant. My family and I experienced both kinds of self-deception while Timmi was ill, but especially the willful suppression of what we knew - dwelling in what a close friend whose wife is suffering from relapsed breast cancer refers to as the "Fool's Paradise." During the past several weeks, though, we've been struggling with the opposite tendency, as Don has suffered intense pain whose origin has not yet been definitively diagnosed. I’m doing my best not to let my anxiety manifest itself as false “knowledge,” and to wait patiently until I can safely separate fact from fear.
Five years ago, Timmi underwent a highly experimental treatment that we were told was the last chance to save her life. This was almost the last stage of a process that had begun when Timmi’s symptoms (mostly strong pain) first appeared. Over several months, as these initial symptoms worsened and as routine tests came back negative, we began to understand that something was seriously wrong. My imagination began to run wild as we were told, again and again, “We haven’t yet come up with a diagnosis, but whatever it is, it’s very rare.” Could it be an emerging virus, just waiting to be discovered like Legionnaires’ Disease or AIDS or something even worse?
When Timmi’s leukemia was finally diagnosed, I was almost relieved. After all, we were told that childhood leukemia has a 90% cure rate. That wonderful number (90 percent!) gave all of us the hope and optimism we needed to help Timmi get through the successive rounds of chemo, the transplant and the post-transplant treatments that she needed to put her illness behind her forever. Timmi herself told us many times that she had no doubt whatsoever that she’d defeat the cancer. Yes, somewhere inside we knew that she could be on the wrong side of those statistics. But we pushed that knowledge out of our consciousness. We knew, but we didn’t really know.
Four years after Timmi’s first symptoms appeared, she again began to suffer from unexplained pain. By that point, her tests had been negative for more than three years. This meant (we’d been told) that her chance of relapsing was the same as any healthy child’s of becoming ill with leukemia in the first place – in other words, that she’d been “cured.” By then, we’d taught ourselves not to assume that every pain meant a return of the cancer, so we heavily downplayed that possibility. Our attitude was shared by the various doctors to whom we brought her, who attributed her problems to normal adolescent development. When the pain spread, we contacted Timmi’s oncologists, who were also highly skeptical of the possibility of a relapse; it seems that even childhood cancer doctors don’t want to believe that a child really has cancer. However, they reluctantly agreed to order various tests and scans. (As I was sitting with Timmi waiting for her CT scan, she asked why we were there. When I told her the scan was being done “to rule out the possibility that the cancer has returned,” she looked at me incredulously and said, “You must be joking.”)
As time went by and successive tests came closer to indicating a relapse, Don and I had opposite reactions. I called the oncologist every day, and asked it there was yet any definite diagnosis; with each piece of news it became more difficult to repress what I’d really known inside since the pain had first returned – that this time, the pain meant a relapse. Don, on the other had, didn’t want to know anything until the final word came; why hold such monstrous thoughts in our consciousness so long as we could avoid them? This was a very tense time for us; I couldn’t do without knowing what there was to be known at any given time, but my obsession with hearing partial test results put Don in a place where he didn’t want to be. (Of course, hearing the final diagnosis was infinitely worse.)
Quite soon after Timmi's relapse was confirmed, Don and I attended a seminar at which we learned that as yet there had not been a single case in which a child – or adult, for that matter – had ultimately survived a relapse following a bone marrow transplant. In other words, there was no magic cure rate to hold on to, only a history of failure. Still, I managed to push this new piece of knowledge out of my mind. Instead, I concentrated on the hope that the grim statistics wouldn’t apply to Timmi. After all, new treatments were being developed and tested all the time; the trick was to survive long enough to try the next promising approach. Perhaps we could go on like this forever, every so often trying a new treatment that would keep her alive at least until the next came along? Perhaps Timmi would even be written up as a success story for a new approach? Perhaps a miracle would occur…?
But as the cancer returned and gained ground after each treatment we tried – first a different kind of chemo, then a second transplant, then immunotherapy, then that final, last-chance experiment – it became harder to push away the knowledge that it really might happen, that Timmi might actually die. I staved off that horrifying thought by repeating to myself, and to anyone who asked: “We hope this latest treatment will work… we pray she’ll respond this time… we’ve been told there’s a chance…” It was only this mantra that kept me going during those last months, as I held on for dear life to any small sign of progress.
After Timmi left this world, of course, I could no longer play these games with myself. The stark, raw fact of her death lay in wait for me and all my family as we awoke every morning, jumped out at us from behind every corner as we went through the day, and got into bed with us every night. And now we had learned that not knowing a thing doesn’t prevent it from being real.
So we went to the opposite extreme; we became a family of hypochondriacs. Each time one of my older daughters had a backache, she was immediately convinced it was leukemia. In every new beauty mark on one of the younger children, I saw skin cancer. Any ache in a joint or a bone sent me running for a bone scan; a persistent headache could only be a sign of the worst. It's even happened that family members have “known” that their pain was caused by cancer – and accepted the “fact” that their days were numbered – before getting final (negative) test results.
Although we’ve calmed down somewhat as time has gone by, difficult and undiagnosed medical situations still evoke a dread that we sometimes experience as "knowledge" that the inevitable has finally happened, that our fate has finally caught up with us. So it’s been for the past several weeks; Don has been suffering intractable pain that is most likely due to a badly slipped disc, but we still need to confirm the diagnosis with an MRI (“to rule out other pathologies,” in the words of the CT scan report). We’ve been told that because there are no clinical indications (other than pain) of those dreaded “other pathologies,” chances are overwhelming that Don’s problem is orthopedic and nothing more. The trouble is, I’ve heard too many times before that “all the tests are normal,” and about statistical probabilities being on our side.
This time, I’m working very hard to keep recognizing my dread as fear and nothing else. I remind myself that I can’t possibly know what the scan will show; that my feelings are not due to déja vu, but only a reaction to a normal diagnostic process.
Still, until we finish that process, I won't be entirely convinced that I’m not living once again in that Fools' Paradise, refusing to acknowledge a truth that, deep down inside, I really do know.
Saturday, August 27, 2005
Dreaming
August 4, 2000
We had another difficult week, although the situation started getting easier toward the end of the week. Timmi slept more or less for 36 hours from last Friday morning to Motzei Shabbat; this was quite hard on Don. At the beginning of the week she also slept through most days, which was in turn hard on me. However, I got a break on Wednesday when Don stayed with Timmi during the day, and came back Thursday to find her feeling considerably better. On Wednesday she stopped getting morphine continuously intravenously, and switched back to the pain patches that she had used before this whole thing started (she can still give herself bursts of IV morphine if she has a particular pain). This apparently was a very good thing, as Thursday morning I came and found her more awake than she had been for the last four weeks, in quite a good mood. She stayed awake for several hours, and was relatively active, talking to people and watching TV. Her pain was somewhat diminished, too, which of course is very good. She also no longer has fever.
Her stomach still hurts when she drinks, though, and she can't keep down more than a small amount of liquid at a time; eating is still out of the question. So she is still not able to leave the hospital.
Another reason for staying in the hospital is that the doctors want to continue testing her blood daily, in order to determine whether GVH is starting, as some blood tests seem to indicate that it may be. By Monday they will make a decision as to whether to leave things as they are, if it seems she is indeed starting GVH, or whether to do another course of (milder this time) chemotherapy and give her another portion of T-cells, if it seems there is no, or not enough, GVH. We certainly hope the GVH is starting, and that it will start doing its job soon.
So anyway, it seems she'll be in for at least another few days.
Shabbat Shalom to all.
Love,
Sara
August 24, 2005
A few nights ago, I saw Timmi in a dream for the first time since she died. In my dream, I was sitting in the living room, facing the window and concentrating on something (I believe it was a book), when I heard the door open. “Hi,” I called out without looking up. “Hi,” said an already not-so-familiar voice. I turned around, and there she was – not as she had looked as a healthy child or as an adolescent in remission, and not as she had looked when she was sick. She looked like the 23-year-old woman that she would have become had she lived.
I half-woke up at that point, and spent the rest of the night trying to reenter the dream, sometimes succeeding in recapturing the sight of this beautiful young lady who was my daughter. Although in my first dream Timmi was moving, taking a few steps into the house, each time I managed to drift back into light sleep what I saw was her standing there greeting me, a half-smile on her face, her image frozen like the last frame in a film that has been cut off abruptly.
Many bereaved parents describe waking up from dreams of their departed children with an overwhelming and painful sense of loss. For me it wasn’t like that at all. Of course, I felt terribly sad that seeing Timmi had only been a dream, and to be reminded that she is no longer present in the real world. But it also felt good to finally have seen her. Ever since she died, I've longed to see her again – even if only in a dream – and envied others whose children appeared to them in dreams while they slept or in visions while they were awake. I’ve always felt that seeing her even in a dream or a hallucination would be better than nothing.
In my only other dream of Timmi, I spoke to her from a public pay telephone. She was lost, or confused, and asked me to come get her, telling me she was at the platform of a particular subway station. In the dream, I ran and ran until I reached the station, entered it and found the platform. I arrived just in time to see the train pulling out of the station – and it was clear to me that Timmi was on that train. I’d missed her; I’d not even caught a glimpse of her face. The sadness and longing with which that dream filled me for days afterward is difficult to describe.
Don has also had only one dream in which he saw Timmi face to face. The doorbell rang, and when Don opened the door, Timmi entered without saying anything. As he moved toward her, he saw that her eyes were staring straight ahead, almost through him, without seeing him. He embraced her, and they both began to fall, at which point Don woke up. Like me, Don feels that he would rather have seen Timmi in his dream – even without her seeing him – than not to have had the dream at all.
Our children have also dreamt of Timmi, generally more often and in more detail than Don and I have. Each, of course, has her or his own special kind of dreams – and feelings about them. For example, Danny’s dreams of his sister are straightforward – he sees her at home or in some other familiar context, and it feels completely natural; to Danny, these are dreams like any other. Aimee’s dreams, on the other hand, have a magical but natural quality to them. The last time she had a Timmi-dream, Timmi came back to life for four days in honor of Aimee’s birthday; it seemed natural in the dream for this to happen – kind of, “Cool, this is a great present.” She awoke with the same mixture that Don and I felt of happiness to have seen her sister again, and pain that in real life she hadn’t gotten the gift she longs for.
Like Aimee, I want magic. But if you ask me what I desire more than anything, my answer wouldn’t be for Timmi to return to this world, or even to find that she’d never have left it. No, if a genie were to pop out of a bottle today and give me just one wish, I would ask to wake up tomorrow morning to find that all of it – the symptoms and diagnosis, the pain and the painkillers, the hospital and the treatments, the GVH and the non-GVH, the skeletal slenderness and the balloon-like bloating, the despair and the heroism, the waiting and the end – was the dream; that what my family and I long for – irrationally, impossibly, and unattainably, but with every fiber of our being – has been the true reality all along.
We had another difficult week, although the situation started getting easier toward the end of the week. Timmi slept more or less for 36 hours from last Friday morning to Motzei Shabbat; this was quite hard on Don. At the beginning of the week she also slept through most days, which was in turn hard on me. However, I got a break on Wednesday when Don stayed with Timmi during the day, and came back Thursday to find her feeling considerably better. On Wednesday she stopped getting morphine continuously intravenously, and switched back to the pain patches that she had used before this whole thing started (she can still give herself bursts of IV morphine if she has a particular pain). This apparently was a very good thing, as Thursday morning I came and found her more awake than she had been for the last four weeks, in quite a good mood. She stayed awake for several hours, and was relatively active, talking to people and watching TV. Her pain was somewhat diminished, too, which of course is very good. She also no longer has fever.
Her stomach still hurts when she drinks, though, and she can't keep down more than a small amount of liquid at a time; eating is still out of the question. So she is still not able to leave the hospital.
Another reason for staying in the hospital is that the doctors want to continue testing her blood daily, in order to determine whether GVH is starting, as some blood tests seem to indicate that it may be. By Monday they will make a decision as to whether to leave things as they are, if it seems she is indeed starting GVH, or whether to do another course of (milder this time) chemotherapy and give her another portion of T-cells, if it seems there is no, or not enough, GVH. We certainly hope the GVH is starting, and that it will start doing its job soon.
So anyway, it seems she'll be in for at least another few days.
Shabbat Shalom to all.
Love,
Sara
August 24, 2005
A few nights ago, I saw Timmi in a dream for the first time since she died. In my dream, I was sitting in the living room, facing the window and concentrating on something (I believe it was a book), when I heard the door open. “Hi,” I called out without looking up. “Hi,” said an already not-so-familiar voice. I turned around, and there she was – not as she had looked as a healthy child or as an adolescent in remission, and not as she had looked when she was sick. She looked like the 23-year-old woman that she would have become had she lived.
I half-woke up at that point, and spent the rest of the night trying to reenter the dream, sometimes succeeding in recapturing the sight of this beautiful young lady who was my daughter. Although in my first dream Timmi was moving, taking a few steps into the house, each time I managed to drift back into light sleep what I saw was her standing there greeting me, a half-smile on her face, her image frozen like the last frame in a film that has been cut off abruptly.
Many bereaved parents describe waking up from dreams of their departed children with an overwhelming and painful sense of loss. For me it wasn’t like that at all. Of course, I felt terribly sad that seeing Timmi had only been a dream, and to be reminded that she is no longer present in the real world. But it also felt good to finally have seen her. Ever since she died, I've longed to see her again – even if only in a dream – and envied others whose children appeared to them in dreams while they slept or in visions while they were awake. I’ve always felt that seeing her even in a dream or a hallucination would be better than nothing.
In my only other dream of Timmi, I spoke to her from a public pay telephone. She was lost, or confused, and asked me to come get her, telling me she was at the platform of a particular subway station. In the dream, I ran and ran until I reached the station, entered it and found the platform. I arrived just in time to see the train pulling out of the station – and it was clear to me that Timmi was on that train. I’d missed her; I’d not even caught a glimpse of her face. The sadness and longing with which that dream filled me for days afterward is difficult to describe.
Don has also had only one dream in which he saw Timmi face to face. The doorbell rang, and when Don opened the door, Timmi entered without saying anything. As he moved toward her, he saw that her eyes were staring straight ahead, almost through him, without seeing him. He embraced her, and they both began to fall, at which point Don woke up. Like me, Don feels that he would rather have seen Timmi in his dream – even without her seeing him – than not to have had the dream at all.
Our children have also dreamt of Timmi, generally more often and in more detail than Don and I have. Each, of course, has her or his own special kind of dreams – and feelings about them. For example, Danny’s dreams of his sister are straightforward – he sees her at home or in some other familiar context, and it feels completely natural; to Danny, these are dreams like any other. Aimee’s dreams, on the other hand, have a magical but natural quality to them. The last time she had a Timmi-dream, Timmi came back to life for four days in honor of Aimee’s birthday; it seemed natural in the dream for this to happen – kind of, “Cool, this is a great present.” She awoke with the same mixture that Don and I felt of happiness to have seen her sister again, and pain that in real life she hadn’t gotten the gift she longs for.
Like Aimee, I want magic. But if you ask me what I desire more than anything, my answer wouldn’t be for Timmi to return to this world, or even to find that she’d never have left it. No, if a genie were to pop out of a bottle today and give me just one wish, I would ask to wake up tomorrow morning to find that all of it – the symptoms and diagnosis, the pain and the painkillers, the hospital and the treatments, the GVH and the non-GVH, the skeletal slenderness and the balloon-like bloating, the despair and the heroism, the waiting and the end – was the dream; that what my family and I long for – irrationally, impossibly, and unattainably, but with every fiber of our being – has been the true reality all along.
Sunday, August 14, 2005
Choosing Life, Choosing Faith
July 27, 2000
As I predicted in my last update, this past week has been a difficult one. Friday and Shabbat Timmi’s stomach pains got worse, and she developed a strong pain in a new place in her side; the morphine was not really working to control the pain. On Sunday the dose of her morphine was greatly increased, and a new drug, halidol, was added. This brought the pain more or less under control pretty quickly, although for a few days she was either sleeping from the morphine, or hurting. At times distraction by watching television allowed her to be awake and relatively pain-free, but seldom. A CT scan she did at the beginning of the week revealed that the pains, and probably also her fever, were (are) a result of an intestinal inflammation. Therefore, she may not eat and may drink only very small amounts. This, of course, adds to her discomfort.
In the last few days her blood counts rose and they are mostly back to a normal level, which has made her feel generally better. She still has a high fever, however, so will stay in the hospital for the time being.
Timmi still shows no signs of GVH, so she may need to receive more T-cell therapy in the near future. Shari's T-cells will be "harvested" again on Sunday and Monday, and frozen for possible future use, because Shari is traveling to the States on Tuesday for an undefined period.
Except for our three and a half day hiatus at home, we have now been in the hospital for three weeks. Luckily, the ward has, for the past week and a half, been able to arrange for Timmi to be in a room by herself, which is certainly vastly preferable to sharing the room with another family, however nice the people may be. This has made this particular hospitalization significantly more bearable, but still I return each evening feeling as if someone had squeezed all the juice out of me. Now I'll get a break, though, because Don stays in the hospital from Friday morning through Sunday morning, which of course exhausts him, but then I take over the days again and our older daughters take the nights (though soon, with Shari in the States as well as Sheila, that will consist of Lisa only, but she is more than willing to sleep in the hospital and even feels better sleeping there when Timmi is there).
I read an excellent book this week, which was recommended to me by Marion and which I found to be well written, well thought-out and in harmony with my theological, philosophical and psychological view of the world. It is called "When Bad Things Happen to Good People", by Harold S. Kushner, and I highly recommend it to anyone troubled by the inherently problematic nature of the combination of three beliefs/phenomena: the existence of an omnipotent God; the belief that God is good and just; and the unavoidable fact that innocent people suffer.
Shabbat Shalom to all of you, and may we all use Shabbat to recover from all of our various hard work and hardships.
Love,
Sara
August 14, 2005
I would like to warmly thank Deborah Weissman for her learned contribution to this post.
Today is Tisha B’Av, the ninth day of the Hebrew month of Av, when Jews mourn the destruction of our Temple in Jerusalem and our expulsion from our land, in 586 B.C.E and then again in 70 C.E. After each terrible loss, our people questioned whether we could go on, when God Himself seemed to have deserted us. But not only did we survive these traumatic events, but we went on to build new and flourishing communities in the Diaspora. And in our second exile, we adjusted to our new reality by creating a new basis for our faith, one that preserved Judaism and permitted it to continue to develop even in the absence of the Temple service that had been so central to Jewish worship.
After I lost Timmi, I too went through a period of deep despair. But as my people have done throughout the centuries, and as Timmi herself did in the face of indescribable suffering (see my previous post), I have chosen to make what I can of my new reality; in other words, I have chosen life. And although Timmi's death has made excruciatingly apparent to me that God does not always protect the innocent in this world, I have chosen faith.
Psalm 137 expresses beautifully the sense of absolute despair that gripped the Jewish people after we were exiled from our land by the Babylonians in the sixth century B.C.E. The Psalm’s first six verses are well known:
By the waters of Babylon we sat and wept, as we remembered Zion.
On the willows there we hung our harps.
For there our captors demanded of us songs, and our tormentors, mirth: “Sing to us a song of Zion!”
How shall we sing God’s song in a foreign land?
If I forget you, Jerusalem, may my right hand wither!
May my tongue cleave to the roof of my mouth, if I do not remember you, if I do not set Jerusalem above my highest joy!
How could the Children of Israel sing God’s song in a foreign land, where God seemed to have deserted us? And how could I, more than 2,500 years later, sing any song at all, after a loss so crushing and so incomprehensible as the loss of my daughter?
In the immediate aftermath of Timmi’s death, I went numb. I could feel neither joy nor sorrow; I could not even weep like Zion’s exiles. As the truth set in that I had lost her forever, I sank into a depression deeper than any I’ve ever experienced – deeper than any I might have thought possible. I lost the desire to do just about everything, and the ability to do anything other than what was strictly necessary to keep my family going. Many times I felt that I did not even want to go on living. I would never have deserted my children by ending my own life, but the thought of having been left behind in such a cruel world was unbearable. Had God, whom I had thought merciful, deserted me?
But God's command to choose life is too strong, and too central to Jewish consciousness, to allow despair to triumph forever. Through His prophet Jeremiah, God told the exiles in Babylon to rebuild their lives: “Build houses and live in them; plant gardens and eat of their fruits. Take wives and have sons and daughters; take wives for your sons, and give your daughters in marriage, that they may bear sons and daughters; multiply there, and do not decrease” (Jeremiah 29:5-6). God did not wish His people to enter a state of perpetual mourning, which would have caused the Jews to wither away and, ultimately, to disappear from the face of the Earth.
Almost six hundred years later, when the second Temple was destroyed, the Jews who lived in the land of Israel faced a similar choice. They could go the way of the Zealots of Masada, who killed first their children and then themselves rather than accept the reality of loss. However, Rabbi Yoḥanan Ben Zakai, one of the greatest of the Mishnaic Sages, chose a different way. He gathered around him the other surviving religious scholars and set off to found Yavneh, a new community about 30 miles from Jerusalem. Together, these Sages began the process of creating new religious forms that would sustain the Jewish people throughout almost 2,000 years of diaspora – a Judaism not dependent on the existence of a Temple; a song to God which could indeed be sung in a foreign land.
Five years ago, Don and I began to watch helplessly as the end of our own private Temple – the home we had created by bringing seven beautiful children into this world – approached, as Timmi began to slip away from us. When the end came, our family was devastated. But as Jews have been doing for more than 25 centuries, we are now in the process of rebuilding our lives, and of trying to make them as meaningful as we can in the face of our trauma and tragedy. And I, like my ancestors before me, am doing my best to preserve my faith in God, and to continue to sing His song in a world that has become incomprehensible.
Where am I to find the strength to do this? Together with Harold Kushner, I believe that when bad things happen to good people, God provides us with a well of strength upon which we can draw to survive our losses and forge new lives for ourselves. This conception is reflected in the Babylonian Talmud: “Come and see how much the Holy One, Blessed Be He, loves Israel. For in every place to which they were dispersed, [His] Presence [remained] with them. They were dispersed to Egypt – the Presence was with them… They were dispersed to Babylon – the Presence was with them… And even when they will be redeemed in the future, the Presence… will return with them from the Diaspora” (Megillah 29A).
God did not desert the Children of Israel after we were exiled from our land, even though at first we felt to the core of our being that He had done so. To the contrary; God has provided us with the strength to survive despite vicious persecution, and with the inspiration to create vibrant communities, a vast body of scholarly literature, and a dynamic tradition that has enabled us to adapt to each new situation in which we’ve found ourselves.
And I, for myself, choose to believe that God has not deserted me, even though I cannot understand His world and even though I can seldom feel His presence directly. As Jews have done throughout the ages, I continue to believe that He will provide me with the strength and inspiration that I need to create a new and meaningful life for myself even in a cruel and staggeringly unjust world. And I believe that He will give me the love that I need to sustain me, as I continue to choose life.
As I predicted in my last update, this past week has been a difficult one. Friday and Shabbat Timmi’s stomach pains got worse, and she developed a strong pain in a new place in her side; the morphine was not really working to control the pain. On Sunday the dose of her morphine was greatly increased, and a new drug, halidol, was added. This brought the pain more or less under control pretty quickly, although for a few days she was either sleeping from the morphine, or hurting. At times distraction by watching television allowed her to be awake and relatively pain-free, but seldom. A CT scan she did at the beginning of the week revealed that the pains, and probably also her fever, were (are) a result of an intestinal inflammation. Therefore, she may not eat and may drink only very small amounts. This, of course, adds to her discomfort.
In the last few days her blood counts rose and they are mostly back to a normal level, which has made her feel generally better. She still has a high fever, however, so will stay in the hospital for the time being.
Timmi still shows no signs of GVH, so she may need to receive more T-cell therapy in the near future. Shari's T-cells will be "harvested" again on Sunday and Monday, and frozen for possible future use, because Shari is traveling to the States on Tuesday for an undefined period.
Except for our three and a half day hiatus at home, we have now been in the hospital for three weeks. Luckily, the ward has, for the past week and a half, been able to arrange for Timmi to be in a room by herself, which is certainly vastly preferable to sharing the room with another family, however nice the people may be. This has made this particular hospitalization significantly more bearable, but still I return each evening feeling as if someone had squeezed all the juice out of me. Now I'll get a break, though, because Don stays in the hospital from Friday morning through Sunday morning, which of course exhausts him, but then I take over the days again and our older daughters take the nights (though soon, with Shari in the States as well as Sheila, that will consist of Lisa only, but she is more than willing to sleep in the hospital and even feels better sleeping there when Timmi is there).
I read an excellent book this week, which was recommended to me by Marion and which I found to be well written, well thought-out and in harmony with my theological, philosophical and psychological view of the world. It is called "When Bad Things Happen to Good People", by Harold S. Kushner, and I highly recommend it to anyone troubled by the inherently problematic nature of the combination of three beliefs/phenomena: the existence of an omnipotent God; the belief that God is good and just; and the unavoidable fact that innocent people suffer.
Shabbat Shalom to all of you, and may we all use Shabbat to recover from all of our various hard work and hardships.
Love,
Sara
August 14, 2005
I would like to warmly thank Deborah Weissman for her learned contribution to this post.
Today is Tisha B’Av, the ninth day of the Hebrew month of Av, when Jews mourn the destruction of our Temple in Jerusalem and our expulsion from our land, in 586 B.C.E and then again in 70 C.E. After each terrible loss, our people questioned whether we could go on, when God Himself seemed to have deserted us. But not only did we survive these traumatic events, but we went on to build new and flourishing communities in the Diaspora. And in our second exile, we adjusted to our new reality by creating a new basis for our faith, one that preserved Judaism and permitted it to continue to develop even in the absence of the Temple service that had been so central to Jewish worship.
After I lost Timmi, I too went through a period of deep despair. But as my people have done throughout the centuries, and as Timmi herself did in the face of indescribable suffering (see my previous post), I have chosen to make what I can of my new reality; in other words, I have chosen life. And although Timmi's death has made excruciatingly apparent to me that God does not always protect the innocent in this world, I have chosen faith.
Psalm 137 expresses beautifully the sense of absolute despair that gripped the Jewish people after we were exiled from our land by the Babylonians in the sixth century B.C.E. The Psalm’s first six verses are well known:
By the waters of Babylon we sat and wept, as we remembered Zion.
On the willows there we hung our harps.
For there our captors demanded of us songs, and our tormentors, mirth: “Sing to us a song of Zion!”
How shall we sing God’s song in a foreign land?
If I forget you, Jerusalem, may my right hand wither!
May my tongue cleave to the roof of my mouth, if I do not remember you, if I do not set Jerusalem above my highest joy!
How could the Children of Israel sing God’s song in a foreign land, where God seemed to have deserted us? And how could I, more than 2,500 years later, sing any song at all, after a loss so crushing and so incomprehensible as the loss of my daughter?
In the immediate aftermath of Timmi’s death, I went numb. I could feel neither joy nor sorrow; I could not even weep like Zion’s exiles. As the truth set in that I had lost her forever, I sank into a depression deeper than any I’ve ever experienced – deeper than any I might have thought possible. I lost the desire to do just about everything, and the ability to do anything other than what was strictly necessary to keep my family going. Many times I felt that I did not even want to go on living. I would never have deserted my children by ending my own life, but the thought of having been left behind in such a cruel world was unbearable. Had God, whom I had thought merciful, deserted me?
But God's command to choose life is too strong, and too central to Jewish consciousness, to allow despair to triumph forever. Through His prophet Jeremiah, God told the exiles in Babylon to rebuild their lives: “Build houses and live in them; plant gardens and eat of their fruits. Take wives and have sons and daughters; take wives for your sons, and give your daughters in marriage, that they may bear sons and daughters; multiply there, and do not decrease” (Jeremiah 29:5-6). God did not wish His people to enter a state of perpetual mourning, which would have caused the Jews to wither away and, ultimately, to disappear from the face of the Earth.
Almost six hundred years later, when the second Temple was destroyed, the Jews who lived in the land of Israel faced a similar choice. They could go the way of the Zealots of Masada, who killed first their children and then themselves rather than accept the reality of loss. However, Rabbi Yoḥanan Ben Zakai, one of the greatest of the Mishnaic Sages, chose a different way. He gathered around him the other surviving religious scholars and set off to found Yavneh, a new community about 30 miles from Jerusalem. Together, these Sages began the process of creating new religious forms that would sustain the Jewish people throughout almost 2,000 years of diaspora – a Judaism not dependent on the existence of a Temple; a song to God which could indeed be sung in a foreign land.
Five years ago, Don and I began to watch helplessly as the end of our own private Temple – the home we had created by bringing seven beautiful children into this world – approached, as Timmi began to slip away from us. When the end came, our family was devastated. But as Jews have been doing for more than 25 centuries, we are now in the process of rebuilding our lives, and of trying to make them as meaningful as we can in the face of our trauma and tragedy. And I, like my ancestors before me, am doing my best to preserve my faith in God, and to continue to sing His song in a world that has become incomprehensible.
Where am I to find the strength to do this? Together with Harold Kushner, I believe that when bad things happen to good people, God provides us with a well of strength upon which we can draw to survive our losses and forge new lives for ourselves. This conception is reflected in the Babylonian Talmud: “Come and see how much the Holy One, Blessed Be He, loves Israel. For in every place to which they were dispersed, [His] Presence [remained] with them. They were dispersed to Egypt – the Presence was with them… They were dispersed to Babylon – the Presence was with them… And even when they will be redeemed in the future, the Presence… will return with them from the Diaspora” (Megillah 29A).
God did not desert the Children of Israel after we were exiled from our land, even though at first we felt to the core of our being that He had done so. To the contrary; God has provided us with the strength to survive despite vicious persecution, and with the inspiration to create vibrant communities, a vast body of scholarly literature, and a dynamic tradition that has enabled us to adapt to each new situation in which we’ve found ourselves.
And I, for myself, choose to believe that God has not deserted me, even though I cannot understand His world and even though I can seldom feel His presence directly. As Jews have done throughout the ages, I continue to believe that He will provide me with the strength and inspiration that I need to create a new and meaningful life for myself even in a cruel and staggeringly unjust world. And I believe that He will give me the love that I need to sustain me, as I continue to choose life.
Sunday, July 31, 2005
Choosing Life
July 14, 2000
Timmi returned home from the hospital today, after a week's hospitalization. In addition to the treatment that she got for her cancer, she also needed intravenous antibiotics because she developed a fever last Thursday morning; it turned out she had a bacterial infection in her blood as well as pneumonia. For the first few days, in addition to receiving a constant, high dose of morphine for the "breakthrough" pain she was experiencing, she was constantly attached to oxygen and had somewhat worryingly low blood pressure. After several days of antibiotics, however, she could be taken off the oxygen and her blood pressure went up somewhat.
For the first several days she was asleep most of the time from the morphine, waking very briefly once during the day and for a couple of hours at night; when she was awake she needed extra doses of morphine to deal with the pain. Gradually, the pain lessened when she was awake and she could even take a few steps, with support. As the chemotherapy started kicking in, her pain was reduced and so was her dose of morphine, enabling her to be pretty much pain-free when she was awake.
On Wednesday (yesterday) she received the T-cells from Shari that we hope will reverse the present oncological trend. The doctors gave her half of the cells they harvested; if she does not develop GVH within the next three weeks, she will get the other half, with possibly more doses after that.
Once she had received the cells, and because her pain, blood pressure and oxygen level were improved, she could be released. She is now connected to a small "home" morphine pump; we will reduce or increase the flow of morphine as needed. Because of the chemo, there is a pretty good chance that she will be able to mostly or entirely go off the morphine by next week. In addition, we will be giving her intravenous antibiotics at home for the next ten days. Of course, if she gets a fever or if the GVH kicks in seriously, she will return to the hospital.
I am quite exhausted after the past eight days. But it is a real gift to see Timmi out of pain, after the nightmare of last week's breakthrough pain (this is pain that cannot be effectively controlled even with high doses of narcotics). I hope we all never ever have to go through this again. Nor anyone else, for that matter, but of course given the world we live in this last wish is unrealistic.
Shabbat Shalom to all.
Love,
Sara
July 21, 2000
After three difficult days at home, during which Timmi was less and less able to drink or eat, she re-entered the hospital on Monday with extremely low blood counts (this is normal after chemotherapy) as well as some dehydration and serious pain in her stomach. The pain is also apparently a side effect of the chemotherapy. She has also developed a fever (to be expected in light of the low blood count), and is generally feeling quite bad. The stomach pains continue whenever she is awake, and she can't drink more than a small amount at a time.
The good things about the hospitalization are that she gets intravenous fluids, nutrition and morphine, the last of which she controls herself with a pump; she gets a steady background dose but can also add to it if she hurts. This is what she does when the stomach pain gets bad; usually the extra dose puts her to sleep. But if the choice is sleep or pain, sleep is obviously preferable. Unfortunately even the pain experts don't know how to keep her awake and comfortable at this point.
A worrying thing is that she still sometimes has pain in her knees, a sign that the chemotherapy shrunk the tumors but not completely. Therefore, it is possible that she will start a new round of chemo once she has recovered from this one. Also, she will get more T- cells if she does not develop GVH within the next couple of weeks.
We are all quite exhausted. Timmi is also quite discouraged, having seemed to progress so many times only to be thrown back again. She was very depressed when she first entered the hospital on Monday, and on Tuesday as well but Tuesday evening perked up a bit and since then has been able to watch TV and have normal conversations during the brief times that she is awake and not in too much pain.
There is no knowing when she will be released, or even whether she will be released before the next round of treatment, if there is one. So we've got at least another grueling week ahead of us. Thank God for Shabbat, though!
Shabbat Shalom to all.
Love,
Sara
July 29, 2005
In the fifth book of the Torah (Deuteronomy 30:19), God commands us to “choose life.” Many, perhaps most, people do not think of life as an option; rather, they live it unthinkingly, and without appreciating how very precious it is. But more than once in my life I have been faced with this choice, and never more so than when Timmi became ill and after she died. In both cases, the choice was not at all a simple one; but both times, I ultimately followed the Torah's command. I have not regretted either choice, and am extremely grateful that God in His mercy gave me the strength to choose correctly.
When Timmi became ill, Don and I were faced with extraordinary life-or-death decisions for which nothing in our previous lives had prepared us. Should we, for example, take Timmi abroad for second or third opinions, or should we simply trust her doctors in Jerusalem? Should we try “natural” alternatives or stick to chemotherapy, despite its horrendous side-effects and the fact (toward the end) that its effects were lasting for shorter and shorter periods, even as it was wearing her body down?
Questions such as these were relatively easy to answer at first. When Timmi was first diagnosed, we were told by a doctor of both Western and Chinese medicine that Timmi’s chances of cure were much higher with conventional medicine; the issue of alternatives immediately became a non-question for us. We very quickly saw that Professor Cividalli, Timmi’s oncologist, was both a true mentch* (I thought of him as a tsaddik**) and a world-class doctor, and found that any time we did consult specialists at prestigious institutions in the U.S., they invariably replied that they would choose exactly the treatment Timmi was receiving. Therefore, we didn't feel the need to disrupt her life and the family’s by taking her abroad for medical consultation (though I did take her to Paris for sheer pleasure; see “Paris,” November 2004).
As the cancer came back after each round of difficult treatment, in each case a shorter time after the treatment ended, living became harder for Timmi. On the one hand, each round gave her, and us, new hope. Perhaps this time the treament would work, and we would finally beat this thing - or at least keep her alive until the next medical breakthrough. But as time went on, it seemed increasingly likely that each treatment would merely cause her to suffer once again the chemo's intense side-effects and the next painful relapse. Was I commanded - and could I bear - to keep consenting to treatments if a longer life would only bring Timmi more agony?
Just about five years ago, after countless courses of chemotherapy and two bone marrow transplants, Don and I found ourselves facing the most difficult choice yet. Timmi’s doctors told us that there was only one option left to try. They could give her a highly experimental treatment - additional T-cells from Shari, but without any medication to moderate the effects of the GVH*** that the treatment might cause. The treatment carried the risk that uncontrolled GVH would kill Timmi, perhaps slowly and very painfully. But without treatment, the cancer would certainly kill her, and there would be no relief from the pain she was suffering at that time, other than through the fog and sleep of morphine.
The evening after the doctors gave us this choice, Don and I went for a long walk in Jerusalem’s Botanic Garden. We walked though the garden’s Australia section, and back through its North America section. We then sat down on a bench next to the lake near the garden’s entrance. Against the surreally peaceful sound of frogs calling from the lake, and the unbearably sweet fragrance of the garden's flowers, we finally faced squarely the overwhelmingly painful question we had to answer. What it came down to was whether to consent to a treatment that held a tiny prospect of success, but could also go wild in her body and cause her immense suffering - before eventually killing her. (We had not even been promised that the proposed treatment could reduce or eliminate Timmi's pain from the cancer.) The alternative was to spare her the risk, knowing that our decision would mean admitting defeat, and try our best to control her pain for the next few months until her certain death. A Hobson’s choice by any measure.
We struggled with our fear, our hope, and our despair, casting about for some guidance. How were we, as parents and as God-fearing Jews, to act at such an extreme and extraordinary time? I remembered how Professor Cividalli, who himself suffered from a chronic leukemia, had told me that he had hesitated before opting to undergo his first bone marrow transplant about a year after Timmi’s first transplant, after seeing patients die painfully from GVH. In the end, he had decided that any risk was worth the hope of life - and became the oldest patient ever to receive a bone marrow transplant in the hospital’s history. He had chosen life. He was not an observant man, and so it may be that he did not make his choice on the direct basis of the Torah's command. I believe, though, that he did so because as Jew he had been raised and taught to believe that every human being was created in God’s image and that, consequently, life itself - whatever its risks - is precious and of infinite value.
Don and I decided that the hope the new treatment offered - a possibility (however small) of a significant remission, together with relief from Timmi’s physical agony, was worth the risk. We both felt that although we might not have made the same decision had our own lives been at stake, we could not possiby act in a way that we knew for certain would end Timmi’s.
At the time we were agonizing over what to do, Timmi was barely conscious because of the morphine she was taking to ease her pain, and so we could not directly ask her how she felt about the risks of the T-cell treatment. But after we had made our decision to consent to the treatment, Timmi herself strengthened our resolve. When I entered her room just as she was about to receive the T-cells, and as she was sinking into a deep morphine sleep, she opened her eyes and looked at me.
“Ima,**** I’m afraid,” she said.
“What are you afraid of?” I asked, thinking she would say that she was afraid her pain would never end, as she had many times before.
“I’m afraid I’m going to die,” she answered, and slipped into sleep.
Timmi's reply told me all I needed to know. As much as she had suffered up to that time and as much pain as she was in at that moment, Timmi had unhesitatingly chosen life.
To be continued.
*Mentch - Literally, “a person” in Yiddish; a fine human being.
**Tsaddik - A righteous and saintly person.
***GVH - Grafts Versus Host Disease; see my previous posts for a fuller explanation.
****Ima - Hebrew for “Mom.”
Timmi returned home from the hospital today, after a week's hospitalization. In addition to the treatment that she got for her cancer, she also needed intravenous antibiotics because she developed a fever last Thursday morning; it turned out she had a bacterial infection in her blood as well as pneumonia. For the first few days, in addition to receiving a constant, high dose of morphine for the "breakthrough" pain she was experiencing, she was constantly attached to oxygen and had somewhat worryingly low blood pressure. After several days of antibiotics, however, she could be taken off the oxygen and her blood pressure went up somewhat.
For the first several days she was asleep most of the time from the morphine, waking very briefly once during the day and for a couple of hours at night; when she was awake she needed extra doses of morphine to deal with the pain. Gradually, the pain lessened when she was awake and she could even take a few steps, with support. As the chemotherapy started kicking in, her pain was reduced and so was her dose of morphine, enabling her to be pretty much pain-free when she was awake.
On Wednesday (yesterday) she received the T-cells from Shari that we hope will reverse the present oncological trend. The doctors gave her half of the cells they harvested; if she does not develop GVH within the next three weeks, she will get the other half, with possibly more doses after that.
Once she had received the cells, and because her pain, blood pressure and oxygen level were improved, she could be released. She is now connected to a small "home" morphine pump; we will reduce or increase the flow of morphine as needed. Because of the chemo, there is a pretty good chance that she will be able to mostly or entirely go off the morphine by next week. In addition, we will be giving her intravenous antibiotics at home for the next ten days. Of course, if she gets a fever or if the GVH kicks in seriously, she will return to the hospital.
I am quite exhausted after the past eight days. But it is a real gift to see Timmi out of pain, after the nightmare of last week's breakthrough pain (this is pain that cannot be effectively controlled even with high doses of narcotics). I hope we all never ever have to go through this again. Nor anyone else, for that matter, but of course given the world we live in this last wish is unrealistic.
Shabbat Shalom to all.
Love,
Sara
July 21, 2000
After three difficult days at home, during which Timmi was less and less able to drink or eat, she re-entered the hospital on Monday with extremely low blood counts (this is normal after chemotherapy) as well as some dehydration and serious pain in her stomach. The pain is also apparently a side effect of the chemotherapy. She has also developed a fever (to be expected in light of the low blood count), and is generally feeling quite bad. The stomach pains continue whenever she is awake, and she can't drink more than a small amount at a time.
The good things about the hospitalization are that she gets intravenous fluids, nutrition and morphine, the last of which she controls herself with a pump; she gets a steady background dose but can also add to it if she hurts. This is what she does when the stomach pain gets bad; usually the extra dose puts her to sleep. But if the choice is sleep or pain, sleep is obviously preferable. Unfortunately even the pain experts don't know how to keep her awake and comfortable at this point.
A worrying thing is that she still sometimes has pain in her knees, a sign that the chemotherapy shrunk the tumors but not completely. Therefore, it is possible that she will start a new round of chemo once she has recovered from this one. Also, she will get more T- cells if she does not develop GVH within the next couple of weeks.
We are all quite exhausted. Timmi is also quite discouraged, having seemed to progress so many times only to be thrown back again. She was very depressed when she first entered the hospital on Monday, and on Tuesday as well but Tuesday evening perked up a bit and since then has been able to watch TV and have normal conversations during the brief times that she is awake and not in too much pain.
There is no knowing when she will be released, or even whether she will be released before the next round of treatment, if there is one. So we've got at least another grueling week ahead of us. Thank God for Shabbat, though!
Shabbat Shalom to all.
Love,
Sara
July 29, 2005
In the fifth book of the Torah (Deuteronomy 30:19), God commands us to “choose life.” Many, perhaps most, people do not think of life as an option; rather, they live it unthinkingly, and without appreciating how very precious it is. But more than once in my life I have been faced with this choice, and never more so than when Timmi became ill and after she died. In both cases, the choice was not at all a simple one; but both times, I ultimately followed the Torah's command. I have not regretted either choice, and am extremely grateful that God in His mercy gave me the strength to choose correctly.
When Timmi became ill, Don and I were faced with extraordinary life-or-death decisions for which nothing in our previous lives had prepared us. Should we, for example, take Timmi abroad for second or third opinions, or should we simply trust her doctors in Jerusalem? Should we try “natural” alternatives or stick to chemotherapy, despite its horrendous side-effects and the fact (toward the end) that its effects were lasting for shorter and shorter periods, even as it was wearing her body down?
Questions such as these were relatively easy to answer at first. When Timmi was first diagnosed, we were told by a doctor of both Western and Chinese medicine that Timmi’s chances of cure were much higher with conventional medicine; the issue of alternatives immediately became a non-question for us. We very quickly saw that Professor Cividalli, Timmi’s oncologist, was both a true mentch* (I thought of him as a tsaddik**) and a world-class doctor, and found that any time we did consult specialists at prestigious institutions in the U.S., they invariably replied that they would choose exactly the treatment Timmi was receiving. Therefore, we didn't feel the need to disrupt her life and the family’s by taking her abroad for medical consultation (though I did take her to Paris for sheer pleasure; see “Paris,” November 2004).
As the cancer came back after each round of difficult treatment, in each case a shorter time after the treatment ended, living became harder for Timmi. On the one hand, each round gave her, and us, new hope. Perhaps this time the treament would work, and we would finally beat this thing - or at least keep her alive until the next medical breakthrough. But as time went on, it seemed increasingly likely that each treatment would merely cause her to suffer once again the chemo's intense side-effects and the next painful relapse. Was I commanded - and could I bear - to keep consenting to treatments if a longer life would only bring Timmi more agony?
Just about five years ago, after countless courses of chemotherapy and two bone marrow transplants, Don and I found ourselves facing the most difficult choice yet. Timmi’s doctors told us that there was only one option left to try. They could give her a highly experimental treatment - additional T-cells from Shari, but without any medication to moderate the effects of the GVH*** that the treatment might cause. The treatment carried the risk that uncontrolled GVH would kill Timmi, perhaps slowly and very painfully. But without treatment, the cancer would certainly kill her, and there would be no relief from the pain she was suffering at that time, other than through the fog and sleep of morphine.
The evening after the doctors gave us this choice, Don and I went for a long walk in Jerusalem’s Botanic Garden. We walked though the garden’s Australia section, and back through its North America section. We then sat down on a bench next to the lake near the garden’s entrance. Against the surreally peaceful sound of frogs calling from the lake, and the unbearably sweet fragrance of the garden's flowers, we finally faced squarely the overwhelmingly painful question we had to answer. What it came down to was whether to consent to a treatment that held a tiny prospect of success, but could also go wild in her body and cause her immense suffering - before eventually killing her. (We had not even been promised that the proposed treatment could reduce or eliminate Timmi's pain from the cancer.) The alternative was to spare her the risk, knowing that our decision would mean admitting defeat, and try our best to control her pain for the next few months until her certain death. A Hobson’s choice by any measure.
We struggled with our fear, our hope, and our despair, casting about for some guidance. How were we, as parents and as God-fearing Jews, to act at such an extreme and extraordinary time? I remembered how Professor Cividalli, who himself suffered from a chronic leukemia, had told me that he had hesitated before opting to undergo his first bone marrow transplant about a year after Timmi’s first transplant, after seeing patients die painfully from GVH. In the end, he had decided that any risk was worth the hope of life - and became the oldest patient ever to receive a bone marrow transplant in the hospital’s history. He had chosen life. He was not an observant man, and so it may be that he did not make his choice on the direct basis of the Torah's command. I believe, though, that he did so because as Jew he had been raised and taught to believe that every human being was created in God’s image and that, consequently, life itself - whatever its risks - is precious and of infinite value.
Don and I decided that the hope the new treatment offered - a possibility (however small) of a significant remission, together with relief from Timmi’s physical agony, was worth the risk. We both felt that although we might not have made the same decision had our own lives been at stake, we could not possiby act in a way that we knew for certain would end Timmi’s.
At the time we were agonizing over what to do, Timmi was barely conscious because of the morphine she was taking to ease her pain, and so we could not directly ask her how she felt about the risks of the T-cell treatment. But after we had made our decision to consent to the treatment, Timmi herself strengthened our resolve. When I entered her room just as she was about to receive the T-cells, and as she was sinking into a deep morphine sleep, she opened her eyes and looked at me.
“Ima,**** I’m afraid,” she said.
“What are you afraid of?” I asked, thinking she would say that she was afraid her pain would never end, as she had many times before.
“I’m afraid I’m going to die,” she answered, and slipped into sleep.
Timmi's reply told me all I needed to know. As much as she had suffered up to that time and as much pain as she was in at that moment, Timmi had unhesitatingly chosen life.
To be continued.
*Mentch - Literally, “a person” in Yiddish; a fine human being.
**Tsaddik - A righteous and saintly person.
***GVH - Grafts Versus Host Disease; see my previous posts for a fuller explanation.
****Ima - Hebrew for “Mom.”
Sunday, July 17, 2005
Pain and Poetry II
June 30, 2000
So much has happened in the last week that it's hard to know where to begin.
I came home from synagogue on Shabbat to find that Timmi had awakened that morning with very strong pains in all the old tumor places, as well as in some new places. She could not walk on her own and needed the wheelchair even to get around inside the house. We immediately added a pain patch, and gave her morphine orally, but nothing really helped all day Shabbat. After Shabbat, after consulting with Dr. Cherney, we increased the dose of morphine and that helped somewhat.
Sunday morning the pains had decreased a bit when she woke up, and after calling her oncologist I took her to the hospital, did blood tests and scheduled a bone marrow test and biopsy for the next day (Monday), and a scan for this coming Monday. The pain started getting worse again in the middle of the day so we added another patch, all together doubling the dosage of painkiller as compared to the amount she had been getting before the pains started on Shabbat. So much for the theory that the tumors were shrinking, or at least that they were shrinking in a consistent way.
After the bone marrow test and biopsy on Monday (when she woke up with a significant improvement in her pain level), the doctor looked at the slides from the marrow. He said he did not see "anything special" but was most interested in the results of the biopsy, which would be available only in a few days. I assume they will be ready by the time we go on Monday for the scan.
Because the slides looked relatively unspecial, because there would be no test results within the next days, and because the pain was again pretty much under control, Don and I were able, after bringing Timmi home from the hospital Monday afternoon, to get away for our vacation after all; as you can imagine, there was serious doubt from Shabbat until Monday noon as to whether we would really be able to go. So we lost several hours; not so terrible.
We did have a wonderful time at Mitzpe HaYamim. I had a different kind of massage each day! We also went for a day of hiking in the Golan (while it lasts, though we've been saying this since 1990 or so). The kids were fine while we were away, with Lisa and Shari very competently running things (even though Lisa, bless her heart, had jet lag as she arrived from the States Tuesday morning).
So now the next step is the scan this coming Monday, and the biopsy results. Then we'll see.
Shabbat Shalom to all.
Love,
Sara
July 6, 2000
Things are continuing not to go well. On Wednesday Timmi woke up with a pain in one of her knees that got stronger during the day, and in fact was so strong that she couldn't even get in and out of a wheelchair to get around, and Don had to carry her from place to place, and that only when necessary because any movement was excruciating. No amount of painkiller had a serious effect on the pain, which also kept her up at night. We spoke to her oncologist (Professor Cividalli) who told us that the PET scan that she had on Monday show both a spreading and a strengthening of the cancer, and so asked us to hospitalize her today. She will get a few days of chemotherapy, in order to shrink the tumors and ease the pain, and then will receive "T-cells" from Shari in an attempt to restart the GVH that she got and was suppressed when it got too strong. This time (assuming she gets GVH this time), even if it gets strong it won't be suppressed unless it gets actually dangerous.
There are some people we know and know of, including Prof. Cividalli himself, for whom this T-cell therapy worked wonderfully - after a rough spell with GVH, they now have a livable level of GVH and their cancers are in remission. Of course, there are also people for whom it did not work.
The pain is still not under control, but we hope it will be within the next day or so. In the meantime, it is quite painful for us, as well, to watch her going through this.
Shabbat Shalom to all.
Love,
Sara
July 16, 2005
There is no physical pain quite like the pain of cancer. And there is no emotional pain quite like that of a parent watching her child endure the pain of cancer. And both the child’s and the parent’s suffering is magnified by knowing what the pain signifies – that the tumors have returned or are proliferating.
Timmi wrote a poem in April 1999, a few months after she first relapsed, when her pain began to spread and intensify, signaling that the cancer was metastisizing throughout her bones. The words of that poem could equally describe her experience of the final, massive relapse that attacked her when I wrote these updates a little more than a year later.
It
is
spreading further and further
and
conquering every spot that had been free
Poisonous, black malicious
Chuckling of devastation, of evil, of defenselessness, of some
dark power
Extending long and emaciated and terrible and destructive arms
that grow
like some horrible nightmare from which we’ve not awakened and we'll not awaken
ever
And twist and twi-
st
and distort
and deform
and hold on
Hold fast by the nails Hold and do not let go Hold fast and wound
And if it does not bring death it will bring destruction of some other kind
Because there are no few kinds (to each his own destruction) Here it’s
bringing
So much has happened in the last week that it's hard to know where to begin.
I came home from synagogue on Shabbat to find that Timmi had awakened that morning with very strong pains in all the old tumor places, as well as in some new places. She could not walk on her own and needed the wheelchair even to get around inside the house. We immediately added a pain patch, and gave her morphine orally, but nothing really helped all day Shabbat. After Shabbat, after consulting with Dr. Cherney, we increased the dose of morphine and that helped somewhat.
Sunday morning the pains had decreased a bit when she woke up, and after calling her oncologist I took her to the hospital, did blood tests and scheduled a bone marrow test and biopsy for the next day (Monday), and a scan for this coming Monday. The pain started getting worse again in the middle of the day so we added another patch, all together doubling the dosage of painkiller as compared to the amount she had been getting before the pains started on Shabbat. So much for the theory that the tumors were shrinking, or at least that they were shrinking in a consistent way.
After the bone marrow test and biopsy on Monday (when she woke up with a significant improvement in her pain level), the doctor looked at the slides from the marrow. He said he did not see "anything special" but was most interested in the results of the biopsy, which would be available only in a few days. I assume they will be ready by the time we go on Monday for the scan.
Because the slides looked relatively unspecial, because there would be no test results within the next days, and because the pain was again pretty much under control, Don and I were able, after bringing Timmi home from the hospital Monday afternoon, to get away for our vacation after all; as you can imagine, there was serious doubt from Shabbat until Monday noon as to whether we would really be able to go. So we lost several hours; not so terrible.
We did have a wonderful time at Mitzpe HaYamim. I had a different kind of massage each day! We also went for a day of hiking in the Golan (while it lasts, though we've been saying this since 1990 or so). The kids were fine while we were away, with Lisa and Shari very competently running things (even though Lisa, bless her heart, had jet lag as she arrived from the States Tuesday morning).
So now the next step is the scan this coming Monday, and the biopsy results. Then we'll see.
Shabbat Shalom to all.
Love,
Sara
July 6, 2000
Things are continuing not to go well. On Wednesday Timmi woke up with a pain in one of her knees that got stronger during the day, and in fact was so strong that she couldn't even get in and out of a wheelchair to get around, and Don had to carry her from place to place, and that only when necessary because any movement was excruciating. No amount of painkiller had a serious effect on the pain, which also kept her up at night. We spoke to her oncologist (Professor Cividalli) who told us that the PET scan that she had on Monday show both a spreading and a strengthening of the cancer, and so asked us to hospitalize her today. She will get a few days of chemotherapy, in order to shrink the tumors and ease the pain, and then will receive "T-cells" from Shari in an attempt to restart the GVH that she got and was suppressed when it got too strong. This time (assuming she gets GVH this time), even if it gets strong it won't be suppressed unless it gets actually dangerous.
There are some people we know and know of, including Prof. Cividalli himself, for whom this T-cell therapy worked wonderfully - after a rough spell with GVH, they now have a livable level of GVH and their cancers are in remission. Of course, there are also people for whom it did not work.
The pain is still not under control, but we hope it will be within the next day or so. In the meantime, it is quite painful for us, as well, to watch her going through this.
Shabbat Shalom to all.
Love,
Sara
July 16, 2005
There is no physical pain quite like the pain of cancer. And there is no emotional pain quite like that of a parent watching her child endure the pain of cancer. And both the child’s and the parent’s suffering is magnified by knowing what the pain signifies – that the tumors have returned or are proliferating.
Timmi wrote a poem in April 1999, a few months after she first relapsed, when her pain began to spread and intensify, signaling that the cancer was metastisizing throughout her bones. The words of that poem could equally describe her experience of the final, massive relapse that attacked her when I wrote these updates a little more than a year later.
It
is
spreading further and further
and
conquering every spot that had been free
Poisonous, black malicious
Chuckling of devastation, of evil, of defenselessness, of some
dark power
Extending long and emaciated and terrible and destructive arms
that grow
like some horrible nightmare from which we’ve not awakened and we'll not awaken
ever
And twist and twi-
st
and distort
and deform
and hold on
Hold fast by the nails Hold and do not let go Hold fast and wound
And if it does not bring death it will bring destruction of some other kind
Because there are no few kinds (to each his own destruction) Here it’s
bringing
That summer five years ago was the last time Timmi was to suffer intense pain. The T-cell treatment she received succeeded in ridding her body of the tumors - but ultimately at the price of her life. Still, I do not regret having consented to the treatment (I’ll write more about that in my next post); at least during her last six months in this world she was out of the clutches of the monstrous pain that she described so eloquently in her poetry.
Saturday, July 09, 2005
Purpose
June 23, 2000
This morning Timmi finished her last "internal" Bagrut (for those of you who are non-Israelis, those are matriculation exams taken during and at the end of high school). So she has completed her exams in
Literature, Theater, Hebrew Language and possibly Bible (we have to see whether the units she took last year can stand on their own). This means that next year she will need to take exams in Math, English, History and
Citizenship (and maybe Bible) in order to get her certificate. Luckily, in Israel one can always make up and it's not held against you when applying to University.
Her physical condition continues to improve; she once again reduced the dose of her painkilling patches without that resulting in added pain, so it seems that the tumors are continuing to shrink. And she still does not have difficult side-effects from the GVH, though she does have some discomfort apparently from going off the steroids she was taking. If things continue in the present direction, we will be very happy.
Going off the steroids is mostly good, though, because she is sleeping better, her puffiness from fluid retention is going down (too slowly for her taste but still going down) and her mood is gradually improving - still up and down but with more "up" than before.
I can't wait for next week's vacation. We are leaving on Monday and returning on Thursday - three nights away! Lisa is returning from abroad Monday morning, so she and Shari will between them keep things running at home. And because Timmi is in relatively good shape, we can go with a clear conscience. We are very grateful indeed for this gift.
Shabbat Shalom to all.
Love,
Sara
July 9, 2005
There seems to be a human need to direct our actions toward some purpose. This need grows within us as we grow. As children, we’re content to take each day as it came, hoping and trying to have as much fun as we can that day but not really giving much thought to long-term goals. As we mature, we begin to think about the future. Even if we don’t consciously think about it very often, the question, “Where am I going?” preoccupies us increasingly as we get older. Eventually, we get to the point where life seems meaningless without a sense of purpose; that sense becomes so central to our being that without it we may well despair.
During the entire course of Timmi’s illness, she was determined to live as normal a life as possible. And, like all adolescents, she gave a great deal of thought to her long-term future. The future could be short-term, as when she meticulously planned activities for her Scouts group. It could be long-term, as when she debated with herself whether she wanted to be a doctor, a writer or a theater director. Or it could be medium-term, as when she needed to get through a prolonged and uncomfortable treatment for her leukemia, in order to resume her normal life afterwards.
This sense of purpose fueled Timmi’s will to participate as fully as she could in school activities even after her cancer returned. I’ve already written of her performance in her drama class’s production just before Passover (see “The High Point of a Life,” April 2005). She came to school whenever she could manage it physically, always putting on her makeup, dressing carefully and arranging her wig so as to look her best. She refused to let her physical condition limit her any more than the absolute minimum. One of her friends told me that when some of the friend’s paintings were exhibited in the 12th-grade art show in the school basement, Timmi insisted on slowly and painfully walking down the stairs to the exhibition, and took the time to look carefully and comment on each painting.
Timmi chose some school subjects on which to concentrate (a full course of study was out of the question by twelfth grade), and did as much as her condition allowed. And at the end of the year, she took as many matriculation exams as she possibly could, even when she was hospitalized for treatment. I can see her now, sitting on her hospital bed, legs crossed, concentrating on writing her final exam in Literature. She was not one to go easy on herself; if she had set a goal, she was going to attain it.
I believe it was Timmi’s sense of purpose that kept her going. As long as she was working toward her aims, she was able to push herself beyond what should otherwise have been the limits of her energy. I also believe that it was due to her determined activity that her physical condition kept improving as she neared the end of high school.
After she finished that last exam, though, when there were no more classes to attend and no more projects to complete, Timmi was left adrift with no clear direction. Her schoolmates were preparing to go into the army or national service, neither of which was an option for her. She could have begun studying on her own in order to take the exams she needed to in order to complete her matriculation certificate. But this goal was no longer part of the larger context of a normal life for a girl her age. Soon after finishing high school, she suffered the last, massive relapse that was ultimately the beginning of the end that came half a year later.
For a long time after Timmi died, I lost much of my own sense of purpose. Were it not for my children, who needed me, I don’t know how I would have been able to go on. It was only for them, and for Don, that I found the strength to get out of bed every morning. But as hard as it was, I did get out of bed every day, and never sank into the bottomless depression that beckoned me.
Recently I’ve read more than one book written by bereaved parents, met a bereaved mother whom I hadn’t known, and heard still other parents' stories. Of course, many of my struggles are similar to theirs, and the great part of what I hear and read resonates with me. But what also strikes me is that – incredible as it seems to me – I am in a somewhat better place today, almost five years after Timmi left this world, than many mothers who lost their children many more years ago. I read and hear of mothers who did not get out of bed for months after their children's deaths, mothers who since their children died have been unable to initiate anything new in their lives, and mothers who will not accept comfort or companionship to this day. I am not, thank God, in any of those positions, even though the pain is still with me and (I believe) will always remain with me. Timmi’s illness and death have fueled in me a desire to help other families who are going through experiences similar to mine, and have been the impetus for a mid-life career change. I have partly made my way back to "normal" human society, and can once again enjoy friendships and other relationships. I’ve even made several new friends here in New York, whom I look forward to seeing again next summer.
There may be many reasons for this. The early traumas of my life taught me how to separate myself from my pain in order to go on living. I belong to an incredibly supportive religious community. I also think that Israeli society is, to my great sorrow, familiar with the reality that children sometimes die; every time a child or young person dies in the army or in a terror attack, every Israeli feels a small part of the loss. I see now that the “wall” of which I have written in previous posts, which separates bereaved parents from everyone else, is at least a bit lower in Israel than in the United States or, probably, elsewhere in the Western world. I've also had the advantage of excellent therapy, which is readily available in Israel for bereaved parents.
But I also believe that my ongoing recovery is also due to my belief that God put on this Earth for a reason. Although I can’t understand why I have suffered, I can at the very least try to give my suffering meaning. I can transform the agony of losing my child into an intensified appreciation of just how precious my children have always been, and remain, to me. I can use my experience of pain to help other people who are also hurting. And, perhaps, by writing of my journey, I can give hope to others who, as I did in the aftermath of Timmi's loss, can see no road ahead of them other than the bleak prospect of life as a bereaved parent.
I pray that all of us will discover within ourselves the purpose in life with which God has blessed us, and the strength to do our utmost to fulfill it.
This morning Timmi finished her last "internal" Bagrut (for those of you who are non-Israelis, those are matriculation exams taken during and at the end of high school). So she has completed her exams in
Literature, Theater, Hebrew Language and possibly Bible (we have to see whether the units she took last year can stand on their own). This means that next year she will need to take exams in Math, English, History and
Citizenship (and maybe Bible) in order to get her certificate. Luckily, in Israel one can always make up and it's not held against you when applying to University.
Her physical condition continues to improve; she once again reduced the dose of her painkilling patches without that resulting in added pain, so it seems that the tumors are continuing to shrink. And she still does not have difficult side-effects from the GVH, though she does have some discomfort apparently from going off the steroids she was taking. If things continue in the present direction, we will be very happy.
Going off the steroids is mostly good, though, because she is sleeping better, her puffiness from fluid retention is going down (too slowly for her taste but still going down) and her mood is gradually improving - still up and down but with more "up" than before.
I can't wait for next week's vacation. We are leaving on Monday and returning on Thursday - three nights away! Lisa is returning from abroad Monday morning, so she and Shari will between them keep things running at home. And because Timmi is in relatively good shape, we can go with a clear conscience. We are very grateful indeed for this gift.
Shabbat Shalom to all.
Love,
Sara
July 9, 2005
There seems to be a human need to direct our actions toward some purpose. This need grows within us as we grow. As children, we’re content to take each day as it came, hoping and trying to have as much fun as we can that day but not really giving much thought to long-term goals. As we mature, we begin to think about the future. Even if we don’t consciously think about it very often, the question, “Where am I going?” preoccupies us increasingly as we get older. Eventually, we get to the point where life seems meaningless without a sense of purpose; that sense becomes so central to our being that without it we may well despair.
During the entire course of Timmi’s illness, she was determined to live as normal a life as possible. And, like all adolescents, she gave a great deal of thought to her long-term future. The future could be short-term, as when she meticulously planned activities for her Scouts group. It could be long-term, as when she debated with herself whether she wanted to be a doctor, a writer or a theater director. Or it could be medium-term, as when she needed to get through a prolonged and uncomfortable treatment for her leukemia, in order to resume her normal life afterwards.
This sense of purpose fueled Timmi’s will to participate as fully as she could in school activities even after her cancer returned. I’ve already written of her performance in her drama class’s production just before Passover (see “The High Point of a Life,” April 2005). She came to school whenever she could manage it physically, always putting on her makeup, dressing carefully and arranging her wig so as to look her best. She refused to let her physical condition limit her any more than the absolute minimum. One of her friends told me that when some of the friend’s paintings were exhibited in the 12th-grade art show in the school basement, Timmi insisted on slowly and painfully walking down the stairs to the exhibition, and took the time to look carefully and comment on each painting.
Timmi chose some school subjects on which to concentrate (a full course of study was out of the question by twelfth grade), and did as much as her condition allowed. And at the end of the year, she took as many matriculation exams as she possibly could, even when she was hospitalized for treatment. I can see her now, sitting on her hospital bed, legs crossed, concentrating on writing her final exam in Literature. She was not one to go easy on herself; if she had set a goal, she was going to attain it.
I believe it was Timmi’s sense of purpose that kept her going. As long as she was working toward her aims, she was able to push herself beyond what should otherwise have been the limits of her energy. I also believe that it was due to her determined activity that her physical condition kept improving as she neared the end of high school.
After she finished that last exam, though, when there were no more classes to attend and no more projects to complete, Timmi was left adrift with no clear direction. Her schoolmates were preparing to go into the army or national service, neither of which was an option for her. She could have begun studying on her own in order to take the exams she needed to in order to complete her matriculation certificate. But this goal was no longer part of the larger context of a normal life for a girl her age. Soon after finishing high school, she suffered the last, massive relapse that was ultimately the beginning of the end that came half a year later.
For a long time after Timmi died, I lost much of my own sense of purpose. Were it not for my children, who needed me, I don’t know how I would have been able to go on. It was only for them, and for Don, that I found the strength to get out of bed every morning. But as hard as it was, I did get out of bed every day, and never sank into the bottomless depression that beckoned me.
Recently I’ve read more than one book written by bereaved parents, met a bereaved mother whom I hadn’t known, and heard still other parents' stories. Of course, many of my struggles are similar to theirs, and the great part of what I hear and read resonates with me. But what also strikes me is that – incredible as it seems to me – I am in a somewhat better place today, almost five years after Timmi left this world, than many mothers who lost their children many more years ago. I read and hear of mothers who did not get out of bed for months after their children's deaths, mothers who since their children died have been unable to initiate anything new in their lives, and mothers who will not accept comfort or companionship to this day. I am not, thank God, in any of those positions, even though the pain is still with me and (I believe) will always remain with me. Timmi’s illness and death have fueled in me a desire to help other families who are going through experiences similar to mine, and have been the impetus for a mid-life career change. I have partly made my way back to "normal" human society, and can once again enjoy friendships and other relationships. I’ve even made several new friends here in New York, whom I look forward to seeing again next summer.
There may be many reasons for this. The early traumas of my life taught me how to separate myself from my pain in order to go on living. I belong to an incredibly supportive religious community. I also think that Israeli society is, to my great sorrow, familiar with the reality that children sometimes die; every time a child or young person dies in the army or in a terror attack, every Israeli feels a small part of the loss. I see now that the “wall” of which I have written in previous posts, which separates bereaved parents from everyone else, is at least a bit lower in Israel than in the United States or, probably, elsewhere in the Western world. I've also had the advantage of excellent therapy, which is readily available in Israel for bereaved parents.
But I also believe that my ongoing recovery is also due to my belief that God put on this Earth for a reason. Although I can’t understand why I have suffered, I can at the very least try to give my suffering meaning. I can transform the agony of losing my child into an intensified appreciation of just how precious my children have always been, and remain, to me. I can use my experience of pain to help other people who are also hurting. And, perhaps, by writing of my journey, I can give hope to others who, as I did in the aftermath of Timmi's loss, can see no road ahead of them other than the bleak prospect of life as a bereaved parent.
I pray that all of us will discover within ourselves the purpose in life with which God has blessed us, and the strength to do our utmost to fulfill it.
Monday, July 04, 2005
An Open Invitation
I would love to hear from my readers, even those I don't know personally. I especially invite other bereaved parents who may have been following my blog to contact me; I want to hear your stories also. According to my limited understanding, only other bloggers can leave comments in the "Comments" section below the blog text. However, you can email me by using the link that appears below my profile on the right-hand side of the page.
All the best,
Sara
All the best,
Sara
Marathons
June 17, 2000
I know I left you all in suspense (unless I happened to see you personally) about Timmi's trip to London. Well, it wasn't terrible but it wasn't worth it either. Unfortunately, the organizers of the trip, a secular group from the Tel Aviv area, not only failed to take account of the needs of religious kids but nonetheless very vigorously convinced Timmi to join the trip anyway. They actually gave her a hard time about missing the plane and not eating the unkosher food! They were aggressively defensive about the subject, for example asking Timmi why she wasn't eating particular food and when she said because it wasn't kosher, replying, "Well, no one said it would be kosher", or saying "What, you expected an entire planeload of people to wait just for you?" (after she was told by the organizers to come as soon as Shabbat went out and that they would delay the plane as they had done in the past). These are only two examples of incidents that happened again and again during the trip. Because Timmi is quite sensitive to this kind of thing, it definitely lessened her enjoyment of the trip. However, she does have some good memories, most notably of the stage production of "The Lion King", which totally bowled her over. She is looking forward to getting back to London under better circumstances.
Some good news is that she has removed another pain patch, which may well be a sign that her tumors are indeed shrinking. Also, the GVH is still not too strong, so if things stabilize around where they are we will be in pretty good shape. Her mood is still uneven, dependent very much on the circumstances of the moment. It's sometimes overwhelming dealing with family dynamics, as normal sibling sparring takes on dimensions way above and beyond the seemingly petty cause for the conflict, and as everyone's emotional state becomes more fragile with the wearing-down effect of the illness on Timmi herself and on all of the family.
Don and I are looking forward to a few days' vacation that a wonderful anonymous person from the community has offered us as a present. We're going very soon (a week from Monday), to take advantage of the fact that Timmi is in a relatively good place physically. We know from experience that although we fervently hope things will stay this way or even improve, we can't make plans counting on that. We have reservations at Mitzpeh Yamim, a natural-health-spa type of place near Rosh Pina.* From my point of view, the present couldn't have come at a better time. I'm feeling better than I have in the past month, physically and emotionally, so I'll be able to take advantage of the trip, but still feel desperately like I need a rest. (Sometimes I feel like the proverbial woman in the transition stage of labor, who looks at the other people around her and says, "OK, I've had enough - I'm going home and the rest of you can finish this.)
Shabbat Shalom to all.
Love,
Sara
* Rosh Pina – A town in Israel’s north.
July 4, 2005
Three weeks ago we celebrated Shavuot, the Jewish holiday that falls seven weeks after Passover. In Biblical times, Shavuot was an agricultural festival, at which the people brought offerings of the first fruits of the harvest. Jewish tradition tells us that Shavuot also marks the time of year that the Torah was given to us on Mount Sinai. Since the Jews were expelled from their land after the Romans destroyed the Temple, we have emphasized this second aspect of the holiday. Observant Jews stay up for an all-night marathon of Torah study, in memory of the vigil held by the Children of Israel at Mount Sinai in anticipation of receiving God’s word. In order to do this, we need to keep our energy up by force of will, and push through our tiredness to the morning’s sunrise. And every year we discover anew that we have within ourselves a source of strength upon which to draw when we seem to have run out. I believe it is God that keeps replenishing that source.
Sometimes it seems as if my own life has consisted of one marathon after another. When I first moved to Israel with Don and three babies, for example, it took two long, exhausting years before we were living a “normal” lifestyle. After I started my year and a half-long legal internship in Tel Aviv, it felt like forever before I received my license and was freed from the drudgery that in the United States would be the province of a legal secretary. During my career as a lawyer, there were periods during which I worked until the early morning hours, several times a week - during one of these stretches, I was in my last trimester of pregnancy. Then there was the five-year period during which we moved four times, each time to a smaller apartment and twice with more children.
None of this, of course, compares to the six and a half years of Timmi’s illness, which was itself made up of successive mini-marathons. Immediately after her cancer was diagnosed, Timmi underwent six months of intensive chemo, then a bone marrow transplant, then the GVH* that resulted from the transplant. During Timmi’s remission, there were constant emotional crises to cope with – Timmi’s, her siblings’, and our own – as well as the lingering physical effects of her treatments. Then, of course, came the relapse, with its renewed treatments and crises. And then, Timmi’s slow and inexorable decline, her death, and its overwhelming emotional aftermath.
Many people have asked me how I managed to go on functioning in the face of the horror of seeing my child in agony, putting her through painful treatments, learning helplessly that her cancer returned despite everything she went through, and losing her. The fact is that many times I’ve felt as if I couldn’t continue.
But over the course of an unusually difficult life, God has always sent me someone or something to give me the strength to face the next set of challenges. After barely making it through elementary school as the scapegoat of an extremely cruel class, I was given the opportunity to go to an excellent high school,** where I made real friends for the first time in my life. Soon after my father died, I was fortunate enough to develop a few deep friendships that have lasted to this day. I left my stressful corporate law job after having my seventh child (enough!), without knowing where I would find my next job (and, indeed, if anyone would hire a mother of seven); as soon as I got home after informing my boss of my decision, the phone rang and I was offered the government job that I held for the next seven years.
And as impossible as it may have seemed, God also came through to help me through the worst of all crises - Timmi’s illness and death. Five years ago, for example, when I thought I might collapse from the strain of Timmi’s deteriorating condition and the accompanying family stress, that anonymous friend gave me the present of a vacation. The rest I got during those few days sustained me when shortly afterwards she suffered her last, massive relapse. And, most amazingly, three years ago on Shavuot(!), a friend who is a spiritual healer saw Timmi as we sat together in synagogue, and gave me a message from her. This encounter, which I’ve described at greater length in “Healing” (August 2004), marked the pointed at which I began to emerge from the deep depression that had gripped me for more than a year.
Just now, I’m running yet another marathon. For the first summer of my MSW program, I’m taking six courses – each of which is normally given over a fifteen-week semester – in six weeks. As soon as I finish one paper, the next is due (I need to hand in seven serious papers over the remaining three and a half weeks of the summer program!). This would be hard enough under normal circumstances, but I must also contend with the energy crashes that have plagued me periodically since Timmi died. When these crashes seize me, I feel as if I’ve come up against a wall that’s preventing me from moving forward – or as if my tank is completely empty and there’s no “fuel” left to go on. Just before starting this program, I was still crashing so regularly that I wasn’t able to work outside my home more than five hours a day. (Now I have six hours a day of classes alone, without homework and papers.) Even worse than the crashes themselves (which haven’t been so bad so far) is my fear that I'll crash in a major way and be unable to finish the program. This anxiety can itself be enough to paralyze me. If I fail to finish the program, what will I do with my life? The only meaningful future I can really imagine for myself is one in which I help other families to remain whole as they go through the hell of a child’s life-threatening illness.
In order to combat this anxiety, I draw strength from the Shavuot custom of studying through the night, which teaches me (among many other things) that we human beings are capable of pushing ourselves far beyond what may seem physically or emotionally possible at a given time, at least so long as we have faith that our efforts are in the service of a greater cause – that the Torah is waiting for us at the end of our vigil.
God has not failed me yet; there is no reason to believe that He'll fail me now or any time in the future. I may tire along the way, or stumble, or even crash. But if I look hard enough, I believe, I will always discover that He has given me strength to pick myself up and finish each marathon – and go on to the next.
*GVH – Graft Versus Host Disease, in which the transplanted bone marrow attacks the patient’s body.
** Hunter High School, a city-wide, selective public school for girls in New York City.
I know I left you all in suspense (unless I happened to see you personally) about Timmi's trip to London. Well, it wasn't terrible but it wasn't worth it either. Unfortunately, the organizers of the trip, a secular group from the Tel Aviv area, not only failed to take account of the needs of religious kids but nonetheless very vigorously convinced Timmi to join the trip anyway. They actually gave her a hard time about missing the plane and not eating the unkosher food! They were aggressively defensive about the subject, for example asking Timmi why she wasn't eating particular food and when she said because it wasn't kosher, replying, "Well, no one said it would be kosher", or saying "What, you expected an entire planeload of people to wait just for you?" (after she was told by the organizers to come as soon as Shabbat went out and that they would delay the plane as they had done in the past). These are only two examples of incidents that happened again and again during the trip. Because Timmi is quite sensitive to this kind of thing, it definitely lessened her enjoyment of the trip. However, she does have some good memories, most notably of the stage production of "The Lion King", which totally bowled her over. She is looking forward to getting back to London under better circumstances.
Some good news is that she has removed another pain patch, which may well be a sign that her tumors are indeed shrinking. Also, the GVH is still not too strong, so if things stabilize around where they are we will be in pretty good shape. Her mood is still uneven, dependent very much on the circumstances of the moment. It's sometimes overwhelming dealing with family dynamics, as normal sibling sparring takes on dimensions way above and beyond the seemingly petty cause for the conflict, and as everyone's emotional state becomes more fragile with the wearing-down effect of the illness on Timmi herself and on all of the family.
Don and I are looking forward to a few days' vacation that a wonderful anonymous person from the community has offered us as a present. We're going very soon (a week from Monday), to take advantage of the fact that Timmi is in a relatively good place physically. We know from experience that although we fervently hope things will stay this way or even improve, we can't make plans counting on that. We have reservations at Mitzpeh Yamim, a natural-health-spa type of place near Rosh Pina.* From my point of view, the present couldn't have come at a better time. I'm feeling better than I have in the past month, physically and emotionally, so I'll be able to take advantage of the trip, but still feel desperately like I need a rest. (Sometimes I feel like the proverbial woman in the transition stage of labor, who looks at the other people around her and says, "OK, I've had enough - I'm going home and the rest of you can finish this.)
Shabbat Shalom to all.
Love,
Sara
* Rosh Pina – A town in Israel’s north.
July 4, 2005
Three weeks ago we celebrated Shavuot, the Jewish holiday that falls seven weeks after Passover. In Biblical times, Shavuot was an agricultural festival, at which the people brought offerings of the first fruits of the harvest. Jewish tradition tells us that Shavuot also marks the time of year that the Torah was given to us on Mount Sinai. Since the Jews were expelled from their land after the Romans destroyed the Temple, we have emphasized this second aspect of the holiday. Observant Jews stay up for an all-night marathon of Torah study, in memory of the vigil held by the Children of Israel at Mount Sinai in anticipation of receiving God’s word. In order to do this, we need to keep our energy up by force of will, and push through our tiredness to the morning’s sunrise. And every year we discover anew that we have within ourselves a source of strength upon which to draw when we seem to have run out. I believe it is God that keeps replenishing that source.
Sometimes it seems as if my own life has consisted of one marathon after another. When I first moved to Israel with Don and three babies, for example, it took two long, exhausting years before we were living a “normal” lifestyle. After I started my year and a half-long legal internship in Tel Aviv, it felt like forever before I received my license and was freed from the drudgery that in the United States would be the province of a legal secretary. During my career as a lawyer, there were periods during which I worked until the early morning hours, several times a week - during one of these stretches, I was in my last trimester of pregnancy. Then there was the five-year period during which we moved four times, each time to a smaller apartment and twice with more children.
None of this, of course, compares to the six and a half years of Timmi’s illness, which was itself made up of successive mini-marathons. Immediately after her cancer was diagnosed, Timmi underwent six months of intensive chemo, then a bone marrow transplant, then the GVH* that resulted from the transplant. During Timmi’s remission, there were constant emotional crises to cope with – Timmi’s, her siblings’, and our own – as well as the lingering physical effects of her treatments. Then, of course, came the relapse, with its renewed treatments and crises. And then, Timmi’s slow and inexorable decline, her death, and its overwhelming emotional aftermath.
Many people have asked me how I managed to go on functioning in the face of the horror of seeing my child in agony, putting her through painful treatments, learning helplessly that her cancer returned despite everything she went through, and losing her. The fact is that many times I’ve felt as if I couldn’t continue.
But over the course of an unusually difficult life, God has always sent me someone or something to give me the strength to face the next set of challenges. After barely making it through elementary school as the scapegoat of an extremely cruel class, I was given the opportunity to go to an excellent high school,** where I made real friends for the first time in my life. Soon after my father died, I was fortunate enough to develop a few deep friendships that have lasted to this day. I left my stressful corporate law job after having my seventh child (enough!), without knowing where I would find my next job (and, indeed, if anyone would hire a mother of seven); as soon as I got home after informing my boss of my decision, the phone rang and I was offered the government job that I held for the next seven years.
And as impossible as it may have seemed, God also came through to help me through the worst of all crises - Timmi’s illness and death. Five years ago, for example, when I thought I might collapse from the strain of Timmi’s deteriorating condition and the accompanying family stress, that anonymous friend gave me the present of a vacation. The rest I got during those few days sustained me when shortly afterwards she suffered her last, massive relapse. And, most amazingly, three years ago on Shavuot(!), a friend who is a spiritual healer saw Timmi as we sat together in synagogue, and gave me a message from her. This encounter, which I’ve described at greater length in “Healing” (August 2004), marked the pointed at which I began to emerge from the deep depression that had gripped me for more than a year.
Just now, I’m running yet another marathon. For the first summer of my MSW program, I’m taking six courses – each of which is normally given over a fifteen-week semester – in six weeks. As soon as I finish one paper, the next is due (I need to hand in seven serious papers over the remaining three and a half weeks of the summer program!). This would be hard enough under normal circumstances, but I must also contend with the energy crashes that have plagued me periodically since Timmi died. When these crashes seize me, I feel as if I’ve come up against a wall that’s preventing me from moving forward – or as if my tank is completely empty and there’s no “fuel” left to go on. Just before starting this program, I was still crashing so regularly that I wasn’t able to work outside my home more than five hours a day. (Now I have six hours a day of classes alone, without homework and papers.) Even worse than the crashes themselves (which haven’t been so bad so far) is my fear that I'll crash in a major way and be unable to finish the program. This anxiety can itself be enough to paralyze me. If I fail to finish the program, what will I do with my life? The only meaningful future I can really imagine for myself is one in which I help other families to remain whole as they go through the hell of a child’s life-threatening illness.
In order to combat this anxiety, I draw strength from the Shavuot custom of studying through the night, which teaches me (among many other things) that we human beings are capable of pushing ourselves far beyond what may seem physically or emotionally possible at a given time, at least so long as we have faith that our efforts are in the service of a greater cause – that the Torah is waiting for us at the end of our vigil.
God has not failed me yet; there is no reason to believe that He'll fail me now or any time in the future. I may tire along the way, or stumble, or even crash. But if I look hard enough, I believe, I will always discover that He has given me strength to pick myself up and finish each marathon – and go on to the next.
*GVH – Graft Versus Host Disease, in which the transplanted bone marrow attacks the patient’s body.
** Hunter High School, a city-wide, selective public school for girls in New York City.
Sunday, June 19, 2005
The Long Version and the Short Version
June 8, 2000
Timmi came back from London this morning. She was so sleepy that she couldn't tell me, really, how the trip was; my impression was that there were good things and hard things, and how she remembers the experience will be dependent on her mood at the time of recollection. I do hope the good things outweighed the hard things, especially in light of the effort we made to get her there and back.
I mentioned in my last message that the group's flight had been scheduled to take off just under an hour after Shabbat went out. The organizers assured us that if Don and Timmi left right after the end of Shabbat, they would be able to delay the flight so that Timmi could be rushed through check-in and board the plane. Well, that was optimistic. The flight was not delayed, and Timmi missed it. (This is after our car broke down on Friday and just before Shabbat Don had to find a car to borrow to take Timmi to the airport - the G’s were kind enough to lend their car, though they were planning on going out after Shabbat. And after I rushed to the hospital an hour before Shabbat to get some medical equipment that we normally have at home for Timmi's use but that she had not noticed was used up.) So she and Tehilla checked in "early" Saturday night and took a cab to the airport for a flight the next morning.
This morning, the group arrived at 5:40, and Don got up at 5:00 to go get her. Halfway between Jerusalem and the airport our car, which had in the meantime been in and come out of the garage, broke down again. He got home only four hours later; in the meantime, Timmi called home to see what was happening (she waited for some time because she did not get the message I left at the airport) and ended up taking a cab again. As I said, she got home very tired and went to sleep right away.
While she was in London, Mike G's brother Joe sent Timmi all kinds of kosher food, when he heard from Barbara and Mike about the food problem. Not having yet spoken to Timmi about her trip, I don't know how much of the food actually reached her, with all the touring that the group did, but it was exceedingly sweet of him to do this.
My own health was up and down this week; in general I am feeling emotionally quite a bit better and physically somewhat better. I have been taking the Shiitake mushroom extract that we got from France for Timmi and which helped her get through her chemo a year ago. Maybe that's the reason for the improvement, maybe not. You know how these things go.
I have decided to try to get back into some kind of a professional life. Although what I really need is to get out of the house and work in a separate space (with my own desk etc.), most preferably, of course, in mediation, I have decided in the meantime to do legal translations. I hated doing these when I first did them years ago - writing by myself is infinitely better than translating someone else's writing - but I am quite good at it and it is a way to get some professional activity into my life and make some money (not much so far, but better than nothing). Also, it is flexible, and doing it during the morning hours isn't nearly as bad as in the evening after a full day of work. After not working for so long, it's even enjoyable to some degree.
I wish all of you a happy Shavuot* and Shabbat Shalom. Though I don't always answer your individual messages, I do read them and your good wishes and prayers mean a great deal to me.
*Shavuot – the Festival of Weeks, which falls seven weeks after Passover and celebrates the giving of the Torah on Mount Sinai.
June 18, 2005
I’ve been telling this story for years now. From the beginning, I’ve had the problem of having to decide how much detail to tell to whom, and how to relate the detail that I do decide to include. Even while Timmi was alive, and it was only a matter of describing the most recent developments, I often found myself at a loss for words when people asked me what was happening – not for lack of events to describe, but because I couldn’t decide how to answer. Should I relate only to the bare facts, or is my listener interested in hearing more detail? Should my tone be matter-of-fact, or should I allow myself to express my feelings? Giving a quick, dry version might seem dismissive or unfeeling; too much detail might bore my listener; too much emotion would almost certainly overwhelm me and might well overwhelm my listener as well. It was partly because of these difficulties that I started sending written updates to the members of my community. That way, at least, I could write as much or as little detail as suited me at the time, and I wouldn’t have to deal with people’s (usually awkward) reactions.
I’ve developed many different ways of recounting this saga. But none seems sufficient, none seems accurate enough. When a friend came to Israel recently whom I hadn’t seen in many years, it was clear that when she asked me to tell her Timmi’s – and our family’s – story, she really was interested in hearing all of it. I was glad to have someone who truly wanted to listen, so I tried to give her the full version. I started at the beginning, with the first symptoms and the six months it took to diagnose Timmi’s leukemia. I went through the story step by step – the treatments, the transplants, the side effects and secondary problems, the emotional consequences… I wanted so very much to paint a full picture. But at a certain point I had to speed up and finish quickly, because my heart started beating out of rhythm – very fast, then very slow – and I realized that the stress of reliving the narrative through its telling was taking too heavy a toll on me.
On the other hand, telling too little also has its price. Since I’ve been here in New York, I’ve met many new people, both in my MSW program and in the neighborhood in which I’m staying (Manhattan’s Upper West Side). At school, the question most often asked of a first-year student – both by the other students and by the teachers – is: “Why did you decide to become a social worker?” People outside of school often ask this as well. To answer truthfully, I would need to explain how my decision grew out of a complex process that was precipitated by Timmi’s illness and death. But these are relatively casual conversations; there’s no time to go into any kind of detail. So I’ve created a short version of the narrative, which can be told in five minutes or less. I’ve been relating this version over and over since I arrived here; I must have told it 15 or 20 times in the last three weeks alone. But repeating this abbreviated version – the bare facts, without the emotional content – time and again makes me feel numb. How can I speak of Timmi’s illness and death as if they were facts like any other? I can feel this constant repetition separating me farther from my emotions than I want to be. It feels dry, heavy, and deadened.
Another quandary arises when people ask me how many children I have. The question is so simple for most people – the obvious one to ask a person my age – but a minefield for me. I certainly can’t say “six,” and saying “seven” gives the wrong impression. So I recount the shortest version of all: “I raised seven children, but now have six; my daughter Timmi died of cancer about four and a half years ago.” Again, I have a choice; I can break down and cry, or I can keep my upper lip stiff and cut myself off from my emotions. Just about always, I choose the latter. Telling the basic facts with no show of emotion on my own part discourages my listeners from getting over-emotional, which I find very hard to deal with. At the same time, I would be even more upset if, upon hearing that I had a child who died, my listener failed to react at all. The short version makes it easier for me if my listeners display no emotion after hearing my story – after all, I’m the one who has st the dry tone. Also, it’s not appropriate to get “touch-feely” with every person and in every situation; quite the opposite is true. I don’t need every first conversation with a new acquaintance to turn heavy and mournful. So I cut off my feelings and pay the price. And that price is very high. I think that one of the reasons I can’t cry about Timmi nearly enough as much as I feel I need to is that I’ve gotten used making sure to keep my own and others’ eyes dry while I tell my tale.
You may well ask, so why get into it at all? Why not say, “I’m doing this MSW program because for years I’ve wanted to become a psychotherapist and this is the most efficient way to do it”? And why not respond, when asked, “I have seven children”? (As I mentioned, saying I have six children is out of the question.) Both answers are true, after all, and don’t pull me into a conversation about Timmi.
The fact is that I feel a need – almost a compulsion – when I meet someone new to tell her of my beautiful, lost daughter. Talking to someone, without his knowing that I once had a daughter who is no longer in this world, simply feels like a lie. This does not apply absolutely all the time, of course. For example, I love hearing about the lives of cab drivers – it gives me a chance to find out about people I usually wouldn’t meet. So I sometimes ask how many children my driver has. If, in return, he asks me how many children I have, my answer will be a simple “seven.”
But when I know I’m going to meet a person more than once, and especially if I’m going to have some kind of an ongoing relationship with her (even in a superficial relationship such as that of fellow-student or casual social acquaintance), I feel an overwhelming need to bring up the subject of Timmi. My sense of self is now so caught up in my bereavement that I feel as if I’m introducing not myself, but another person, if I fail to mention it. What makes this especially hard is that since Timmi died I’ve felt very uncomfortable in superficial conversations. I get impatient and frustrated in the absence of meaningful communication; only when Timmi's memory is part of the framework of a conversation do I feel that my interlocutor and I are communicating in any true way.
So, you may ask again, why do I need to have a meaningful connection with every single person I meet? Because I feel so cut off from the rest of the world that I feel compelled to explore every potential way of reconnecting. Like other bereaved parents, I feel as if a wall has been erected between myself and the rest of humanity. It’s so lonely here that I must keep trying to create any possible opening that will allow true contact between me and those on the other side. The wall isn’t as thick as it used to be, and there are now a few openings that let in some light. But it’s still there, and I’m still very lonely.
Telling the whole truth is also the only way to find those people who can most understand me – other bereaved parents. Last week, I was invited for a Shavuot meal by a woman I’d met the week before at the home of some friends from Israel. When her other guests began asking me the usual questions, I answered with the short, dry version of my story. To my surprise, Judy (my hostess) began speaking of the terrible difficulties faced by the siblings of very ill children. When I asked if she had personal experience with such problems, she revealed that she’d had a son who died of a brain tumor eleven years ago, after thirteen years of illness. She and I were then able to share and connect in a way that would have been impossible had I not brought up the subject. Judy herself wouldn’t have mentioned her own loss, because her way of dealing with the dilemma of what, how much and to whom to tell her story is almost never to talk about it. Now I feel a bond with her, and I hope she feels one with me. I (we?) feel just a tiny bit less alone in the world.
Perhaps most important, speaking of Timmi is one way of keeping her memory alive. One of the students in my program told me that when I relate my story, she feels as if Timmi is present and part of the conversation. I told her that nothing she said could have made me happier.
If people would let me – or, more accurately, if I would allow myself – I could easily speak all day, every day, about Timmi, her journey through a fatal illness, and my family’s and my own journey. The full version of our story would take a lifetime to relate. But that would leave us in the same place forever. We do need to move ahead in our lives; I know Timmi wouldn’t want us to spend the rest of our time on Earth incapable of relating to anything but her loss. The challenge is to find a balance in which we move forward but at the same time hold within us our precious memories, and to allow those memories to inform our lives but not totally overwhelm them.
And so I will continue to relate my story, sometimes in longer versions and sometimes in shorter versions, in search of that balance and in the hope of creating true relationships - relationships in which I may be be my authentic self and others may bond to that true me. And my most fervent hope is that for so long as I continue to tell our tale, both these others and I will continue to feel the presence of Timmi’s spirit.
Timmi came back from London this morning. She was so sleepy that she couldn't tell me, really, how the trip was; my impression was that there were good things and hard things, and how she remembers the experience will be dependent on her mood at the time of recollection. I do hope the good things outweighed the hard things, especially in light of the effort we made to get her there and back.
I mentioned in my last message that the group's flight had been scheduled to take off just under an hour after Shabbat went out. The organizers assured us that if Don and Timmi left right after the end of Shabbat, they would be able to delay the flight so that Timmi could be rushed through check-in and board the plane. Well, that was optimistic. The flight was not delayed, and Timmi missed it. (This is after our car broke down on Friday and just before Shabbat Don had to find a car to borrow to take Timmi to the airport - the G’s were kind enough to lend their car, though they were planning on going out after Shabbat. And after I rushed to the hospital an hour before Shabbat to get some medical equipment that we normally have at home for Timmi's use but that she had not noticed was used up.) So she and Tehilla checked in "early" Saturday night and took a cab to the airport for a flight the next morning.
This morning, the group arrived at 5:40, and Don got up at 5:00 to go get her. Halfway between Jerusalem and the airport our car, which had in the meantime been in and come out of the garage, broke down again. He got home only four hours later; in the meantime, Timmi called home to see what was happening (she waited for some time because she did not get the message I left at the airport) and ended up taking a cab again. As I said, she got home very tired and went to sleep right away.
While she was in London, Mike G's brother Joe sent Timmi all kinds of kosher food, when he heard from Barbara and Mike about the food problem. Not having yet spoken to Timmi about her trip, I don't know how much of the food actually reached her, with all the touring that the group did, but it was exceedingly sweet of him to do this.
My own health was up and down this week; in general I am feeling emotionally quite a bit better and physically somewhat better. I have been taking the Shiitake mushroom extract that we got from France for Timmi and which helped her get through her chemo a year ago. Maybe that's the reason for the improvement, maybe not. You know how these things go.
I have decided to try to get back into some kind of a professional life. Although what I really need is to get out of the house and work in a separate space (with my own desk etc.), most preferably, of course, in mediation, I have decided in the meantime to do legal translations. I hated doing these when I first did them years ago - writing by myself is infinitely better than translating someone else's writing - but I am quite good at it and it is a way to get some professional activity into my life and make some money (not much so far, but better than nothing). Also, it is flexible, and doing it during the morning hours isn't nearly as bad as in the evening after a full day of work. After not working for so long, it's even enjoyable to some degree.
I wish all of you a happy Shavuot* and Shabbat Shalom. Though I don't always answer your individual messages, I do read them and your good wishes and prayers mean a great deal to me.
*Shavuot – the Festival of Weeks, which falls seven weeks after Passover and celebrates the giving of the Torah on Mount Sinai.
June 18, 2005
I’ve been telling this story for years now. From the beginning, I’ve had the problem of having to decide how much detail to tell to whom, and how to relate the detail that I do decide to include. Even while Timmi was alive, and it was only a matter of describing the most recent developments, I often found myself at a loss for words when people asked me what was happening – not for lack of events to describe, but because I couldn’t decide how to answer. Should I relate only to the bare facts, or is my listener interested in hearing more detail? Should my tone be matter-of-fact, or should I allow myself to express my feelings? Giving a quick, dry version might seem dismissive or unfeeling; too much detail might bore my listener; too much emotion would almost certainly overwhelm me and might well overwhelm my listener as well. It was partly because of these difficulties that I started sending written updates to the members of my community. That way, at least, I could write as much or as little detail as suited me at the time, and I wouldn’t have to deal with people’s (usually awkward) reactions.
I’ve developed many different ways of recounting this saga. But none seems sufficient, none seems accurate enough. When a friend came to Israel recently whom I hadn’t seen in many years, it was clear that when she asked me to tell her Timmi’s – and our family’s – story, she really was interested in hearing all of it. I was glad to have someone who truly wanted to listen, so I tried to give her the full version. I started at the beginning, with the first symptoms and the six months it took to diagnose Timmi’s leukemia. I went through the story step by step – the treatments, the transplants, the side effects and secondary problems, the emotional consequences… I wanted so very much to paint a full picture. But at a certain point I had to speed up and finish quickly, because my heart started beating out of rhythm – very fast, then very slow – and I realized that the stress of reliving the narrative through its telling was taking too heavy a toll on me.
On the other hand, telling too little also has its price. Since I’ve been here in New York, I’ve met many new people, both in my MSW program and in the neighborhood in which I’m staying (Manhattan’s Upper West Side). At school, the question most often asked of a first-year student – both by the other students and by the teachers – is: “Why did you decide to become a social worker?” People outside of school often ask this as well. To answer truthfully, I would need to explain how my decision grew out of a complex process that was precipitated by Timmi’s illness and death. But these are relatively casual conversations; there’s no time to go into any kind of detail. So I’ve created a short version of the narrative, which can be told in five minutes or less. I’ve been relating this version over and over since I arrived here; I must have told it 15 or 20 times in the last three weeks alone. But repeating this abbreviated version – the bare facts, without the emotional content – time and again makes me feel numb. How can I speak of Timmi’s illness and death as if they were facts like any other? I can feel this constant repetition separating me farther from my emotions than I want to be. It feels dry, heavy, and deadened.
Another quandary arises when people ask me how many children I have. The question is so simple for most people – the obvious one to ask a person my age – but a minefield for me. I certainly can’t say “six,” and saying “seven” gives the wrong impression. So I recount the shortest version of all: “I raised seven children, but now have six; my daughter Timmi died of cancer about four and a half years ago.” Again, I have a choice; I can break down and cry, or I can keep my upper lip stiff and cut myself off from my emotions. Just about always, I choose the latter. Telling the basic facts with no show of emotion on my own part discourages my listeners from getting over-emotional, which I find very hard to deal with. At the same time, I would be even more upset if, upon hearing that I had a child who died, my listener failed to react at all. The short version makes it easier for me if my listeners display no emotion after hearing my story – after all, I’m the one who has st the dry tone. Also, it’s not appropriate to get “touch-feely” with every person and in every situation; quite the opposite is true. I don’t need every first conversation with a new acquaintance to turn heavy and mournful. So I cut off my feelings and pay the price. And that price is very high. I think that one of the reasons I can’t cry about Timmi nearly enough as much as I feel I need to is that I’ve gotten used making sure to keep my own and others’ eyes dry while I tell my tale.
You may well ask, so why get into it at all? Why not say, “I’m doing this MSW program because for years I’ve wanted to become a psychotherapist and this is the most efficient way to do it”? And why not respond, when asked, “I have seven children”? (As I mentioned, saying I have six children is out of the question.) Both answers are true, after all, and don’t pull me into a conversation about Timmi.
The fact is that I feel a need – almost a compulsion – when I meet someone new to tell her of my beautiful, lost daughter. Talking to someone, without his knowing that I once had a daughter who is no longer in this world, simply feels like a lie. This does not apply absolutely all the time, of course. For example, I love hearing about the lives of cab drivers – it gives me a chance to find out about people I usually wouldn’t meet. So I sometimes ask how many children my driver has. If, in return, he asks me how many children I have, my answer will be a simple “seven.”
But when I know I’m going to meet a person more than once, and especially if I’m going to have some kind of an ongoing relationship with her (even in a superficial relationship such as that of fellow-student or casual social acquaintance), I feel an overwhelming need to bring up the subject of Timmi. My sense of self is now so caught up in my bereavement that I feel as if I’m introducing not myself, but another person, if I fail to mention it. What makes this especially hard is that since Timmi died I’ve felt very uncomfortable in superficial conversations. I get impatient and frustrated in the absence of meaningful communication; only when Timmi's memory is part of the framework of a conversation do I feel that my interlocutor and I are communicating in any true way.
So, you may ask again, why do I need to have a meaningful connection with every single person I meet? Because I feel so cut off from the rest of the world that I feel compelled to explore every potential way of reconnecting. Like other bereaved parents, I feel as if a wall has been erected between myself and the rest of humanity. It’s so lonely here that I must keep trying to create any possible opening that will allow true contact between me and those on the other side. The wall isn’t as thick as it used to be, and there are now a few openings that let in some light. But it’s still there, and I’m still very lonely.
Telling the whole truth is also the only way to find those people who can most understand me – other bereaved parents. Last week, I was invited for a Shavuot meal by a woman I’d met the week before at the home of some friends from Israel. When her other guests began asking me the usual questions, I answered with the short, dry version of my story. To my surprise, Judy (my hostess) began speaking of the terrible difficulties faced by the siblings of very ill children. When I asked if she had personal experience with such problems, she revealed that she’d had a son who died of a brain tumor eleven years ago, after thirteen years of illness. She and I were then able to share and connect in a way that would have been impossible had I not brought up the subject. Judy herself wouldn’t have mentioned her own loss, because her way of dealing with the dilemma of what, how much and to whom to tell her story is almost never to talk about it. Now I feel a bond with her, and I hope she feels one with me. I (we?) feel just a tiny bit less alone in the world.
Perhaps most important, speaking of Timmi is one way of keeping her memory alive. One of the students in my program told me that when I relate my story, she feels as if Timmi is present and part of the conversation. I told her that nothing she said could have made me happier.
If people would let me – or, more accurately, if I would allow myself – I could easily speak all day, every day, about Timmi, her journey through a fatal illness, and my family’s and my own journey. The full version of our story would take a lifetime to relate. But that would leave us in the same place forever. We do need to move ahead in our lives; I know Timmi wouldn’t want us to spend the rest of our time on Earth incapable of relating to anything but her loss. The challenge is to find a balance in which we move forward but at the same time hold within us our precious memories, and to allow those memories to inform our lives but not totally overwhelm them.
And so I will continue to relate my story, sometimes in longer versions and sometimes in shorter versions, in search of that balance and in the hope of creating true relationships - relationships in which I may be be my authentic self and others may bond to that true me. And my most fervent hope is that for so long as I continue to tell our tale, both these others and I will continue to feel the presence of Timmi’s spirit.
Thursday, June 02, 2005
To Share or Not to Share
June 2, 2000
This week we may be seeing some progress - Timmi has reduced the dose of her painkilling patches and has somewhat less pain than she did with the higher dose. So we hope that means that the tumors are shrinking. Also, she has some symptoms that may be indicative of GVH, which would be consistent with shrinking tumors. We hope the trend will continue, without her getting too much GVH as in the past.
She is greatly looking forward to her four-day trip to London this coming week, with the "Chaim" organization that does good things for kids with cancer. The only problem is that they will be eating only in non-kosher places, so Timmi is bringing lots of dry stuff with her. Also, the plane leaves one hour after Shabbat goes out, so Don will have to leave with her immediately on Saturday night, deliver her to a special place where someone will be waiting only for her, and the plane may also have to wait for her. All in all, very nice and well-meaning, but it's quite astonishing how some Israeli Jews can be so unaware of the constraints of religious people. But it does work out that she can go, so we're happy about that.
I have continued to be sick this week, to the point almost of physical/emotional collapse (I can't tell the difference), but have started feeling much better in the past couple of days.
Shabbat Shalom to all.
Love,
Sara
June 1, 2005
A week ago I flew from Israel to New York; today was registration and orientation for the MSW program I’m starting tomorrow.
On the plane, I sat next to a married couple who were on their way to Barcelona for a week. They must have been in their late twenties or early thirties, and were obviously very much in love. After they squeezed past me to get to their seats, the woman (I’ll call her Rona) took off her hat to reveal an almost completely bald head with some sparse, very short hair. At that point I also noticed how thin she was. Ah, I thought, she’s recently been through chemo, or radiation, or both.
My first impulse was to ask about her cancer – What kind? When did she discover it? – and about her treatment – For how long? At what hospital? Will she have to undergo additional treatment? I wanted to connect with her, to tell her that I know what she’s going through, and to express my fervent wishes for her full recovery. But then I thought again. Yes, I could have a sharing conversation with her, full of mutual empathy and understanding. I always get a great deal from conversations like that, and perhaps I could do something good for her as well. But any conversation in which we would share our common experience would also have to reveal the end of Timmi’s story. And that, I believe, is the last thing in the world a recovering cancer patient needs to hear.
I was strongly reminded then of an experience I had shortly after Timmi died. I was sitting in a coffee and sandwich bar in Jerusalem’s main mall when a woman brought in her daughter in a wheelchair. The girl was very thin, and wearing a hat over what was obviously a bald head. I wanted desperately to approach them and compare notes – if only to ask who the girls’ doctor is, maybe trade hospital stories. And, of course, while Timmi was still alive that was exactly what I would have done. It’s so very rarely that I ever get to talk with another mother going through cancer with her child – someone who can actually understand at least a part of my own experience. It’s so very lonely where I am. But I had to stop myself. Were I to go up to them, they would inevitably have asked, “And how is your daughter today?”
As my plane ride to New York progressed, I felt increasingly physically ill. Eventually, I became sick, and unfortunately could not find the air-sick bag in time. I felt very bad for Rona and her husband. Here they are, I thought, off to have a good time after a difficult period, perhaps to celebrate the success of Rona’s treatment. Haven’t they had enough illness and unpleasantness? But Rona spoke to me with kindness and empathy, and even made practical and helpful suggestions. It was so clear to me that her own experience had taught her to empathize with, and respond to, my predicament. But I couldn’t reciprocate by showing her my own empathy for her, by sharing with her what we have in common. My daughter’s story is Rona’s worst nightmare come true.
Since I’ve begun meeting the other students in my MSW program, I’ve told my story many times; I’ll write more about that in my next post. But I’m still left with a lingering sadness for the relationship, however brief, that I might have had with Rona. As I watched her and her husband walk away from me in the airport, I had to restrain myself almost physically from running after her to give her a hug and tell her of my hope that God will bless her with a long and healthy life.
And so all I can do is to express that wish here, and pray that even if I wasn’t able to share it with her directly, it will reach her wherever she is today.
This week we may be seeing some progress - Timmi has reduced the dose of her painkilling patches and has somewhat less pain than she did with the higher dose. So we hope that means that the tumors are shrinking. Also, she has some symptoms that may be indicative of GVH, which would be consistent with shrinking tumors. We hope the trend will continue, without her getting too much GVH as in the past.
She is greatly looking forward to her four-day trip to London this coming week, with the "Chaim" organization that does good things for kids with cancer. The only problem is that they will be eating only in non-kosher places, so Timmi is bringing lots of dry stuff with her. Also, the plane leaves one hour after Shabbat goes out, so Don will have to leave with her immediately on Saturday night, deliver her to a special place where someone will be waiting only for her, and the plane may also have to wait for her. All in all, very nice and well-meaning, but it's quite astonishing how some Israeli Jews can be so unaware of the constraints of religious people. But it does work out that she can go, so we're happy about that.
I have continued to be sick this week, to the point almost of physical/emotional collapse (I can't tell the difference), but have started feeling much better in the past couple of days.
Shabbat Shalom to all.
Love,
Sara
June 1, 2005
A week ago I flew from Israel to New York; today was registration and orientation for the MSW program I’m starting tomorrow.
On the plane, I sat next to a married couple who were on their way to Barcelona for a week. They must have been in their late twenties or early thirties, and were obviously very much in love. After they squeezed past me to get to their seats, the woman (I’ll call her Rona) took off her hat to reveal an almost completely bald head with some sparse, very short hair. At that point I also noticed how thin she was. Ah, I thought, she’s recently been through chemo, or radiation, or both.
My first impulse was to ask about her cancer – What kind? When did she discover it? – and about her treatment – For how long? At what hospital? Will she have to undergo additional treatment? I wanted to connect with her, to tell her that I know what she’s going through, and to express my fervent wishes for her full recovery. But then I thought again. Yes, I could have a sharing conversation with her, full of mutual empathy and understanding. I always get a great deal from conversations like that, and perhaps I could do something good for her as well. But any conversation in which we would share our common experience would also have to reveal the end of Timmi’s story. And that, I believe, is the last thing in the world a recovering cancer patient needs to hear.
I was strongly reminded then of an experience I had shortly after Timmi died. I was sitting in a coffee and sandwich bar in Jerusalem’s main mall when a woman brought in her daughter in a wheelchair. The girl was very thin, and wearing a hat over what was obviously a bald head. I wanted desperately to approach them and compare notes – if only to ask who the girls’ doctor is, maybe trade hospital stories. And, of course, while Timmi was still alive that was exactly what I would have done. It’s so very rarely that I ever get to talk with another mother going through cancer with her child – someone who can actually understand at least a part of my own experience. It’s so very lonely where I am. But I had to stop myself. Were I to go up to them, they would inevitably have asked, “And how is your daughter today?”
As my plane ride to New York progressed, I felt increasingly physically ill. Eventually, I became sick, and unfortunately could not find the air-sick bag in time. I felt very bad for Rona and her husband. Here they are, I thought, off to have a good time after a difficult period, perhaps to celebrate the success of Rona’s treatment. Haven’t they had enough illness and unpleasantness? But Rona spoke to me with kindness and empathy, and even made practical and helpful suggestions. It was so clear to me that her own experience had taught her to empathize with, and respond to, my predicament. But I couldn’t reciprocate by showing her my own empathy for her, by sharing with her what we have in common. My daughter’s story is Rona’s worst nightmare come true.
Since I’ve begun meeting the other students in my MSW program, I’ve told my story many times; I’ll write more about that in my next post. But I’m still left with a lingering sadness for the relationship, however brief, that I might have had with Rona. As I watched her and her husband walk away from me in the airport, I had to restrain myself almost physically from running after her to give her a hug and tell her of my hope that God will bless her with a long and healthy life.
And so all I can do is to express that wish here, and pray that even if I wasn’t able to share it with her directly, it will reach her wherever she is today.
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