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.”
Sunday, July 31, 2005
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.
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