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.
Saturday, July 09, 2005
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.
Monday, May 23, 2005
The Bare Necessities: Sleep
May 20, 2000
It's been a while since I last wrote, because for a while there was nothing new to write, really. In the last week or so, though, there has been good news and bad news.
The bad news is that it has become fairly clear that the pains that Timmi has been experiencing in her knees and shoulders are from tumors and not from GVH as we had hoped. The pains are getting worse, they feel like tumor pains (she knows what those feel like) and she has no other GVH symptoms. She is therefore reducing the doses of steroids and other anti-GVH medicine more quickly, which is good on the one hand because the steroids have very unpleasant side effects (she is all swollen with retained fluids, has trouble sleeping, is irritable etc) but hard in the short term on the other hand because she now feels quite weak from the sudden reduction in the dose. We hope, very hard, that the GVH will return but in the right amount this time (enough to fight the cancer but not enough to hospitalize her like last time).
The good news is that her steps to independence have greatly cheered her up. She really enjoys her driving lessons, and is fervently looking forward to being able to get around on her own. She is still studying for the matriculation exams she is taking, and has completed one with the second to be completed in the next few days.
I know many of you won't see this until Sunday, but Shabbat Shalom anyway.
Love,
Sara
May 22, 2005
I’m leaving Tuesday evening very late for New York, where I’ll begin my much-anticipated course of study for an MSW on June 1. I’m going a week before my classes are due to start because I want to be sure I’ll be sleeping normally by the time I start classes. I’m certainly not looking forward to jet lag. But after years of inability to sleep normally, I’m grateful to find myself confident that I will eventually get back to a reasonable sleep pattern – and even more so that I’ve established a reasonable sleep pattern to get back to.
Sleep is a place to which we should be able to escape when our daytime troubles feel overwhelming. It was therefore a cruel stroke of fate that Timmi’s illness and its treatment often made her unable to sleep. Whenever she was taking a course of steroids, for example, her brain would go into overdrive, and she’d be up for much of the night. During the harder times, she spent much of the day just waiting for night to come, only to find sleep impossible. Sometimes she would put calming music on and give herself a treatment of Reiki. The Reiki did help her relax some of the time, but ultimately it was no substitute for deep sleep.
I was and remain very much able to relate to Timmi’s sleep problems. I’ve always envied people who escape to sleep when life becomes too much for them. Since I was a child, one of the first signs that I’m in emotional trouble has been an inability to sleep. I remember telling my teacher, in third or fourth grade, that I was having a hard time getting to sleep at night; she suggested I take a bath rather than a shower in the evening. I tried, but it didn’t work, because my insomnia wasn't caused by my body’s inability to relax. I couldn't sleep due to my emotional reaction to the tensions between my parents, who separated two or three years later, and to my troubles at school, where my tendency to daydream and my general social cluelessness made me the target of physical and verbal abuse by my schoolmates.
I also remember how during the year before my father died, I slept through an entire unit of my geometry class – taught by Mr. Nadel, on whom I had a wild crush, and whose classes I wouldn't have purposely missed for anything – because sleep was eluding me at night.
After I had children, my problem was “solved” for a while. I'd fall into bed totally exhausted from a full day of work and child care, and fall asleep so quickly that I couldn’t remember my head hitting the pillow. Still, like most mothers, I'd wake up at a baby’s first cry or a child’s call of distress at night. (I’d then usually wake Don, who would uncomplainingly get up to bring the baby to nurse or see what the child needed; if I got out of bed I’d be awake for the rest of the night, whereas Don could drop back to sleep as soon as his task was finished.) In those days, I thought it was hard to have to wake up so often to tend to my children. Only now do I understand what a privilege it is to be able to respond to a child’s cry in the night and to soothe her distress with love and attention.
The worst awakening of my life was on January 5, 2001. I was taking a Friday afternoon nap after finishing preparations for Shabbat. For a full month, Timmi had been lying, very deeply sedated, in the hospital’s intensive care unit. The nurse on duty had insisted that we rest at home, and told us that the minute there was any change whatsoever, he would telephone us so we could rush to Timmi’s bedside. At about 3:00, I was awakened by the ring of the telephone. I heard Don say something like, “Ah,” or “Oh,” and I knew. I sat up, crying already, and Don came into the bedroom to tell me that Timmi had left this world.
For long months and years after that wake-up call, I continued to awaken at around 3:00 – but in the morning, not in the afternoon. Often I woke even earlier in the night. Neither sleeping pills nor natural sleeping remedies had any effect. My earlier experience as a parent was turned on its head – then, I would snatch sleep when I could, during my rare free hours of the day and when no children needed me at night. Now, I had far too many empty hours, but was unable to use them to sleep. I would lie awake for hours, praying for sleep to come and deliver me from my constant awareness that my daughter was gone. Even more, I wanted desperately to dream of Timmi – if only to see her face again, even at the inevitable price of waking up and once more facing the reality of her loss. But most of the time sleep stayed away. When it did visit, it denied me both the dreams I’d hoped for and the rest I so badly needed.
By waking up in the middle of the night, was I reenacting that horrible Friday afternoon? Was I trying to feel close to Timmi by experiencing the restlessness that had plagued her for such long periods? Or was I, as the experts say, simply exhibiting one symptom of the depression into which my daughter’s death had plunged me? Perhaps all of these are true. But I think there is another reason as well. I believe that my wakefulness at night was a kind of vigilance – a way of trying to avoid falling asleep “on my watch,” as I had that terrible Friday afternoon.
As I've moved forward in my journey toward healing, my ability to sleep has slowly returned. At first, I was able to sleep for four hours straight, then five. Now, although I still wake before my alarm rings, I’m usually able to sleep for six hours in a row, and wake up most of the time actually feeling rested. On rare occasions (most often on Shabbat), I can even drop back to sleep again and get as much rest as most people do when they have the time to stay in bed.
I believe the main reason I’ve regained, to some extent, my ability to sleep is that Timmi is now a presence in my day-to-day life. I see her, happily, in my other children; I see her, sadly, in those of her friends with whom I still have a relationship; I see her in the poems, the deeds, and the love she left behind.
Today, I thank God that I can relax my vigil, and sleep without the constant terror that someone precious to me will disappear while I’m dreaming.
It's been a while since I last wrote, because for a while there was nothing new to write, really. In the last week or so, though, there has been good news and bad news.
The bad news is that it has become fairly clear that the pains that Timmi has been experiencing in her knees and shoulders are from tumors and not from GVH as we had hoped. The pains are getting worse, they feel like tumor pains (she knows what those feel like) and she has no other GVH symptoms. She is therefore reducing the doses of steroids and other anti-GVH medicine more quickly, which is good on the one hand because the steroids have very unpleasant side effects (she is all swollen with retained fluids, has trouble sleeping, is irritable etc) but hard in the short term on the other hand because she now feels quite weak from the sudden reduction in the dose. We hope, very hard, that the GVH will return but in the right amount this time (enough to fight the cancer but not enough to hospitalize her like last time).
The good news is that her steps to independence have greatly cheered her up. She really enjoys her driving lessons, and is fervently looking forward to being able to get around on her own. She is still studying for the matriculation exams she is taking, and has completed one with the second to be completed in the next few days.
I know many of you won't see this until Sunday, but Shabbat Shalom anyway.
Love,
Sara
May 22, 2005
I’m leaving Tuesday evening very late for New York, where I’ll begin my much-anticipated course of study for an MSW on June 1. I’m going a week before my classes are due to start because I want to be sure I’ll be sleeping normally by the time I start classes. I’m certainly not looking forward to jet lag. But after years of inability to sleep normally, I’m grateful to find myself confident that I will eventually get back to a reasonable sleep pattern – and even more so that I’ve established a reasonable sleep pattern to get back to.
Sleep is a place to which we should be able to escape when our daytime troubles feel overwhelming. It was therefore a cruel stroke of fate that Timmi’s illness and its treatment often made her unable to sleep. Whenever she was taking a course of steroids, for example, her brain would go into overdrive, and she’d be up for much of the night. During the harder times, she spent much of the day just waiting for night to come, only to find sleep impossible. Sometimes she would put calming music on and give herself a treatment of Reiki. The Reiki did help her relax some of the time, but ultimately it was no substitute for deep sleep.
I was and remain very much able to relate to Timmi’s sleep problems. I’ve always envied people who escape to sleep when life becomes too much for them. Since I was a child, one of the first signs that I’m in emotional trouble has been an inability to sleep. I remember telling my teacher, in third or fourth grade, that I was having a hard time getting to sleep at night; she suggested I take a bath rather than a shower in the evening. I tried, but it didn’t work, because my insomnia wasn't caused by my body’s inability to relax. I couldn't sleep due to my emotional reaction to the tensions between my parents, who separated two or three years later, and to my troubles at school, where my tendency to daydream and my general social cluelessness made me the target of physical and verbal abuse by my schoolmates.
I also remember how during the year before my father died, I slept through an entire unit of my geometry class – taught by Mr. Nadel, on whom I had a wild crush, and whose classes I wouldn't have purposely missed for anything – because sleep was eluding me at night.
After I had children, my problem was “solved” for a while. I'd fall into bed totally exhausted from a full day of work and child care, and fall asleep so quickly that I couldn’t remember my head hitting the pillow. Still, like most mothers, I'd wake up at a baby’s first cry or a child’s call of distress at night. (I’d then usually wake Don, who would uncomplainingly get up to bring the baby to nurse or see what the child needed; if I got out of bed I’d be awake for the rest of the night, whereas Don could drop back to sleep as soon as his task was finished.) In those days, I thought it was hard to have to wake up so often to tend to my children. Only now do I understand what a privilege it is to be able to respond to a child’s cry in the night and to soothe her distress with love and attention.
The worst awakening of my life was on January 5, 2001. I was taking a Friday afternoon nap after finishing preparations for Shabbat. For a full month, Timmi had been lying, very deeply sedated, in the hospital’s intensive care unit. The nurse on duty had insisted that we rest at home, and told us that the minute there was any change whatsoever, he would telephone us so we could rush to Timmi’s bedside. At about 3:00, I was awakened by the ring of the telephone. I heard Don say something like, “Ah,” or “Oh,” and I knew. I sat up, crying already, and Don came into the bedroom to tell me that Timmi had left this world.
For long months and years after that wake-up call, I continued to awaken at around 3:00 – but in the morning, not in the afternoon. Often I woke even earlier in the night. Neither sleeping pills nor natural sleeping remedies had any effect. My earlier experience as a parent was turned on its head – then, I would snatch sleep when I could, during my rare free hours of the day and when no children needed me at night. Now, I had far too many empty hours, but was unable to use them to sleep. I would lie awake for hours, praying for sleep to come and deliver me from my constant awareness that my daughter was gone. Even more, I wanted desperately to dream of Timmi – if only to see her face again, even at the inevitable price of waking up and once more facing the reality of her loss. But most of the time sleep stayed away. When it did visit, it denied me both the dreams I’d hoped for and the rest I so badly needed.
By waking up in the middle of the night, was I reenacting that horrible Friday afternoon? Was I trying to feel close to Timmi by experiencing the restlessness that had plagued her for such long periods? Or was I, as the experts say, simply exhibiting one symptom of the depression into which my daughter’s death had plunged me? Perhaps all of these are true. But I think there is another reason as well. I believe that my wakefulness at night was a kind of vigilance – a way of trying to avoid falling asleep “on my watch,” as I had that terrible Friday afternoon.
As I've moved forward in my journey toward healing, my ability to sleep has slowly returned. At first, I was able to sleep for four hours straight, then five. Now, although I still wake before my alarm rings, I’m usually able to sleep for six hours in a row, and wake up most of the time actually feeling rested. On rare occasions (most often on Shabbat), I can even drop back to sleep again and get as much rest as most people do when they have the time to stay in bed.
I believe the main reason I’ve regained, to some extent, my ability to sleep is that Timmi is now a presence in my day-to-day life. I see her, happily, in my other children; I see her, sadly, in those of her friends with whom I still have a relationship; I see her in the poems, the deeds, and the love she left behind.
Today, I thank God that I can relax my vigil, and sleep without the constant terror that someone precious to me will disappear while I’m dreaming.
Tuesday, May 10, 2005
Liberty
May 5, 2000
During the past week Timmi's mood continued to be somewhat unstable but the fluctuations were in a reasonably defined "band". Her physical symptoms also changed form day to day (and even more often). She increased the dose of her pain medication, and so her "background" pain situation improved somewhat, although it still hurts her when she moves in certain ways. She is also extremely tired some of the time, possibly due to the fact that she sleeps quite badly at night, as a result of the steroids she is taking. She has been reducing the dose of steroids, though, so we hope to eliminate them completely as soon as possible.
She has also been working a couple of hours a day a few days a week, at jobs she got through my request on one of the recent updates. She is sorting and filing all kinds of documents that collected over the years at one family's home, and she is typing data into a database at the ADL's office. She has also been trying to study for the two Bagruiot that she wants to take this year, but her sleepiness interferes much of the time. But in Israel, luckily, the opportunities to make up tests that one didn't take (or even improve grades, for that matter) are almost limitless.
We have also been thinking of several ways by which she can become more independent. One of her problems (and ours) is that she is so dependent on us to take her everywhere by car. So we have decided to make an exception to a family policy which discourages our kids from driving before the age of 21, and have her take driving lessons as soon as she feels up to it physically. She will also open a bank account, and receive her disability allowance independently of us, and will thus budget her own clothes, entertainment, etc. This plan made her feel more optimistic than she has in quite a while, as is extremely understandable. Imagine being over 17 and almost totally dependent on your parents! (Also imagine having such a dependent 17-year-old.)
Don and I have become quite exhausted over the past week. Because of Timmi's present situation, I cannot work outside the home more than a minimal amount, and so the entire burden of supporting the family has fallen on his shoulders. As a result, he stays up quite late at night working at his consulting business, and I do almost all the errands, household stuff and ferrying around of Timmi. This takes a physical and emotional toll on both of us. Good we have Shabbat!
Shabbat Shalom to all.
Love,
Sara
May 9, 2005
Right now we’re between Passover, the Jewish Festival of Freedom, and Yom HaAtzma’ut, Israel’s Independence Day. On Passover, the Children of Israel started their painful but immensely meaningful transition from their lives as slaves of a certain ethnic and religious group to their new identity as a distinct, independent people responsible for their own destiny. And Israel Independence Day marks the beginning of the Jewish people’s transformation from an ethnic and religious minority in the Diaspora to a nation with its own homeland.
I’m also about to embark on a journey that will bring with it a certain freedom; this summer I will live away from my family for the first time in 28 years – in a dormitory suite, almost like a single student. So it seems fitting to find now that my update of five years ago focused on Timmi’s need for a more independent life. But while for Timmi any independence she achieved was a pure blessing, I have more mixed feelings about some of the kinds of freedom I enjoy today.
Timmi was first diagnosed with cancer when she was twelve years old. Just when she should have started the process of separating from her mother and father, and of forming new and stronger bonds with her peers, she was suddenly thrown back into a kind of virtual babyhood, as she lost control of her life. She would lie in her hospital bed for hours, subject to the nurses’ and doctors’ day-to-day routines. Things – sometimes painful things – were done to her whether she wanted them done or not. There were long periods during which she couldn’t walk by herself, and some during which she couldn’t even feed herself, but had to be “fed” through a “Hickman,” a catheter inserted into an artery through her chest.
We tried our best to give Timmi as much control, or sense of control, as we possibly could. From the beginning, we discussed with her all the details of her diagnosis and treatment, sharing with her all the literature we were given to read about cancer in general and about leukemia in particular. Although it was we who decided on the course of her treatment, we were always careful to take her feelings and opinions into consideration. Later, she learned to perform (under our supervision) some of the technical tasks of her treatment. For example, after her first bone marrow transplant, when she was receiving medication intravenously at home, she learned to change the bags of fluids by herself; she also learned how to change the bandages on her Hickman. Anything she could possibly do for herself, she did.
But ultimately there was no getting around it – when she got sick, Timmi’s power to decide for herself was reduced to a small fraction of what it should have been for a healthy girl her age. She was acutely aware of the difference between herself and her peers which, of course, went far deeper than the degree of her independence. When she was in ninth grade, she wrote a poem expressing her frustration and longing.
I might have been now
A tranquil girl, with a smile on her face,
And not perpetually cross.
A serene and confident girl,
Who doesn’t fear every shadow.
I might have been now
A regular schoolgirl,
And a girl who returns home from school
With quick, light steps,
Without arriving panting and in pain.
I might have
Joined all the trips and camps
That I missed and will go on missing.
Slept at night, with pleasant dreams,
Made peace with myself – no one’s perfect.
I might have
Had friends
Who come to my home and host me at theirs,
And all might have been self-evident,
And clear, that I truly deserve this.
I might have had something to do with my life,
Accepted love from my sisters
And finally stopped weeping
And have been fourteen and five months.
I might
Have
Been.
Timmi was delighted when a time finally came when she was able to participate in normal activities together with her peers. Just a month after writing her poem, she went to that year’s pre-Passover Scouts trip. As a junior counselor, she accompanied the eighth-graders on a four-night “Sea to Sea” hike from the Mediterranean to the Kinneret (the Sea of Galilee), at the end of which they pledged loyalty to the Scouts movement and its ideals. She was thrilled to discover that she could once again move and use her body like the athletic girl she was before she became ill. She even took on extra tasks, like carrying the jerry-can around and making sure that everyone drank enough. She came back from that trip positively glowing, feeling that perhaps she really was about to to rejoin the stream of normal life.
A year later, Timmi started to feel the the pain that (we know now) signaled the return of her cancer. After that, although there were short periods during which she enjoyed a semblance of independence – such as those few months five years ago, when she was taking driving lessons and working a few hours a week – she was to need us to take care of her for the rest of her life.
Parallel to Timmi’s loss of independence, Don and I lost much of our own liberty. All our plans were subject to Timmi’s treatment schedule. There were long periods when neither of us could get to work every day, let alone go out to have fun. All those hours spent by Timmi’s bedside at the hospital and with her at home when she couldn’t attend school meant that we had less time, or no time, to spend on many of our normal, routine activities – even to spend with the other children. At the time, I missed having control of my own schedule, and the freedom of occasionally deciding to do something fun on the spur of the moment, much the same as I had felt when I'd had many small children to care for. But when our freedom was returned to us, it came at a horrific cost.
I remember a conversation I had many years ago with Veronica, a close friend, just after her mother had died only a few months after her father passed away. For years, her parents had been living with her and her family, and she had been spending more and more of her non-working hours caring for them. In my naiveté I remarked that, now that she had no one she needed to take care of, she was free to do all the things she hadn’t been able to do for so long. She replied sadly, “That’s exactly the problem – I have no one to take care of any more.”
I’m also reminded of the Polish-French writer-director Krzysztof Kieslowski’s extraordiary movie “Three Colors: Blue.” It’s the first in a trilogy of films named after the French flag – Blue, White and Red – with each color corresponding to one of the ideals of Liberty, Equality, and Fraternity. In his rendition of Liberty, Kieslowski did not choose to deal with the grand themes of political or national freedom. Instead, the film tells of Anna, who suddenly finds herself “free” of all bonds when her husband and child are killed in a car accident. This tragic independence ultimately turns into a deeper freedom, when she finally allows herself to love again.
Since Timmi left us, I feel a profound bond with the real-life Veronica and the fictional Anna. The emptiness of my days, after all the hours that I'd spent caring for Timmi all but overwhelmed me in the first months and years of my bereavement. I literally felt like a ship whose anchor had been cut away, leaving it adrift in uncharted waters. Even today, when I’m again able to enjoy my leisure hours, there is no doubt whatsoever that I’d give them up in a second if I could only have Timmi back.
At the same time, like Anna, and like Veronica (who has since found comfort in caring for the grandchildren with whom she has been blessed in the past few years), I’ve begun to find my way back from the despair of the sudden liberty that was thrust upon me when I no longer had my daughter to take care of. And my true liberation, much like Anna’s, has been internal. I no longer see freedom as the ability to do whatever I want to do, as the spirit takes me at a particular moment. I’m now extraordinarily grateful for the demands on my time and energy that inevitably attend my involvement in relationships – with my sister, with my friends, and above all with Don and my children.
True freedom, for me, is the privilege of submitting myself to the bonds of love.
During the past week Timmi's mood continued to be somewhat unstable but the fluctuations were in a reasonably defined "band". Her physical symptoms also changed form day to day (and even more often). She increased the dose of her pain medication, and so her "background" pain situation improved somewhat, although it still hurts her when she moves in certain ways. She is also extremely tired some of the time, possibly due to the fact that she sleeps quite badly at night, as a result of the steroids she is taking. She has been reducing the dose of steroids, though, so we hope to eliminate them completely as soon as possible.
She has also been working a couple of hours a day a few days a week, at jobs she got through my request on one of the recent updates. She is sorting and filing all kinds of documents that collected over the years at one family's home, and she is typing data into a database at the ADL's office. She has also been trying to study for the two Bagruiot that she wants to take this year, but her sleepiness interferes much of the time. But in Israel, luckily, the opportunities to make up tests that one didn't take (or even improve grades, for that matter) are almost limitless.
We have also been thinking of several ways by which she can become more independent. One of her problems (and ours) is that she is so dependent on us to take her everywhere by car. So we have decided to make an exception to a family policy which discourages our kids from driving before the age of 21, and have her take driving lessons as soon as she feels up to it physically. She will also open a bank account, and receive her disability allowance independently of us, and will thus budget her own clothes, entertainment, etc. This plan made her feel more optimistic than she has in quite a while, as is extremely understandable. Imagine being over 17 and almost totally dependent on your parents! (Also imagine having such a dependent 17-year-old.)
Don and I have become quite exhausted over the past week. Because of Timmi's present situation, I cannot work outside the home more than a minimal amount, and so the entire burden of supporting the family has fallen on his shoulders. As a result, he stays up quite late at night working at his consulting business, and I do almost all the errands, household stuff and ferrying around of Timmi. This takes a physical and emotional toll on both of us. Good we have Shabbat!
Shabbat Shalom to all.
Love,
Sara
May 9, 2005
Right now we’re between Passover, the Jewish Festival of Freedom, and Yom HaAtzma’ut, Israel’s Independence Day. On Passover, the Children of Israel started their painful but immensely meaningful transition from their lives as slaves of a certain ethnic and religious group to their new identity as a distinct, independent people responsible for their own destiny. And Israel Independence Day marks the beginning of the Jewish people’s transformation from an ethnic and religious minority in the Diaspora to a nation with its own homeland.
I’m also about to embark on a journey that will bring with it a certain freedom; this summer I will live away from my family for the first time in 28 years – in a dormitory suite, almost like a single student. So it seems fitting to find now that my update of five years ago focused on Timmi’s need for a more independent life. But while for Timmi any independence she achieved was a pure blessing, I have more mixed feelings about some of the kinds of freedom I enjoy today.
Timmi was first diagnosed with cancer when she was twelve years old. Just when she should have started the process of separating from her mother and father, and of forming new and stronger bonds with her peers, she was suddenly thrown back into a kind of virtual babyhood, as she lost control of her life. She would lie in her hospital bed for hours, subject to the nurses’ and doctors’ day-to-day routines. Things – sometimes painful things – were done to her whether she wanted them done or not. There were long periods during which she couldn’t walk by herself, and some during which she couldn’t even feed herself, but had to be “fed” through a “Hickman,” a catheter inserted into an artery through her chest.
We tried our best to give Timmi as much control, or sense of control, as we possibly could. From the beginning, we discussed with her all the details of her diagnosis and treatment, sharing with her all the literature we were given to read about cancer in general and about leukemia in particular. Although it was we who decided on the course of her treatment, we were always careful to take her feelings and opinions into consideration. Later, she learned to perform (under our supervision) some of the technical tasks of her treatment. For example, after her first bone marrow transplant, when she was receiving medication intravenously at home, she learned to change the bags of fluids by herself; she also learned how to change the bandages on her Hickman. Anything she could possibly do for herself, she did.
But ultimately there was no getting around it – when she got sick, Timmi’s power to decide for herself was reduced to a small fraction of what it should have been for a healthy girl her age. She was acutely aware of the difference between herself and her peers which, of course, went far deeper than the degree of her independence. When she was in ninth grade, she wrote a poem expressing her frustration and longing.
I might have been now
A tranquil girl, with a smile on her face,
And not perpetually cross.
A serene and confident girl,
Who doesn’t fear every shadow.
I might have been now
A regular schoolgirl,
And a girl who returns home from school
With quick, light steps,
Without arriving panting and in pain.
I might have
Joined all the trips and camps
That I missed and will go on missing.
Slept at night, with pleasant dreams,
Made peace with myself – no one’s perfect.
I might have
Had friends
Who come to my home and host me at theirs,
And all might have been self-evident,
And clear, that I truly deserve this.
I might have had something to do with my life,
Accepted love from my sisters
And finally stopped weeping
And have been fourteen and five months.
I might
Have
Been.
Timmi was delighted when a time finally came when she was able to participate in normal activities together with her peers. Just a month after writing her poem, she went to that year’s pre-Passover Scouts trip. As a junior counselor, she accompanied the eighth-graders on a four-night “Sea to Sea” hike from the Mediterranean to the Kinneret (the Sea of Galilee), at the end of which they pledged loyalty to the Scouts movement and its ideals. She was thrilled to discover that she could once again move and use her body like the athletic girl she was before she became ill. She even took on extra tasks, like carrying the jerry-can around and making sure that everyone drank enough. She came back from that trip positively glowing, feeling that perhaps she really was about to to rejoin the stream of normal life.
A year later, Timmi started to feel the the pain that (we know now) signaled the return of her cancer. After that, although there were short periods during which she enjoyed a semblance of independence – such as those few months five years ago, when she was taking driving lessons and working a few hours a week – she was to need us to take care of her for the rest of her life.
Parallel to Timmi’s loss of independence, Don and I lost much of our own liberty. All our plans were subject to Timmi’s treatment schedule. There were long periods when neither of us could get to work every day, let alone go out to have fun. All those hours spent by Timmi’s bedside at the hospital and with her at home when she couldn’t attend school meant that we had less time, or no time, to spend on many of our normal, routine activities – even to spend with the other children. At the time, I missed having control of my own schedule, and the freedom of occasionally deciding to do something fun on the spur of the moment, much the same as I had felt when I'd had many small children to care for. But when our freedom was returned to us, it came at a horrific cost.
I remember a conversation I had many years ago with Veronica, a close friend, just after her mother had died only a few months after her father passed away. For years, her parents had been living with her and her family, and she had been spending more and more of her non-working hours caring for them. In my naiveté I remarked that, now that she had no one she needed to take care of, she was free to do all the things she hadn’t been able to do for so long. She replied sadly, “That’s exactly the problem – I have no one to take care of any more.”
I’m also reminded of the Polish-French writer-director Krzysztof Kieslowski’s extraordiary movie “Three Colors: Blue.” It’s the first in a trilogy of films named after the French flag – Blue, White and Red – with each color corresponding to one of the ideals of Liberty, Equality, and Fraternity. In his rendition of Liberty, Kieslowski did not choose to deal with the grand themes of political or national freedom. Instead, the film tells of Anna, who suddenly finds herself “free” of all bonds when her husband and child are killed in a car accident. This tragic independence ultimately turns into a deeper freedom, when she finally allows herself to love again.
Since Timmi left us, I feel a profound bond with the real-life Veronica and the fictional Anna. The emptiness of my days, after all the hours that I'd spent caring for Timmi all but overwhelmed me in the first months and years of my bereavement. I literally felt like a ship whose anchor had been cut away, leaving it adrift in uncharted waters. Even today, when I’m again able to enjoy my leisure hours, there is no doubt whatsoever that I’d give them up in a second if I could only have Timmi back.
At the same time, like Anna, and like Veronica (who has since found comfort in caring for the grandchildren with whom she has been blessed in the past few years), I’ve begun to find my way back from the despair of the sudden liberty that was thrust upon me when I no longer had my daughter to take care of. And my true liberation, much like Anna’s, has been internal. I no longer see freedom as the ability to do whatever I want to do, as the spirit takes me at a particular moment. I’m now extraordinarily grateful for the demands on my time and energy that inevitably attend my involvement in relationships – with my sister, with my friends, and above all with Don and my children.
True freedom, for me, is the privilege of submitting myself to the bonds of love.
Monday, May 02, 2005
The High Point of a Life
April 28, 2000
I hope all of you had a wonderful Pesach.
Timmi's performance went absolutely wonderfully, and she was on a high from the experience for a couple of days afterward. Happily for everyone who came only for Timmi, the play itself was also excellent and very well performed. (Timmi herself also shone, and it was extremely impressive, both for Timmi and for the other girls, how she was able to integrate into a fully finished production, which had in fact already been performed, in the space of only a couple of weeks.) I have heard only good feedback from everyone who was there. Thank all of you who came for helping to make it a truly memorable evening.
After the play was, of course, Pesach itself, and all of us enjoyed the Seder. Unfortunately, because of Timmi's health, we couldn't be sure it would go as planned so we were unable to invite guests. But our family is big enough, even without Sheila who had to stay in Boston for the holiday, to make quite a respectable group just by ourselves.
On Chol HaMoed* we went for two nights to the Holiday Inn in Haifa, and visited Caesaria, Zichron Ya’acov, Acre and the Haifa Science Museum. On the whole, Timmi enjoyed herself, but her mood was more unstable than usual during the trip, and little things annoyed her fairly easily. She and we are glad we went, though, even if it took a lot of effort to keep things going.
Altogether, Timmi's mood has been slipping somewhat. This may have a lot to do with the fact that physically, things are also getting harder for her. She has been more and more tired, and has been having significantly more pain, which we still don't know whether to attribute to her GVH or to her cancer. The decline in her mood is also aggravated, of course, by the fact that the fun things she had planned (the play and the trip) are now behind her, and so she and we need to find new things for her to look forward to. Matriculation exams are of course important, but hardly fun! Anyway, clearly it is very difficult, and in fact probably futile, to separate out the physical and psychological components of her situation.
Shabbat Shalom to all.
Much love,
Sara
*Chol HaMoed – the intermediate days of Passover.
May 2, 2005
It’s hard to believe that it’s already five years since Timmi appeared in the production that her drama class put on as their senior project. Participating in this production meant a great deal to Timmi, and she reveled in the sense of accomplishment and positive feedback that the performance brought her. The night of the production was one of the happiest of Timmi’s life. So why does looking back at that evening make me so sad?
The girls in Timmi’s high school drama program were the closest thing she had to a group of good friends, and to a source of peer support. Together with a professional playwright, the group created the ideas and script for their twelfth-grade play; Timmi participated whenever her health permitted. From the outset, the girls decided to structure the play in a way that took into account the fact that there was no way of knowing whether Timmi would be able to take part in the production. They wrote her an interesting and challenging part that could be eliminated if she was unable to appear when the play was performed.
In the event, the play was staged around Purim, while Timmi was hospitalized. As you can imagine, she was very disappointed to have missed the chance to perform. But after she regained enough of her strength to come back to school, the girls met among themselves and decided to give her that chance after all. Although they'd already come down from the high of the Purim performances, had forgotten some of their lines, and had other matriculation exams to study for, they decided to stage one more production, this time with Timmi’s part written back in. And this time, they would do it not at the school but in a commercial theater – and contribute the proceeds to the Israel Cancer Society. The girls approached the theater management and convinced them to donate the performance hall for that evening, and sold tickets to their families, friends and acquaintances (as did the members of our synagogue). Every single ticket was sold.
Timmi played the middle-aged, formerly glamorous and now-bitter owner of a cosmetics company. I can still see her in her elaborately styled platinum blond wig and sequined dress, a long cigarette holder between her fingers and a sardonic expression on her face. She performed with energy, verve and great wit, and when her turn came to take her bow, the audience gave her a standing ovation that lasted at least a full minute. They were applauding her performance, of course, but so much more – her courage, her tenacity, and her strength in the face of all that she’d been forced to go through. She drank up every second of it. It was, I believe, the high point of her life.
And where am I now, five years later?
On the first day of Passover, I found myself sitting in synagogue between two young women who had been Timmi’s friends. As I inevitably do, I began to wonder which of Timmi’s peers would be the first to marry. Just as I started to imagine how I would feel at such a wedding, the engagement of a third friend of Timmi’s was announced. So it’s started, I thought. Now will come the engagements, the weddings, the births, all those joyous occasions to which Timmi – like all young people – should rightfully have looked forward.
It’s simply not fair and not right that I know now, for a cold, hard fact, that Timmi’s performance marked the last time she was ever to feel pure joy in this world. That experience should have been only one of many high points in her life; I should not be able to look back now and say, “That was her happiest moment.” Even now, at the age of 50, I myself am looking ahead to new peaks of possible experience – studying for and working at a career that I truly love, seeing my children married, becoming a grandmother. How is it possible that by the age of 18, my daughter had already experienced her greatest happiness?
I’ve been having a very hard time the last few weeks getting myself to sit down and work on this blog. My mind simply doesn’t want to make those connections and associations between the past and the present that fuel my writing. I discard each idea I think of, until one sticks in my head long enough to develop into a post. Then, throughout the process of writing, I question whether I'm really saying something meaningful. Is it true, or am I just making it up because it sounds right? When I go back and read what I’ve posted, I see that what I’ve written does express where I am, and at least some of what I want to say. But the next time, I go through the same process over again.
I’ve told myself in the past that perhaps I’m running out of things to say, that I’m getting tired, that my creativity and insight are beginning to run dry. But now, after writing this entry, I’m quite sure the reason I’m finding it so hard to face my updates of five years ago, however upbeat they were at the time, is that the story gets progressively sadder from this point on. Timmi did experience other moments of happiness after her grand performance was behind her. But I’ve just finished writing about her very last sustained burst of joyful energy.
Still, as hard as it's becoming to write, I feel that Timmi’s story - all our family’s story – needs to be told. I pray that I will find the strength within myself to go on writing, and hope that you will not find it too difficult to go on reading, until the story of Timmi’s time on this Earth has ended.
I hope all of you had a wonderful Pesach.
Timmi's performance went absolutely wonderfully, and she was on a high from the experience for a couple of days afterward. Happily for everyone who came only for Timmi, the play itself was also excellent and very well performed. (Timmi herself also shone, and it was extremely impressive, both for Timmi and for the other girls, how she was able to integrate into a fully finished production, which had in fact already been performed, in the space of only a couple of weeks.) I have heard only good feedback from everyone who was there. Thank all of you who came for helping to make it a truly memorable evening.
After the play was, of course, Pesach itself, and all of us enjoyed the Seder. Unfortunately, because of Timmi's health, we couldn't be sure it would go as planned so we were unable to invite guests. But our family is big enough, even without Sheila who had to stay in Boston for the holiday, to make quite a respectable group just by ourselves.
On Chol HaMoed* we went for two nights to the Holiday Inn in Haifa, and visited Caesaria, Zichron Ya’acov, Acre and the Haifa Science Museum. On the whole, Timmi enjoyed herself, but her mood was more unstable than usual during the trip, and little things annoyed her fairly easily. She and we are glad we went, though, even if it took a lot of effort to keep things going.
Altogether, Timmi's mood has been slipping somewhat. This may have a lot to do with the fact that physically, things are also getting harder for her. She has been more and more tired, and has been having significantly more pain, which we still don't know whether to attribute to her GVH or to her cancer. The decline in her mood is also aggravated, of course, by the fact that the fun things she had planned (the play and the trip) are now behind her, and so she and we need to find new things for her to look forward to. Matriculation exams are of course important, but hardly fun! Anyway, clearly it is very difficult, and in fact probably futile, to separate out the physical and psychological components of her situation.
Shabbat Shalom to all.
Much love,
Sara
*Chol HaMoed – the intermediate days of Passover.
May 2, 2005
It’s hard to believe that it’s already five years since Timmi appeared in the production that her drama class put on as their senior project. Participating in this production meant a great deal to Timmi, and she reveled in the sense of accomplishment and positive feedback that the performance brought her. The night of the production was one of the happiest of Timmi’s life. So why does looking back at that evening make me so sad?
The girls in Timmi’s high school drama program were the closest thing she had to a group of good friends, and to a source of peer support. Together with a professional playwright, the group created the ideas and script for their twelfth-grade play; Timmi participated whenever her health permitted. From the outset, the girls decided to structure the play in a way that took into account the fact that there was no way of knowing whether Timmi would be able to take part in the production. They wrote her an interesting and challenging part that could be eliminated if she was unable to appear when the play was performed.
In the event, the play was staged around Purim, while Timmi was hospitalized. As you can imagine, she was very disappointed to have missed the chance to perform. But after she regained enough of her strength to come back to school, the girls met among themselves and decided to give her that chance after all. Although they'd already come down from the high of the Purim performances, had forgotten some of their lines, and had other matriculation exams to study for, they decided to stage one more production, this time with Timmi’s part written back in. And this time, they would do it not at the school but in a commercial theater – and contribute the proceeds to the Israel Cancer Society. The girls approached the theater management and convinced them to donate the performance hall for that evening, and sold tickets to their families, friends and acquaintances (as did the members of our synagogue). Every single ticket was sold.
Timmi played the middle-aged, formerly glamorous and now-bitter owner of a cosmetics company. I can still see her in her elaborately styled platinum blond wig and sequined dress, a long cigarette holder between her fingers and a sardonic expression on her face. She performed with energy, verve and great wit, and when her turn came to take her bow, the audience gave her a standing ovation that lasted at least a full minute. They were applauding her performance, of course, but so much more – her courage, her tenacity, and her strength in the face of all that she’d been forced to go through. She drank up every second of it. It was, I believe, the high point of her life.
And where am I now, five years later?
On the first day of Passover, I found myself sitting in synagogue between two young women who had been Timmi’s friends. As I inevitably do, I began to wonder which of Timmi’s peers would be the first to marry. Just as I started to imagine how I would feel at such a wedding, the engagement of a third friend of Timmi’s was announced. So it’s started, I thought. Now will come the engagements, the weddings, the births, all those joyous occasions to which Timmi – like all young people – should rightfully have looked forward.
It’s simply not fair and not right that I know now, for a cold, hard fact, that Timmi’s performance marked the last time she was ever to feel pure joy in this world. That experience should have been only one of many high points in her life; I should not be able to look back now and say, “That was her happiest moment.” Even now, at the age of 50, I myself am looking ahead to new peaks of possible experience – studying for and working at a career that I truly love, seeing my children married, becoming a grandmother. How is it possible that by the age of 18, my daughter had already experienced her greatest happiness?
I’ve been having a very hard time the last few weeks getting myself to sit down and work on this blog. My mind simply doesn’t want to make those connections and associations between the past and the present that fuel my writing. I discard each idea I think of, until one sticks in my head long enough to develop into a post. Then, throughout the process of writing, I question whether I'm really saying something meaningful. Is it true, or am I just making it up because it sounds right? When I go back and read what I’ve posted, I see that what I’ve written does express where I am, and at least some of what I want to say. But the next time, I go through the same process over again.
I’ve told myself in the past that perhaps I’m running out of things to say, that I’m getting tired, that my creativity and insight are beginning to run dry. But now, after writing this entry, I’m quite sure the reason I’m finding it so hard to face my updates of five years ago, however upbeat they were at the time, is that the story gets progressively sadder from this point on. Timmi did experience other moments of happiness after her grand performance was behind her. But I’ve just finished writing about her very last sustained burst of joyful energy.
Still, as hard as it's becoming to write, I feel that Timmi’s story - all our family’s story – needs to be told. I pray that I will find the strength within myself to go on writing, and hope that you will not find it too difficult to go on reading, until the story of Timmi’s time on this Earth has ended.
Tuesday, April 26, 2005
Looking Forward, Looking Back
April 7, 2000
Timmi continues to do quite well, although her mood has been somewhat more unstable; it is easy at this point for her to go quite quickly from euphoria to extreme irritability. I hope as her physical condition stabilizes, her emotional state will as well. At any rate, most of the time she is quite cheerful, and is still busy will her plans. Her physical state has in fact been stable this week, with some GVH but not enough to bother her too much; when it does bother her she handles it quite well. We just hope the GVH is busy successfully fighting the cancer.
We are also happy to let you all know that on the Monday evening two days before the Seder (April 17), Timmi will be appearing in a production being staged by her Theater class from Pelech, and the public is invited. All the proceeds will go to the Society for the War on Cancer. The production will be at the Gerard Behar Center, at 8 or 8:30; full details will follow in a later update. In the meantime, save the evening for a nice break from Pesach* madness.
By the way, Timmi needs a cigarette holder as one of her props. Anyone out there have one or know where to get one?
After the production, Timmi will start studying her friends' notes from her Hebrew literature classes and intends to finish that matriculation exam. After that, we'll see. Does anyone know of a part-time, physically untiring job that she might do? She is extremely responsible and reliable, but has to have enough flexibility in case of medical problems. It would mean a lot to her, though, to start doing something "normal".
Shabbat Shalom to all.
Love,
Sara
*Pesach – Passover.
April 26, 2005
Like most other people of my generation and general background, I’ve spent much of my life looking to the future. Sometimes I’ve looked ahead with worry and dread; other times, with hope and anticipation. Both states of mind can be problematic. When I’ve been consumed by worry, this has kept me from appreciating and enjoying where I am at that particular moment (see “Living in the Moment,” August 2004). But constant anticipation of better things has it's price as well - on occasion, it's had the effect of keeping me from dealing effectively with the difficult realities of the here and now.
But it’s very, very important to look forward. If we don’t worry, we can’t prepare ourselves for what the future may hold. And life without hope for a better future – well, that would be terribly devastating to contemplate. And so we tell ourselves stories of a new and different life to come, tales with happy endings, and these daydreams help us bear up under the hardships with which we must struggle today.
The period leading up to Timmi’s dramatic performance just before Pesach five years ago was one of the happiest in her life (I’ll write more about the performance itself in my next post). She was busy with rehearsals, with her costume, and with letting the world know about the upcoming production. At the same time, she was planning and preparing for all kinds of other activities. She was planning to start driving lessons. She was making plans for taking some of her matriculation exams at the end of that academic year, and even looking for a part-time job. She truly felt that she would soon return to at least a semblance of normal life, that there was a real chance that the worst was behind her.
When I look back now at that time of excitement and anticipation, I’m very grateful for Timmi’s capacity for hope. How much harder life would have been for her had she given in to despair, had she not told herself that her life, which had been so very difficult until then, could and would change for the better. I believe that her capacity for happiness was directly related to this ability to look to the future rather than dwell on the past. In a certain sense, it was this hope that kept her going – kept her alive.
But today I know how Timmi’s story ended. Now, living with that knowledge, when loss and sadness threaten to overwhelm me it’s much harder than it once was to tell myself a tale with a happy ending (see “Losing My Innocence,” two posts before this one). And so, because escape into a fantasy future is no longer an option, I now find myself trying to create an alternative reality in a different way – by breathing new life into my past.
In recent years, I’ve spent much of my spare time thinking about and trying to find people I knew before I met Don and came to live in Israel, and to re-establish relationships with them. In some cases I’ve succeeded. I’m now back in occasional touch with my first childhood friend, with whom I’d lost contact about 23 years before we found each other (actually she found me, but I’ve been very eager to keep the new relationship going). I recently found and have started corresponding with a friend whose family warmly and kindly “adopted” me when I was studying in Paris 31 years ago. I’ve even “reestablished” a relationship with a second cousin whom I’ve probably never met (neither of us is absolutely sure) – but he knew my mother and grandparents, so I think it counts. These relationships have added a new dimension to my present life, and I’m very grateful to have found them.
You will say, of course, that there’s nothing unusual about any of this. Most people my age often wonder “Whatever became of…?”, and with Google it’s now often possible to find out. I’m sure I'm not the first or last fifty-ish person to spend time searching the Net for clues as to what her old acquaintances are doing now. But I’ve gone beyond getting back in touch with distant family and close friends with whom I’d lost contact. Obsessed is probably too strong a word, but I’ve put more emotional resources than is probably healthy in trying to resurrect old relationships. In fact, I'm even trying to establish new relationships with people with whom I wasn’t ever close, but wished I were when I knew them.
And though I’ve discovered that most people are decidedly not interested in reopening past relationships, I persist even in my more hopeless attempts. I’ve even ruined things for myself on occasion by writing about my life in more detail than the average person wants to hear, too early in the correspondence. In one case, I wrote five times after the person on the other end stopped answering my letters - and I still find myself thinking of her today, a year later, and wondering whether to call her when I get to the States this summer.
I’ve asked myself many times why I feel such a strong need to do this. After all, I’m hardly lonely in my present life. I have a strong marriage, wonderful children, a close and vibrant religious community, and supportive and loving friends. I’m even in touch with the friends with whom I was closest in childhood, high school and college. The most sensible thing would be to gratefully concentrate wholly on the people who surround me here and now, and accept that both I and the people I knew way back when have moved on. Why can’t I just leave the past to memory?
I think the answer is a complex mix of many different possibilities, and I don’t doubt that all are true at the same time. One possible explanation – shared, I’m sure, by many immigrants and emigrants – is that there’s almost no one in Israel who knew me as I was before coming to live here. This makes me feel as if I’m split into two separate parts, and that I will not be whole until those parts become integrated. So by creating these new-old relationships, by bringing my past into my present and my present into my past, I may well be attempting to gather different aspects of myself into one consistent self.
Another possibility is that, having lost my capacity for pure optimism, I’m trying to return to a more innocent time, when I was able to look ahead to a clear and promising future. True, by the time I was a teenager I’d experienced some unusually harsh and traumatic events and situations. But at that time I felt that surely these things were behind me, because I myself had the power to determine my own bright future. Perhaps today I’m attempting to revive that optimistic young self, by treating the vast world of possibilities that were available to me then as open even now, so many years later.
But I believe there’s a third explanation - one that’s harder for me to admit to, because it’s so irrational. I think that I’ve been trying to change the past – in some magical way, to do it all over again. The logic goes like this: If when I was younger I didn’t manage to form friendships with the girls I most admired, perhaps now I’ll know how to succeed. And if I do, I will have “corrected” my life; it will be as if those parts had never happened, and some of the pain and sadness that I carry with me from those years will disappear. And then – so my magical thinking tells me – maybe I’ll then become the person I could have been, and have the life I might have had, had I never gone through that pain.
Why has this attempt at sorcery only started in the past few years? After all, decades went by without my even thinking of trying to “revive” relationships I never really had. I believe the answer goes far beyond the new possibilities opened by the Internet. I think that my need to “fix” my life, to build an alternate narrative for myself, only became urgent once Timmi was diagnosed with the illness that tortured, threatened and ultimately took her life. I could have gone on living with that childhood sadness that I’m trying to erase by seeking new friendships with old acquaintances – the normal and common pain of a girl who was lonelier than she wanted to be. But now I carry inside a kind of pain that can't just be lived with - the unnatural agony of a mother who lost her child to cancer. This agony threatens at times to overwhelm me, if I don't do something to make it disappear. But there's nothing I can do or say to myself rationally that can make it disappear. And so that part of me that still insists on believing in magic tries to do that something, following its own twisted logic by trying to fulfill today the dreams and fantasies of my former life. If I can only succeed in that, then perhaps I'll also be able to wake up from the nightmare of the past ten years to find my family whole, and Timmi peacefully asleep in her bed.
We human beings are amazingly complex and contradictory creatures. We need our past - without roots, we would virtually float off into space. And there's no question but that we need to have a vision for our future to hold on to in difficult times. But ultimately, life must be lived in the here and now. Yes, this really is my life; fantasizing about the life I wish I’d had won’t change that fact, nor will dreaming of the life I hope I’ll have in days to come. Only if I squarely face my present existence will I have any chance of shaping its reality.
And so I pray that God will help me integrate my past, present and future in a healthy and constructive way. I pray for the ability to look back at my past life with the wisdom I’ve gained by living it, and to anchor my friendships and relationships – even my new-old ones – in that wisdom. I pray for the courage once again to look forward to the future with hope, even in the knowledge that there can be no certainty that my hopes will be realized in this life. Most of all, I pray for the ability to live fully in the here and now, and to be fully present for those I love and who love me.
Timmi continues to do quite well, although her mood has been somewhat more unstable; it is easy at this point for her to go quite quickly from euphoria to extreme irritability. I hope as her physical condition stabilizes, her emotional state will as well. At any rate, most of the time she is quite cheerful, and is still busy will her plans. Her physical state has in fact been stable this week, with some GVH but not enough to bother her too much; when it does bother her she handles it quite well. We just hope the GVH is busy successfully fighting the cancer.
We are also happy to let you all know that on the Monday evening two days before the Seder (April 17), Timmi will be appearing in a production being staged by her Theater class from Pelech, and the public is invited. All the proceeds will go to the Society for the War on Cancer. The production will be at the Gerard Behar Center, at 8 or 8:30; full details will follow in a later update. In the meantime, save the evening for a nice break from Pesach* madness.
By the way, Timmi needs a cigarette holder as one of her props. Anyone out there have one or know where to get one?
After the production, Timmi will start studying her friends' notes from her Hebrew literature classes and intends to finish that matriculation exam. After that, we'll see. Does anyone know of a part-time, physically untiring job that she might do? She is extremely responsible and reliable, but has to have enough flexibility in case of medical problems. It would mean a lot to her, though, to start doing something "normal".
Shabbat Shalom to all.
Love,
Sara
*Pesach – Passover.
April 26, 2005
Like most other people of my generation and general background, I’ve spent much of my life looking to the future. Sometimes I’ve looked ahead with worry and dread; other times, with hope and anticipation. Both states of mind can be problematic. When I’ve been consumed by worry, this has kept me from appreciating and enjoying where I am at that particular moment (see “Living in the Moment,” August 2004). But constant anticipation of better things has it's price as well - on occasion, it's had the effect of keeping me from dealing effectively with the difficult realities of the here and now.
But it’s very, very important to look forward. If we don’t worry, we can’t prepare ourselves for what the future may hold. And life without hope for a better future – well, that would be terribly devastating to contemplate. And so we tell ourselves stories of a new and different life to come, tales with happy endings, and these daydreams help us bear up under the hardships with which we must struggle today.
The period leading up to Timmi’s dramatic performance just before Pesach five years ago was one of the happiest in her life (I’ll write more about the performance itself in my next post). She was busy with rehearsals, with her costume, and with letting the world know about the upcoming production. At the same time, she was planning and preparing for all kinds of other activities. She was planning to start driving lessons. She was making plans for taking some of her matriculation exams at the end of that academic year, and even looking for a part-time job. She truly felt that she would soon return to at least a semblance of normal life, that there was a real chance that the worst was behind her.
When I look back now at that time of excitement and anticipation, I’m very grateful for Timmi’s capacity for hope. How much harder life would have been for her had she given in to despair, had she not told herself that her life, which had been so very difficult until then, could and would change for the better. I believe that her capacity for happiness was directly related to this ability to look to the future rather than dwell on the past. In a certain sense, it was this hope that kept her going – kept her alive.
But today I know how Timmi’s story ended. Now, living with that knowledge, when loss and sadness threaten to overwhelm me it’s much harder than it once was to tell myself a tale with a happy ending (see “Losing My Innocence,” two posts before this one). And so, because escape into a fantasy future is no longer an option, I now find myself trying to create an alternative reality in a different way – by breathing new life into my past.
In recent years, I’ve spent much of my spare time thinking about and trying to find people I knew before I met Don and came to live in Israel, and to re-establish relationships with them. In some cases I’ve succeeded. I’m now back in occasional touch with my first childhood friend, with whom I’d lost contact about 23 years before we found each other (actually she found me, but I’ve been very eager to keep the new relationship going). I recently found and have started corresponding with a friend whose family warmly and kindly “adopted” me when I was studying in Paris 31 years ago. I’ve even “reestablished” a relationship with a second cousin whom I’ve probably never met (neither of us is absolutely sure) – but he knew my mother and grandparents, so I think it counts. These relationships have added a new dimension to my present life, and I’m very grateful to have found them.
You will say, of course, that there’s nothing unusual about any of this. Most people my age often wonder “Whatever became of…?”, and with Google it’s now often possible to find out. I’m sure I'm not the first or last fifty-ish person to spend time searching the Net for clues as to what her old acquaintances are doing now. But I’ve gone beyond getting back in touch with distant family and close friends with whom I’d lost contact. Obsessed is probably too strong a word, but I’ve put more emotional resources than is probably healthy in trying to resurrect old relationships. In fact, I'm even trying to establish new relationships with people with whom I wasn’t ever close, but wished I were when I knew them.
And though I’ve discovered that most people are decidedly not interested in reopening past relationships, I persist even in my more hopeless attempts. I’ve even ruined things for myself on occasion by writing about my life in more detail than the average person wants to hear, too early in the correspondence. In one case, I wrote five times after the person on the other end stopped answering my letters - and I still find myself thinking of her today, a year later, and wondering whether to call her when I get to the States this summer.
I’ve asked myself many times why I feel such a strong need to do this. After all, I’m hardly lonely in my present life. I have a strong marriage, wonderful children, a close and vibrant religious community, and supportive and loving friends. I’m even in touch with the friends with whom I was closest in childhood, high school and college. The most sensible thing would be to gratefully concentrate wholly on the people who surround me here and now, and accept that both I and the people I knew way back when have moved on. Why can’t I just leave the past to memory?
I think the answer is a complex mix of many different possibilities, and I don’t doubt that all are true at the same time. One possible explanation – shared, I’m sure, by many immigrants and emigrants – is that there’s almost no one in Israel who knew me as I was before coming to live here. This makes me feel as if I’m split into two separate parts, and that I will not be whole until those parts become integrated. So by creating these new-old relationships, by bringing my past into my present and my present into my past, I may well be attempting to gather different aspects of myself into one consistent self.
Another possibility is that, having lost my capacity for pure optimism, I’m trying to return to a more innocent time, when I was able to look ahead to a clear and promising future. True, by the time I was a teenager I’d experienced some unusually harsh and traumatic events and situations. But at that time I felt that surely these things were behind me, because I myself had the power to determine my own bright future. Perhaps today I’m attempting to revive that optimistic young self, by treating the vast world of possibilities that were available to me then as open even now, so many years later.
But I believe there’s a third explanation - one that’s harder for me to admit to, because it’s so irrational. I think that I’ve been trying to change the past – in some magical way, to do it all over again. The logic goes like this: If when I was younger I didn’t manage to form friendships with the girls I most admired, perhaps now I’ll know how to succeed. And if I do, I will have “corrected” my life; it will be as if those parts had never happened, and some of the pain and sadness that I carry with me from those years will disappear. And then – so my magical thinking tells me – maybe I’ll then become the person I could have been, and have the life I might have had, had I never gone through that pain.
Why has this attempt at sorcery only started in the past few years? After all, decades went by without my even thinking of trying to “revive” relationships I never really had. I believe the answer goes far beyond the new possibilities opened by the Internet. I think that my need to “fix” my life, to build an alternate narrative for myself, only became urgent once Timmi was diagnosed with the illness that tortured, threatened and ultimately took her life. I could have gone on living with that childhood sadness that I’m trying to erase by seeking new friendships with old acquaintances – the normal and common pain of a girl who was lonelier than she wanted to be. But now I carry inside a kind of pain that can't just be lived with - the unnatural agony of a mother who lost her child to cancer. This agony threatens at times to overwhelm me, if I don't do something to make it disappear. But there's nothing I can do or say to myself rationally that can make it disappear. And so that part of me that still insists on believing in magic tries to do that something, following its own twisted logic by trying to fulfill today the dreams and fantasies of my former life. If I can only succeed in that, then perhaps I'll also be able to wake up from the nightmare of the past ten years to find my family whole, and Timmi peacefully asleep in her bed.
We human beings are amazingly complex and contradictory creatures. We need our past - without roots, we would virtually float off into space. And there's no question but that we need to have a vision for our future to hold on to in difficult times. But ultimately, life must be lived in the here and now. Yes, this really is my life; fantasizing about the life I wish I’d had won’t change that fact, nor will dreaming of the life I hope I’ll have in days to come. Only if I squarely face my present existence will I have any chance of shaping its reality.
And so I pray that God will help me integrate my past, present and future in a healthy and constructive way. I pray for the ability to look back at my past life with the wisdom I’ve gained by living it, and to anchor my friendships and relationships – even my new-old ones – in that wisdom. I pray for the courage once again to look forward to the future with hope, even in the knowledge that there can be no certainty that my hopes will be realized in this life. Most of all, I pray for the ability to live fully in the here and now, and to be fully present for those I love and who love me.
Saturday, April 16, 2005
A Good Week
March 31, 2000
This has been a truly good week from Timmi's point of view. She no longer suffers from the stomach problems that the GVH had caused her, and is back to eating enthusiastically. She also seems able to drink enough now. Also, she has lowered yet again the dose of the painkilling patches that she wears, a sign that she may still have enough GVH left for it to be fighting the cancer. (Also her skin is dry and sensitive, which is not so comfortable but a sign perhaps that the GVH is still active.)
But the best part is her mood - she has been feeling very good, especially since her doctors told her that she could start going out again to public places such as movies and restaurants. So far she's been out three times this week, and is planning another trip to the mall today. She is also making all kinds of plans – finishing matriculation exams, appearing in the last production of her Theater class's play in April, etc. She is also very interested in going abroad again (impatient is the word, actually). She really feels like she wants and is able to resume a more normal life. Yesterday evening she even did, on her own initiative, some housework while we were out - a real sign of her good mood and the strength she's feeling.
She also expressed the desire to go away as a family during Chol Ha-Moed,* and when I pointed out that she would not be able to do a lot of vacation-type things, answered that she would rather travel in a limited way than not travel at all, and that she wants the rest of the family to have as good a time as possible, so not to worry if she can't participate in every activity. Of course, we will try to do things that she can do with us. By the way, she wants us to go to the Zichron - Caesaria area; does anyone have any suggestions as to a hotel where we could get reservations for Chol Ha-Moed at this relatively late date? I've started looking, and it's a problem.
We just hope, of course, that this trend will continue and that there will be no more surprises of the kind we've all been hit with so many times in the past.
Shabbat Shalom to all.
Love,
Sara
*Chol Ha-Moed – the five intermediate days between the holidays of the first and last days of Pesach (Passover).
April 14, 2005
This week was lovely; Don and I just got back from a two-night vacation that we took in and around Beit She’an, a 5,000-year-old city in Israel’s north. Like many other cities in Israel, Beit She’an has been home to Canaanites, Jews (King David conquered it somewhere around 1,000 B.C.E.), Romans, Byzantines, Arabs and now, again, Jews.
Besides the fascinating Roman-Byzantine ruins – which have been beautifully reconstructed to give a real feel for the ancient city – there are several natural and historical attractions in the area. Taking our bird and flower guides, we visited a few sites on the Gilboa, where King Saul and his sons were defeated and slain by the Philistines (the Book of Samuel relates that their bodies were then displayed on the Beit She’an city walls). We were a bit late for this area’s most impressive flowers, which generally bloom in March. But we were more successful with the birds; amateurs as we are, we still found and identified several types that we hadn’t seen (or, more likely, noticed) before. We also visited the Sahne, a very large natural spring and pool surrounded by a grassy and shaded area for picnics, games and just plain lazing around. We’ve been to the Sahne several times, though up to now always with the children. There’s always a lovely, relaxed ambiance there, with Jewish and Arab families from the area picnicking and swimming side by side.
Traveling around Israel is something of a national obsession, and has been since the founding of the state. Natural sites are full to bursting on holidays, which is why Don and I always try to use some of our vacation days for trips during the work week. We thought we’d miss the Passover rush this time, but almost everywhere we went there were buses full of boisterous children on their annual class trips. Even so, we managed to find a few places where we could be the only two people on the trail - for me, a foretaste of heaven.
I grew up in New York City, with almost no experience of nature. Although we lived in Coney Island, on the beach (literally; we didn’t have to cross any streets to get there), there was very little green in the landscape of my childhood. And we couldn’t afford to go away for family vacations. The first time I ever saw expanses of grass, rolling hills, and fields of wildflowers was at the age of 16, when I spent the summer at the Cornell University program for high school juniors. I was blown away. I'd always longed to spend quiet time in nature; in sixth grade, I wrote a poem in which I fantasized waking every morning at dawn and walking outside into a world of sparkling grass and an invitingly blue lake. A far cry from the housing project I lived in. So when I found myself that summer actually eating blackberries straight off a tree - well, you can imagine how I felt.
And so when I got to Israel, I very enthusiastically assimilated into the culture of nature travel. As soon we got our first car, Don and I began taking the children for family trips around Israel. This tiny country contains amazingly diverse natural scenery, from the lush Galilee to the Negev desert to the coral reefs of Eilat. And, of course, a long and rich history - the Dead Sea caves, Crusader fortresses, Roman ruins, ancient synagogues… the list is virtually endless. But going on vacation has meant far more than the opportunity to see the country’s magnificent landscapes and learn about its turbulent past. It’s given our family – and, sometimes, Don and me alone – the chance to be with each other away from the pressures of day-to-day life. The trips have sometimes been incredibly exhausting; with so many children so close in age, how could they be otherwise? But what’s remained for all of us is the warm feeling of having been together through something special – even the children’s fights in the back seat have become just one more family memory to laugh about.
I know all this probably sounds obvious and banal to many people. But the fact is that I will never take any of it for granted – living so near to beautiful natural surroundings, adding my own roots to a living historical continuum, and (most of all) having a close and loving family with whom to share it all.
Some of my strongest memories of Timmi are connected to away-from-home vacations. Timmi, racing her sisters to the snack bar when we would stop for ice cream in the Jordan valley after driving through the Judean Desert with five kids packed into a hatchback Renault – without air conditioning. (This was in the Israel of the 80s, when just about no one could afford air conditioning. We got all five kids into the car by belting baby seats in the car’s hatchback space for Timmi, who was a toddler then, and for Elaine. We hooked up a fan that blew straight onto their faces, making them more comfortable than anyone else in the car.) Timmi taking off her clothes and jumping joyfully into the Sahne or some other natural pool. Timmi counting how many species of flowers we could find in just one small field (in Israel, the number can reach fifty). Timmi setting up her tent and taking Elaine by the hand to explore our favorite campground in the northern Galilee.
Then, that August camping trip when Timmi cried from pain for almost the full three days. She had already seen doctors and undergone many inconclusive medical tests, but we were still three months away from diagnosis of her cancer. Timmi's illness and the treatments she underwent prevented us from going away for a long time after that August trip. But when we were finally able to travel again, her enthusiasm redoubled. In an echo of my own deep appreciation for nature and for travel after missing out on these experiences when I was a child, Timmi – who had grown up taking nature trips with family, school, and Scouts – stopped taking them for granted. And Don and I came to appreciate all the more keenly every precious minute with our children, and with each other.
The Pesach trip of five years ago was our last with Timmi. Today, when I travel with Don or our children, I never fail to think how she would have loved the trip's scenery, its animals and birds, its flowers and all its experiences. I’m also reminded that we will never again take a full family trip; there will always be at least one child missing. But my sadness at those thoughts is tempered by the comfort of finding a memory of Timmi in every place we visit. Here’s where she did… There’s where she said… Here’s where we all… That’s just like the place where she…
As the years have passed since Timmi left us, the comfort of finding Timmi's spirit in the most unexpected places has increasingly enabled me to bear the sadness of her physical absence. And my intense appreciation of every chance I receive to get away with Don or any of my children further lightens the burden. And so now, five years after that last trip with Timmi, I can say upon coming home from just about any vacation, “This has been a truly good week.”
This has been a truly good week from Timmi's point of view. She no longer suffers from the stomach problems that the GVH had caused her, and is back to eating enthusiastically. She also seems able to drink enough now. Also, she has lowered yet again the dose of the painkilling patches that she wears, a sign that she may still have enough GVH left for it to be fighting the cancer. (Also her skin is dry and sensitive, which is not so comfortable but a sign perhaps that the GVH is still active.)
But the best part is her mood - she has been feeling very good, especially since her doctors told her that she could start going out again to public places such as movies and restaurants. So far she's been out three times this week, and is planning another trip to the mall today. She is also making all kinds of plans – finishing matriculation exams, appearing in the last production of her Theater class's play in April, etc. She is also very interested in going abroad again (impatient is the word, actually). She really feels like she wants and is able to resume a more normal life. Yesterday evening she even did, on her own initiative, some housework while we were out - a real sign of her good mood and the strength she's feeling.
She also expressed the desire to go away as a family during Chol Ha-Moed,* and when I pointed out that she would not be able to do a lot of vacation-type things, answered that she would rather travel in a limited way than not travel at all, and that she wants the rest of the family to have as good a time as possible, so not to worry if she can't participate in every activity. Of course, we will try to do things that she can do with us. By the way, she wants us to go to the Zichron - Caesaria area; does anyone have any suggestions as to a hotel where we could get reservations for Chol Ha-Moed at this relatively late date? I've started looking, and it's a problem.
We just hope, of course, that this trend will continue and that there will be no more surprises of the kind we've all been hit with so many times in the past.
Shabbat Shalom to all.
Love,
Sara
*Chol Ha-Moed – the five intermediate days between the holidays of the first and last days of Pesach (Passover).
April 14, 2005
This week was lovely; Don and I just got back from a two-night vacation that we took in and around Beit She’an, a 5,000-year-old city in Israel’s north. Like many other cities in Israel, Beit She’an has been home to Canaanites, Jews (King David conquered it somewhere around 1,000 B.C.E.), Romans, Byzantines, Arabs and now, again, Jews.
Besides the fascinating Roman-Byzantine ruins – which have been beautifully reconstructed to give a real feel for the ancient city – there are several natural and historical attractions in the area. Taking our bird and flower guides, we visited a few sites on the Gilboa, where King Saul and his sons were defeated and slain by the Philistines (the Book of Samuel relates that their bodies were then displayed on the Beit She’an city walls). We were a bit late for this area’s most impressive flowers, which generally bloom in March. But we were more successful with the birds; amateurs as we are, we still found and identified several types that we hadn’t seen (or, more likely, noticed) before. We also visited the Sahne, a very large natural spring and pool surrounded by a grassy and shaded area for picnics, games and just plain lazing around. We’ve been to the Sahne several times, though up to now always with the children. There’s always a lovely, relaxed ambiance there, with Jewish and Arab families from the area picnicking and swimming side by side.
Traveling around Israel is something of a national obsession, and has been since the founding of the state. Natural sites are full to bursting on holidays, which is why Don and I always try to use some of our vacation days for trips during the work week. We thought we’d miss the Passover rush this time, but almost everywhere we went there were buses full of boisterous children on their annual class trips. Even so, we managed to find a few places where we could be the only two people on the trail - for me, a foretaste of heaven.
I grew up in New York City, with almost no experience of nature. Although we lived in Coney Island, on the beach (literally; we didn’t have to cross any streets to get there), there was very little green in the landscape of my childhood. And we couldn’t afford to go away for family vacations. The first time I ever saw expanses of grass, rolling hills, and fields of wildflowers was at the age of 16, when I spent the summer at the Cornell University program for high school juniors. I was blown away. I'd always longed to spend quiet time in nature; in sixth grade, I wrote a poem in which I fantasized waking every morning at dawn and walking outside into a world of sparkling grass and an invitingly blue lake. A far cry from the housing project I lived in. So when I found myself that summer actually eating blackberries straight off a tree - well, you can imagine how I felt.
And so when I got to Israel, I very enthusiastically assimilated into the culture of nature travel. As soon we got our first car, Don and I began taking the children for family trips around Israel. This tiny country contains amazingly diverse natural scenery, from the lush Galilee to the Negev desert to the coral reefs of Eilat. And, of course, a long and rich history - the Dead Sea caves, Crusader fortresses, Roman ruins, ancient synagogues… the list is virtually endless. But going on vacation has meant far more than the opportunity to see the country’s magnificent landscapes and learn about its turbulent past. It’s given our family – and, sometimes, Don and me alone – the chance to be with each other away from the pressures of day-to-day life. The trips have sometimes been incredibly exhausting; with so many children so close in age, how could they be otherwise? But what’s remained for all of us is the warm feeling of having been together through something special – even the children’s fights in the back seat have become just one more family memory to laugh about.
I know all this probably sounds obvious and banal to many people. But the fact is that I will never take any of it for granted – living so near to beautiful natural surroundings, adding my own roots to a living historical continuum, and (most of all) having a close and loving family with whom to share it all.
Some of my strongest memories of Timmi are connected to away-from-home vacations. Timmi, racing her sisters to the snack bar when we would stop for ice cream in the Jordan valley after driving through the Judean Desert with five kids packed into a hatchback Renault – without air conditioning. (This was in the Israel of the 80s, when just about no one could afford air conditioning. We got all five kids into the car by belting baby seats in the car’s hatchback space for Timmi, who was a toddler then, and for Elaine. We hooked up a fan that blew straight onto their faces, making them more comfortable than anyone else in the car.) Timmi taking off her clothes and jumping joyfully into the Sahne or some other natural pool. Timmi counting how many species of flowers we could find in just one small field (in Israel, the number can reach fifty). Timmi setting up her tent and taking Elaine by the hand to explore our favorite campground in the northern Galilee.
Then, that August camping trip when Timmi cried from pain for almost the full three days. She had already seen doctors and undergone many inconclusive medical tests, but we were still three months away from diagnosis of her cancer. Timmi's illness and the treatments she underwent prevented us from going away for a long time after that August trip. But when we were finally able to travel again, her enthusiasm redoubled. In an echo of my own deep appreciation for nature and for travel after missing out on these experiences when I was a child, Timmi – who had grown up taking nature trips with family, school, and Scouts – stopped taking them for granted. And Don and I came to appreciate all the more keenly every precious minute with our children, and with each other.
The Pesach trip of five years ago was our last with Timmi. Today, when I travel with Don or our children, I never fail to think how she would have loved the trip's scenery, its animals and birds, its flowers and all its experiences. I’m also reminded that we will never again take a full family trip; there will always be at least one child missing. But my sadness at those thoughts is tempered by the comfort of finding a memory of Timmi in every place we visit. Here’s where she did… There’s where she said… Here’s where we all… That’s just like the place where she…
As the years have passed since Timmi left us, the comfort of finding Timmi's spirit in the most unexpected places has increasingly enabled me to bear the sadness of her physical absence. And my intense appreciation of every chance I receive to get away with Don or any of my children further lightens the burden. And so now, five years after that last trip with Timmi, I can say upon coming home from just about any vacation, “This has been a truly good week.”
Saturday, April 09, 2005
Losing My Innocence
March 24, 2000
Now I'll give a fuller version of the latest news. As I wrote last time, Timmi is now (as of Monday) out of the hospital, the GVH having somewhat stabilized. Last Shabbat she was also at home for "leave", and it was really great - Timmi was in a really good mood, and not only was there no friction between her and her siblings, but they all got along fantastically and truly enjoyed each other's company. It should always be this way, as I'm sure many a parent has said even in normal circumstances.
The good mood has kept up, despite physical ups and downs since Monday. It seems this GVH stuff isn't so easy. But we knew that GVH is unpredictable, changeable and not so easy to control, so the main thing is that we are now in the place we wanted to be. As I mentioned in my last update, Timmi is experiencing less pain and so it may well be that the GVH is fighting the cancer as we had hoped and continue to hope it will. She has even reduced the dosage of her narcotic patches, which is always a good sign.
The problem is still that it is difficult for Timmi to drink; on the one hand, she wants to drink because her mouth is always dry, but on the other hand drinking quite often makes her feel nauseated. So far, it seems she's drinking enough not to dehydrate, but she has to be very careful in order not to repeat the kidney failure she had last time she dehydrated, because of the cyclosporin that she must take to regulate the GVH.
Yesterday, though, I was out with her (in the Malcha Mall, not my favorite place but a place outside the house) for an hour and a half, and it didn't exhaust her. Another good sign!
She is now going to try and complete at least one matriculation exam, so that she'll have less to make up next year. Altogether, she is now into planning the next steps, when after a few months she will have a fully functioning immune system, and hopefully the GVH will be stable enough for her to resume a fairly normal life.
Shabbat Shalom.
Love,
Sara
April 8, 2005
I’ve been reading and rereading this last update for the past several days, trying to get a handle on what to write for this post. There are so many possibilities. On a happy note, I could focus on my gratitude that Timmi’s relationships with her brothers and sisters were ultimately strong enough to weather the tensions that resulted from her illness. I could write about Timmi’s drive to live her life as fully as she could, despite her heavy and constant physical and emotional difficulties. But as I read the update today, the happy experiences that I recorded there are filtered through my knowledge and memory of the events that came afterward. I know how this story ended, and in many ways that knowledge has profoundly changed how I look at the world.
When I opened my computer at work Thursday morning, I found a Power Point presentation a client had sent me. Against a background of beautiful color photographs of peaceful natural scenes, it tells the story of Omri, a three-year-old Israeli boy. Some time ago, Omri began to experience unexplained pain in his feet, which persisted and then spread to other parts of his body. He soon began to lose his sight as well. As soon as I read this description of Omri's symptoms, I had no doubt as to where the story was leading. Omri is suffering from a rare and aggressive form of lymphoma that has metastasized to his brain, spinal cord and bone marrow.
It was very hard to keep reading Omri’s story, but I found myself unable to close the file until the presentation ended. I learned that although Omri had enjoyed a brief remission, his cancer relapsed and metastasized while he was still in active chemotherapy. His family is now trying to organize a bone-marrow drive to find a donor for a transplant (no potential donor on the international database matches his), and is seeking both potential donors willing to be tested, and contributions to finance the tests.
Since Thursday, I’ve been haunted by a persistent sadness - for Omri and his parents, but also for the way I myself now read his narrative. Once, I would have followed Omri’s story with the intense hope that a way could and would be found to save his life. I would have thought, modern medicine is so amazing – if only a matching donor can be found, Omri still has a chance! But from where I am now, that is no longer possible. The quixotic optimism that drives Omri’s parents to seek to raise a million dollars in order to try one last, very far-fetched possibility reminds me too much of my own carefully cultivated hopefulness in the face of the ever-increasing probability that we were going to lose Timmi. I just can't summon up that kind of trusting hopefulness any longer. When I lost my daughter, I also lost a great deal of my innocence.
All those good signs that we held onto! Timmi’s periods of energy, her fighting spirit, her fierce will to live – all these were supposed to increase her chance of beating the cancer. And all those promising therapies to try! New experimental treatments that had shown good preliminary results. Natural foods and supplements that would strengthen her immune system and help it fight the cancer. Like naïve children hearing a bedtime story, we never completely stopped believing in the possibility of a happy ending, however improbable we knew such an ending to be as time went on without those therapies delivering on their promises, without those wonderful signs turning into concrete reality.
I wish I were not completely certain that, short of a true miracle, Omri - like many, many other completely innocent children - will soon be joining Timmi in the next world.
I wish I were still able to believe in fairy-tale endings.
Now I'll give a fuller version of the latest news. As I wrote last time, Timmi is now (as of Monday) out of the hospital, the GVH having somewhat stabilized. Last Shabbat she was also at home for "leave", and it was really great - Timmi was in a really good mood, and not only was there no friction between her and her siblings, but they all got along fantastically and truly enjoyed each other's company. It should always be this way, as I'm sure many a parent has said even in normal circumstances.
The good mood has kept up, despite physical ups and downs since Monday. It seems this GVH stuff isn't so easy. But we knew that GVH is unpredictable, changeable and not so easy to control, so the main thing is that we are now in the place we wanted to be. As I mentioned in my last update, Timmi is experiencing less pain and so it may well be that the GVH is fighting the cancer as we had hoped and continue to hope it will. She has even reduced the dosage of her narcotic patches, which is always a good sign.
The problem is still that it is difficult for Timmi to drink; on the one hand, she wants to drink because her mouth is always dry, but on the other hand drinking quite often makes her feel nauseated. So far, it seems she's drinking enough not to dehydrate, but she has to be very careful in order not to repeat the kidney failure she had last time she dehydrated, because of the cyclosporin that she must take to regulate the GVH.
Yesterday, though, I was out with her (in the Malcha Mall, not my favorite place but a place outside the house) for an hour and a half, and it didn't exhaust her. Another good sign!
She is now going to try and complete at least one matriculation exam, so that she'll have less to make up next year. Altogether, she is now into planning the next steps, when after a few months she will have a fully functioning immune system, and hopefully the GVH will be stable enough for her to resume a fairly normal life.
Shabbat Shalom.
Love,
Sara
April 8, 2005
I’ve been reading and rereading this last update for the past several days, trying to get a handle on what to write for this post. There are so many possibilities. On a happy note, I could focus on my gratitude that Timmi’s relationships with her brothers and sisters were ultimately strong enough to weather the tensions that resulted from her illness. I could write about Timmi’s drive to live her life as fully as she could, despite her heavy and constant physical and emotional difficulties. But as I read the update today, the happy experiences that I recorded there are filtered through my knowledge and memory of the events that came afterward. I know how this story ended, and in many ways that knowledge has profoundly changed how I look at the world.
When I opened my computer at work Thursday morning, I found a Power Point presentation a client had sent me. Against a background of beautiful color photographs of peaceful natural scenes, it tells the story of Omri, a three-year-old Israeli boy. Some time ago, Omri began to experience unexplained pain in his feet, which persisted and then spread to other parts of his body. He soon began to lose his sight as well. As soon as I read this description of Omri's symptoms, I had no doubt as to where the story was leading. Omri is suffering from a rare and aggressive form of lymphoma that has metastasized to his brain, spinal cord and bone marrow.
It was very hard to keep reading Omri’s story, but I found myself unable to close the file until the presentation ended. I learned that although Omri had enjoyed a brief remission, his cancer relapsed and metastasized while he was still in active chemotherapy. His family is now trying to organize a bone-marrow drive to find a donor for a transplant (no potential donor on the international database matches his), and is seeking both potential donors willing to be tested, and contributions to finance the tests.
Since Thursday, I’ve been haunted by a persistent sadness - for Omri and his parents, but also for the way I myself now read his narrative. Once, I would have followed Omri’s story with the intense hope that a way could and would be found to save his life. I would have thought, modern medicine is so amazing – if only a matching donor can be found, Omri still has a chance! But from where I am now, that is no longer possible. The quixotic optimism that drives Omri’s parents to seek to raise a million dollars in order to try one last, very far-fetched possibility reminds me too much of my own carefully cultivated hopefulness in the face of the ever-increasing probability that we were going to lose Timmi. I just can't summon up that kind of trusting hopefulness any longer. When I lost my daughter, I also lost a great deal of my innocence.
All those good signs that we held onto! Timmi’s periods of energy, her fighting spirit, her fierce will to live – all these were supposed to increase her chance of beating the cancer. And all those promising therapies to try! New experimental treatments that had shown good preliminary results. Natural foods and supplements that would strengthen her immune system and help it fight the cancer. Like naïve children hearing a bedtime story, we never completely stopped believing in the possibility of a happy ending, however improbable we knew such an ending to be as time went on without those therapies delivering on their promises, without those wonderful signs turning into concrete reality.
I wish I were not completely certain that, short of a true miracle, Omri - like many, many other completely innocent children - will soon be joining Timmi in the next world.
I wish I were still able to believe in fairy-tale endings.
Friday, April 01, 2005
Balance
March 16, 2000
Timmi is still hospitalized, as she is still unable to eat and keep down any significant amount of food, or drink enough to keep from dehydrating. Having lost about three kilos since entering the hospital (12 days ago), this evening she started getting TPN – intravenous nourishment.
The good news, though, is that it seems that the cause of her stomach inflammation is GVH; although the rash that had originally indicated the GVH has disappeared, it turns out that the GVH itself has not only not disappeared but is actually a bit too strong. (Just to remind you, the reason this is good news is that we want some GVH, which is an immunological response that we hope will fight her cancer.) She has therefore started receiving intravenous steroids as well as the anti-GVH drug cyclosporin. She will continue to receive the steroids until her clinical condition plus blood tests show that the GVH is under control; hopefully when this happens she will be able to eat and drink again.
Her mood has been quite good, as a general rule, since returning to the hospital. Unfortunately, the steroids will probably make her quite irritable and will almost certainly make it even more difficult for her than it already is to sleep. So for many reasons, we hope the medications will quickly be effective so that she will be able to stop taking the steroids as soon as possible.
Staying with Timmi all day most days in the hospital has been quite tiring for me (not to mention stressful, especially when we had no clue as to what was causing her symptoms), but her improved mood – together with my newfound serenity concerning my lack of ability to do much, other than be there, for her - has made this past week a time for feeling close despite our circumstances. I don't know how long it will last, but a period like this will give me something to hold on to the next time things get harder.
March 21, 2000
A quick update but I'm sure you'll all be glad to hear that Timmi was released yesterday from the hospital, and is now able to eat and (with some difficulty but sufficiently) drink. Also, the GVH seems to be having some effect and the cancer pains that Timmi was having have been reduced; we are trying now to see whether we can lower the dose of her painkiller patches.
Purim Sameah!*
*Happy Purim (see my last two posts).
March 29, 2005
Maimonides, the great 12th-century rabbi, physician, and philosopher, held that the most important factor for a healthy body, as well as for a healthy soul, is moderation in all things, which in turn leads to a balanced life. I believe that this precept remains true to this day. I’ve been at my best when my life has reflected a reasonable balance among all my obligations, pleasures and emotions. The trick, of course, is finding this balance – and keeping it. This was one of the most difficult challenges for our family when Timmi was ill, and an almost impossible one in the aftermath of her death. Today, many of the elements in my life – the complex, many-faceted life of a modern, educated mother – are fairly well balanced, but there are still many times when everything feels out of synch, and I lose my eqilibrium. What I hope is that the journey I will begin this summer toward an eventual career in social work will help me finally find, to the extent such a thing is possible, the balance that my life has been missing since Timmi died.
In many ways, Timmi’s struggle against her cancer was a balancing act. Physically, we wanted her various treatments to be effective, but not to kill or maim her with their side-effects. This dilemma reached its peak, of course, during and after her two bone marrow transplants. A transplant can certainly save a life, but it can also be deadly for several reasons. If the new bone marrow fails to “take,” the patient’s original marrow, which was destroyed before the transplant, will fail to regenerate and no new blood cells will be created. If the transplant "takes," but the new bone marrow does not completely match the old, the new blood may reject the patient’s body, in a process known as Graft Versus Host Disease (the GVH to which I kept referring in my updates). If the match is too incomplete, and the GVH is too strong, it may be fatal. But if the new bone marrow too completely matches the old, and no GVH results, the treatment will be ineffective against the cancer. And so Timmi's treatment was an ongoing attempt to attain just the right level of GVH, so that it would attack the cancer cells but not her other organs. This meant a constant adjustment of the dose of the various medications that she took to prevent the reaction from becoming too strong. Also, there were many times when she was taking a whole “chain” of medications – med A against the cancer, med B against the side effects of med A, med C against the side-effects of med B, and so on. Don once calculated that at one point there were six medications in this chain!
This constant struggle for balance was refected in the emotional sphere as well. We had to work all the time to keep Timmi as optimistic at possible - but while still impressing on her the gravity of her condition, so that she would cooperate with her treatment even when it was hard for her. (During her first illness, when she was twelve, for example, she had to take very unpleasant medications, and to have needles inserted into her veins unreasaonably often. Naturally enough, she sometimes objected strenuously.)
Socially, Timmi struggled with the opposition between her normal adolescent desire to fit in with her healthy peers, and the fact that her experiences had left their indelible mark, making her undeniably different from other girls her age. There were many times, she told me, when she was sitting with a group of girls talking about the usual teenage concerns, and would start wondering, “What on Earth are they talking about? Why do they care?” So she tried to balance her behavior, joining in the conversation just enough to feel that she had relationships with other girls her age, even if their communication didn’t touch on the issues that truly concerned her.
In parallel, each member of our family struggled with her/his own conflicting needs, desires and obligations. Don and I needed to care for Timmi and at the same time respond to the other children’s needs, continue to put food on the table, and somehow manage to tend to our own needs at least to the extent needed to avoid collapsing. And each of our children had to find an equilibrium in their relationships with Timmi, and with us. Their love and empathy for Timmi caused them to try to do what they could for her, and to understand why we expected more of them (in the older girls’ case) or had less time for them (in the case of the younger children). But their empathy and understanding were complicted by their natural feelings of resentment and anger. On the one hand, how can a child (or even a teenager) feel pure empathy for a person who is taking up so much time and attention, and such a large part of the family's other resources? But on the other, how can she be angry with a person - and a beloved sister, at that - who is suffering so much, and who may be taken at any time? There was no simple solution to these dilemmas.
As I’ve mentioned many times in this blog, after Timmi’s death my entire world went out of kilter, and for a very long time I felt as if my life was completely unbalanced – unhinged, as Robert Avrech so aptly expressed it in his blog Seraphic Secret. Not only did I lose Timmi herself, but I lost a whole world of experience, as the activities on which I’d been spending a great deal of my time suddenly became irrelevant; I literally didn’t know what to do with myself. The only way I was able to rebuild a sense of balance in my life was to focus on one thing at a time. If one of the children needed me, I would devote myself wholly to responding to that child, and tried to avoid becoming overwhelmed with thoughts of how devastating Timmi's illness and death had been for all of my children. If a friend suggested that we meet, I would concentrate on trying to tell her about myself - mostly about how my life had changed - and to hear about her life, and not on my feeling that an impenetrable wall had arisen between me and anyone who had not lost a child. If an opportunity to do some work (for example, a short translation or editing job) came up, I would focus on that one activity, without thinking about whether I would ever be able to return to a regular work schedule.
In this way, I’ve slowly and painfully regained a certain equilibrium, and am now able to handle several hours a day of work, more or less carry out my domestic responsibilities, spend time with my children and Don, and even find some time for myself – to read, or meet with friends. But there is still at least one time every day when it doesn’t feel right to be doing anything. I can’t concentrate on work or on reading, and don’t feel up to talking with anyone. At those times, I feel a certain panic, as if I’m lost in a wilderness somewhere without basic survival tools.
Although I’m very excited about my summer plans, I'm also quite anxious at the prospect of spending more than two months away from my family, in a city (New York) in which I haven’t lived since I was 17, surrounded by people with whom I don’t have a longstanding relationship. My lifestyle will be almost completely different than it is now - I'll be a full-time students as opposed to a working mother. I’m afraid all that sudden change will throw me off, so that I won’t be able to do even what I need to in order to finish this summer, let alone manage the two-plus years of the program.
But I hold on to the reason I’m going to New York. I'm going in order to learn to do what I can with my own experience going through Timmi's illness and death together with my family, to help other families get through that experience whole. I think there's a good chance that this sense of purpose will pull me together and give me the direction and the energy I’ll need to get the most I can out of my studies. And in the long run, I hope that my new career will fill my need to reconstruct, even if imperfectly, the world I lost when Timmi died.
With Timmi gone, my life will never be truly balanced again. But I hope and pray that the journey I’m starting this coming summer will ultimately bring me - and, perhaps, at least some of my family - to a new equilibrium, from which I’ll be able to help other families find their own balance.
Timmi is still hospitalized, as she is still unable to eat and keep down any significant amount of food, or drink enough to keep from dehydrating. Having lost about three kilos since entering the hospital (12 days ago), this evening she started getting TPN – intravenous nourishment.
The good news, though, is that it seems that the cause of her stomach inflammation is GVH; although the rash that had originally indicated the GVH has disappeared, it turns out that the GVH itself has not only not disappeared but is actually a bit too strong. (Just to remind you, the reason this is good news is that we want some GVH, which is an immunological response that we hope will fight her cancer.) She has therefore started receiving intravenous steroids as well as the anti-GVH drug cyclosporin. She will continue to receive the steroids until her clinical condition plus blood tests show that the GVH is under control; hopefully when this happens she will be able to eat and drink again.
Her mood has been quite good, as a general rule, since returning to the hospital. Unfortunately, the steroids will probably make her quite irritable and will almost certainly make it even more difficult for her than it already is to sleep. So for many reasons, we hope the medications will quickly be effective so that she will be able to stop taking the steroids as soon as possible.
Staying with Timmi all day most days in the hospital has been quite tiring for me (not to mention stressful, especially when we had no clue as to what was causing her symptoms), but her improved mood – together with my newfound serenity concerning my lack of ability to do much, other than be there, for her - has made this past week a time for feeling close despite our circumstances. I don't know how long it will last, but a period like this will give me something to hold on to the next time things get harder.
March 21, 2000
A quick update but I'm sure you'll all be glad to hear that Timmi was released yesterday from the hospital, and is now able to eat and (with some difficulty but sufficiently) drink. Also, the GVH seems to be having some effect and the cancer pains that Timmi was having have been reduced; we are trying now to see whether we can lower the dose of her painkiller patches.
Purim Sameah!*
*Happy Purim (see my last two posts).
March 29, 2005
Maimonides, the great 12th-century rabbi, physician, and philosopher, held that the most important factor for a healthy body, as well as for a healthy soul, is moderation in all things, which in turn leads to a balanced life. I believe that this precept remains true to this day. I’ve been at my best when my life has reflected a reasonable balance among all my obligations, pleasures and emotions. The trick, of course, is finding this balance – and keeping it. This was one of the most difficult challenges for our family when Timmi was ill, and an almost impossible one in the aftermath of her death. Today, many of the elements in my life – the complex, many-faceted life of a modern, educated mother – are fairly well balanced, but there are still many times when everything feels out of synch, and I lose my eqilibrium. What I hope is that the journey I will begin this summer toward an eventual career in social work will help me finally find, to the extent such a thing is possible, the balance that my life has been missing since Timmi died.
In many ways, Timmi’s struggle against her cancer was a balancing act. Physically, we wanted her various treatments to be effective, but not to kill or maim her with their side-effects. This dilemma reached its peak, of course, during and after her two bone marrow transplants. A transplant can certainly save a life, but it can also be deadly for several reasons. If the new bone marrow fails to “take,” the patient’s original marrow, which was destroyed before the transplant, will fail to regenerate and no new blood cells will be created. If the transplant "takes," but the new bone marrow does not completely match the old, the new blood may reject the patient’s body, in a process known as Graft Versus Host Disease (the GVH to which I kept referring in my updates). If the match is too incomplete, and the GVH is too strong, it may be fatal. But if the new bone marrow too completely matches the old, and no GVH results, the treatment will be ineffective against the cancer. And so Timmi's treatment was an ongoing attempt to attain just the right level of GVH, so that it would attack the cancer cells but not her other organs. This meant a constant adjustment of the dose of the various medications that she took to prevent the reaction from becoming too strong. Also, there were many times when she was taking a whole “chain” of medications – med A against the cancer, med B against the side effects of med A, med C against the side-effects of med B, and so on. Don once calculated that at one point there were six medications in this chain!
This constant struggle for balance was refected in the emotional sphere as well. We had to work all the time to keep Timmi as optimistic at possible - but while still impressing on her the gravity of her condition, so that she would cooperate with her treatment even when it was hard for her. (During her first illness, when she was twelve, for example, she had to take very unpleasant medications, and to have needles inserted into her veins unreasaonably often. Naturally enough, she sometimes objected strenuously.)
Socially, Timmi struggled with the opposition between her normal adolescent desire to fit in with her healthy peers, and the fact that her experiences had left their indelible mark, making her undeniably different from other girls her age. There were many times, she told me, when she was sitting with a group of girls talking about the usual teenage concerns, and would start wondering, “What on Earth are they talking about? Why do they care?” So she tried to balance her behavior, joining in the conversation just enough to feel that she had relationships with other girls her age, even if their communication didn’t touch on the issues that truly concerned her.
In parallel, each member of our family struggled with her/his own conflicting needs, desires and obligations. Don and I needed to care for Timmi and at the same time respond to the other children’s needs, continue to put food on the table, and somehow manage to tend to our own needs at least to the extent needed to avoid collapsing. And each of our children had to find an equilibrium in their relationships with Timmi, and with us. Their love and empathy for Timmi caused them to try to do what they could for her, and to understand why we expected more of them (in the older girls’ case) or had less time for them (in the case of the younger children). But their empathy and understanding were complicted by their natural feelings of resentment and anger. On the one hand, how can a child (or even a teenager) feel pure empathy for a person who is taking up so much time and attention, and such a large part of the family's other resources? But on the other, how can she be angry with a person - and a beloved sister, at that - who is suffering so much, and who may be taken at any time? There was no simple solution to these dilemmas.
As I’ve mentioned many times in this blog, after Timmi’s death my entire world went out of kilter, and for a very long time I felt as if my life was completely unbalanced – unhinged, as Robert Avrech so aptly expressed it in his blog Seraphic Secret. Not only did I lose Timmi herself, but I lost a whole world of experience, as the activities on which I’d been spending a great deal of my time suddenly became irrelevant; I literally didn’t know what to do with myself. The only way I was able to rebuild a sense of balance in my life was to focus on one thing at a time. If one of the children needed me, I would devote myself wholly to responding to that child, and tried to avoid becoming overwhelmed with thoughts of how devastating Timmi's illness and death had been for all of my children. If a friend suggested that we meet, I would concentrate on trying to tell her about myself - mostly about how my life had changed - and to hear about her life, and not on my feeling that an impenetrable wall had arisen between me and anyone who had not lost a child. If an opportunity to do some work (for example, a short translation or editing job) came up, I would focus on that one activity, without thinking about whether I would ever be able to return to a regular work schedule.
In this way, I’ve slowly and painfully regained a certain equilibrium, and am now able to handle several hours a day of work, more or less carry out my domestic responsibilities, spend time with my children and Don, and even find some time for myself – to read, or meet with friends. But there is still at least one time every day when it doesn’t feel right to be doing anything. I can’t concentrate on work or on reading, and don’t feel up to talking with anyone. At those times, I feel a certain panic, as if I’m lost in a wilderness somewhere without basic survival tools.
Although I’m very excited about my summer plans, I'm also quite anxious at the prospect of spending more than two months away from my family, in a city (New York) in which I haven’t lived since I was 17, surrounded by people with whom I don’t have a longstanding relationship. My lifestyle will be almost completely different than it is now - I'll be a full-time students as opposed to a working mother. I’m afraid all that sudden change will throw me off, so that I won’t be able to do even what I need to in order to finish this summer, let alone manage the two-plus years of the program.
But I hold on to the reason I’m going to New York. I'm going in order to learn to do what I can with my own experience going through Timmi's illness and death together with my family, to help other families get through that experience whole. I think there's a good chance that this sense of purpose will pull me together and give me the direction and the energy I’ll need to get the most I can out of my studies. And in the long run, I hope that my new career will fill my need to reconstruct, even if imperfectly, the world I lost when Timmi died.
With Timmi gone, my life will never be truly balanced again. But I hope and pray that the journey I’m starting this coming summer will ultimately bring me - and, perhaps, at least some of my family - to a new equilibrium, from which I’ll be able to help other families find their own balance.
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