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.
Thursday, June 02, 2005
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.
Saturday, March 26, 2005
Helplessness, Faith and Courage
March 12, 2000
A great deal has happened since I sent my last update, most of it not so great.
Timmi was hospitalized last Shabbat morning with a fever, and has been in the hospital since, except for "leave" this Shabbat (she went back immediately Motzei Shabbat*). She has, it turns out, quite a serious bacterial infection in her blood. In addition, for quite some time she has been having stomach pain, nausea or vomiting when she eats or drinks; for the past week or more she has been able to keep down only very small amounts of neutral food, such as bread. A gastroentoscopy that was performed on Thursday showed some kind of inflammation in two places in her stomach, and biopsies were taken to determine if they are bacterial, viral or possibly GVH-related. And speaking of GVH, it is unclear whether she has it any more, as the rash she developed after taking the interferon has almost disappeared. This means that the interferon treatment was a failure; the next step, when she is well enough, will be to start giving her new T-cells from Ashira in an attempt to reignite the GVH. So the inflammation that we wanted has gone away, and now she is suffering from two unwanted inflammations.
Counterintuitively, Timmi's mood took a serious turn for the worse when she came home for Shabbat, and she spent most of Shabbat angry or depressed. It is very hard for her to come back and see life going on more or less normally (while life in our house is certainly not normal right now, the other children do have lives that they lead), when it is so hard for her to participate.
Paradoxically, though, during the past two weeks I personally have been coping quite a bit better than had been the case before that. I have found that, at least in our present situation, the most helpful thing that I can do for myself, as well as for Timmi, is to recognize my own helplessness in the face of these terrible things, and accept the limitations on my ability to change much. What I can do, right now, is be with Timmi, let her know I'm there and give her the message that I know where she is, and love her. I do this most effectively, it turns out, when I recognize that that is really all I can do at that particular moment. It is not easy, as a parent, to recognize and accept these limits, especially when it comes to Timmi's emotional state. Rejecting the limits, though, not only makes me feel guilty for not doing the "more" or the "better" that "must" be out there to do, but it also makes me less helpful to Timmi. So I have been working very hard on this, as difficult as it is.
Shavua Tov* to all.
Love,
Sara
*Saturday night.
**A good week.
March 23, 2005
I just got back from the public reading in synagogue of Megillat Esther (the Book of Esther) that is a central part of Jews’ observance of Purim (see my last post). In many respects, the Purim story is one of the interrelationship between the limitations that we humans face in determining our own fate, on the one hand, and faith and courage – the two means that we do have in our struggle against the despair that can result from that helplessness, on the other.
In the Purim story, the Jews of the ancient Persian Empire are faced with annihilation at the hands of Haman, King Ahasuerus’s favored adviser, who formulates his genocidal plan in response to the anger and hatred that he feels toward one Jew – Mordechai, who refuses to bow down to him. The king, an absolute monarch who makes decisions according to how his fancy strikes him at any particular moment, sees nothing amiss or even unusual, it seems, in ordering the destruction of an entire people on the basis of one man’s counsel (with a large bribe thrown into the bargain). Haman decides which day the massacre is to take place by casting lots – Purim – and the lot falls on the 14th day of Adar, the last month in the Jewish calendar.
In such an arbitrary world, it’s easy to give in to despair. And indeed, that is just what the Jews do upon hearing of the king’s decree – mourn their fate in advance, donning sackcloth and sitting in ashes. This is Mordechai’s first response as well – he even sits in mourning at the palace gate, where sackcloth and ashes are forbidden. But as a man of faith, Mordechai does not allow despair to rule him. He sends a message to his cousin and adopted daughter, Ahasuerus's wife Queen Esther, telling her of Haman’s plan and Ahasuerus’s acquiescence, and asks that she intervene with the king. At first, Esther too is struck by a sense of futility; by coming to the king uninvited, she runs the risk of being executed. But she agrees, asking only that the Jews fast for her for three days before she enters the king’s chamber. Thanks to Mordechai’s and Esther’s faith and courage, the story ends happily; Esther’s mission is successful – the Jews are spared, and Haman and his cohorts receive their just punishment.
Sometimes our world seems as if it’s ruled by a king like Ahasuerus, with our fate determined by chance rather than by our own acts. We’d love to think that we have control over our lives – that our behavior will determine the course our lives will take, for good and for bad. And we do have a certain amount of control. “What goes around comes around” is not a completely empty slogan. Like Haman, evil people are sometimes undone by their own character; witness the ultimate fates of Hitler, Stalin, Pol Pot and other monsters like them. But for each such example there is a counter-example of a despot who caused untold harm to great numbers of people, but died peacefully of old age. In our private lives, too, each of us knows people who seem to get what they deserve – and others who definitely do not. Not all stories end like the Purim story, with evil punished and innocence rewarded.
My father once described the arbitrary nature of the world around him, as he saw it, in a poem:
Some angry angel
Bleared by Bach and still unfed
Jumped out of bed
Pulled on a sock and,
Glancing downwards,
Threw a rock
Which hit an earthbound peacock’s head.
The peacock fell.
The peacock’s yell,
Outraged by such treason,
Cried out to know why it
Out of millions
Should be hit
And instantly invented a reason.
How are we to understand the capriciousness of fortune? There are those who insist, as a theological certainly and regardless of a great deal of evidence to the contrary, that the pattern of each person’s life is determined in accordance with the laws of reward and punishment. The reward/punishment may be personal (the person herself deserves it), familial (the person is treated according to her parents’ or ancestors’ good or evil deeds) or national (what befalls a people depends on its members’ national morality). If things seem otherwise, it’s only because we can’t understand God’s plan. The problem with this approach is that it can lead to a smug disregard for the suffering of others who, after all, “get only what’s coming to them.” There are others, like my father, who accept only the evidence of their eyes and see life and destiny as completely arbitrary. This belief, though, can plunge a morally principled person into the depths of despair, as there seems to be no point in even trying to do the right thing.
Rasha v’tov lo (an evil person who prospers) and Tzaddik v’rah lo (a righteous person who suffers) is one of the oldest and most difficult of philosophical and theological questions, and I certainly cannot claim to have resolved it. What I do know is that as a person of faith, I refuse to accept either extreme position. If I believed that Timmi suffered and died because of her own or others’ transgressions, I would not be able to serve such a vengeful God. My faith would not survive such knowledge. But neither can I see her suffering and death as arbitrary and meaningless; this too would be devastating to me. And I’ve experienced too much of God’s goodness to believe that the universe just happened – as some kind of cosmic mistake – or that He created it and then left us entirely on our own, to fend for ourselves.
So I return to my question. In a world in which terrible things sometimes befall the innocent, and not all stories end like Esther’s, Mordechai’s and Haman’s, how do we face our vulnerability without either denying reality or letting it overwhelm us with despair? I believe that the answer comes back to faith and courage. Mordechai and Esther had faith in the possibility that their lives – and those of their people – were subject to a force beyond random events, to more than the momentary whims of a king. They had the courage to risk their lives on the basis of this faith – Mordechai as he continued to defy Haman and sit at the palace gates, and Esther as she entered the king’s inner chamber without having been summoned.
Esther and Mordechai succeeded in reversing the tide of capricious fortune that threatened to engulf the Jewish people of their time. But I believe that those two heroes’ faith and courage may serve as an example to us even when our story doesn’t end happily. We can call on our courage to help us face the frightening reality that we live in a world in which innocents can and do suffer, and in which even children can and do die. And faith can help us go on living, even in full awareness of our helplessness, without becoming either despondent or cynical. If life is to have meaning, I believe, we must reject both attitudes. Despondency may lead a person to feel – and act – as if there’s no point in doing anything, because all may be undone in a chance moment. Cynicism may cause a person to feel, and act, as if there’s no point in trying to live morally, because in a world without reward or punishment we might as well do whatever we please – even if it causes arbitrary and undeserved harm to others, thus perpetuating the cycle.
May all our stories end happily – and at those times when they don’t, may God bless us all with the faith and courage to continue living fearlessly and morally, even as we face the limits of our control over our own destinies.
A great deal has happened since I sent my last update, most of it not so great.
Timmi was hospitalized last Shabbat morning with a fever, and has been in the hospital since, except for "leave" this Shabbat (she went back immediately Motzei Shabbat*). She has, it turns out, quite a serious bacterial infection in her blood. In addition, for quite some time she has been having stomach pain, nausea or vomiting when she eats or drinks; for the past week or more she has been able to keep down only very small amounts of neutral food, such as bread. A gastroentoscopy that was performed on Thursday showed some kind of inflammation in two places in her stomach, and biopsies were taken to determine if they are bacterial, viral or possibly GVH-related. And speaking of GVH, it is unclear whether she has it any more, as the rash she developed after taking the interferon has almost disappeared. This means that the interferon treatment was a failure; the next step, when she is well enough, will be to start giving her new T-cells from Ashira in an attempt to reignite the GVH. So the inflammation that we wanted has gone away, and now she is suffering from two unwanted inflammations.
Counterintuitively, Timmi's mood took a serious turn for the worse when she came home for Shabbat, and she spent most of Shabbat angry or depressed. It is very hard for her to come back and see life going on more or less normally (while life in our house is certainly not normal right now, the other children do have lives that they lead), when it is so hard for her to participate.
Paradoxically, though, during the past two weeks I personally have been coping quite a bit better than had been the case before that. I have found that, at least in our present situation, the most helpful thing that I can do for myself, as well as for Timmi, is to recognize my own helplessness in the face of these terrible things, and accept the limitations on my ability to change much. What I can do, right now, is be with Timmi, let her know I'm there and give her the message that I know where she is, and love her. I do this most effectively, it turns out, when I recognize that that is really all I can do at that particular moment. It is not easy, as a parent, to recognize and accept these limits, especially when it comes to Timmi's emotional state. Rejecting the limits, though, not only makes me feel guilty for not doing the "more" or the "better" that "must" be out there to do, but it also makes me less helpful to Timmi. So I have been working very hard on this, as difficult as it is.
Shavua Tov* to all.
Love,
Sara
*Saturday night.
**A good week.
March 23, 2005
I just got back from the public reading in synagogue of Megillat Esther (the Book of Esther) that is a central part of Jews’ observance of Purim (see my last post). In many respects, the Purim story is one of the interrelationship between the limitations that we humans face in determining our own fate, on the one hand, and faith and courage – the two means that we do have in our struggle against the despair that can result from that helplessness, on the other.
In the Purim story, the Jews of the ancient Persian Empire are faced with annihilation at the hands of Haman, King Ahasuerus’s favored adviser, who formulates his genocidal plan in response to the anger and hatred that he feels toward one Jew – Mordechai, who refuses to bow down to him. The king, an absolute monarch who makes decisions according to how his fancy strikes him at any particular moment, sees nothing amiss or even unusual, it seems, in ordering the destruction of an entire people on the basis of one man’s counsel (with a large bribe thrown into the bargain). Haman decides which day the massacre is to take place by casting lots – Purim – and the lot falls on the 14th day of Adar, the last month in the Jewish calendar.
In such an arbitrary world, it’s easy to give in to despair. And indeed, that is just what the Jews do upon hearing of the king’s decree – mourn their fate in advance, donning sackcloth and sitting in ashes. This is Mordechai’s first response as well – he even sits in mourning at the palace gate, where sackcloth and ashes are forbidden. But as a man of faith, Mordechai does not allow despair to rule him. He sends a message to his cousin and adopted daughter, Ahasuerus's wife Queen Esther, telling her of Haman’s plan and Ahasuerus’s acquiescence, and asks that she intervene with the king. At first, Esther too is struck by a sense of futility; by coming to the king uninvited, she runs the risk of being executed. But she agrees, asking only that the Jews fast for her for three days before she enters the king’s chamber. Thanks to Mordechai’s and Esther’s faith and courage, the story ends happily; Esther’s mission is successful – the Jews are spared, and Haman and his cohorts receive their just punishment.
Sometimes our world seems as if it’s ruled by a king like Ahasuerus, with our fate determined by chance rather than by our own acts. We’d love to think that we have control over our lives – that our behavior will determine the course our lives will take, for good and for bad. And we do have a certain amount of control. “What goes around comes around” is not a completely empty slogan. Like Haman, evil people are sometimes undone by their own character; witness the ultimate fates of Hitler, Stalin, Pol Pot and other monsters like them. But for each such example there is a counter-example of a despot who caused untold harm to great numbers of people, but died peacefully of old age. In our private lives, too, each of us knows people who seem to get what they deserve – and others who definitely do not. Not all stories end like the Purim story, with evil punished and innocence rewarded.
My father once described the arbitrary nature of the world around him, as he saw it, in a poem:
Some angry angel
Bleared by Bach and still unfed
Jumped out of bed
Pulled on a sock and,
Glancing downwards,
Threw a rock
Which hit an earthbound peacock’s head.
The peacock fell.
The peacock’s yell,
Outraged by such treason,
Cried out to know why it
Out of millions
Should be hit
And instantly invented a reason.
How are we to understand the capriciousness of fortune? There are those who insist, as a theological certainly and regardless of a great deal of evidence to the contrary, that the pattern of each person’s life is determined in accordance with the laws of reward and punishment. The reward/punishment may be personal (the person herself deserves it), familial (the person is treated according to her parents’ or ancestors’ good or evil deeds) or national (what befalls a people depends on its members’ national morality). If things seem otherwise, it’s only because we can’t understand God’s plan. The problem with this approach is that it can lead to a smug disregard for the suffering of others who, after all, “get only what’s coming to them.” There are others, like my father, who accept only the evidence of their eyes and see life and destiny as completely arbitrary. This belief, though, can plunge a morally principled person into the depths of despair, as there seems to be no point in even trying to do the right thing.
Rasha v’tov lo (an evil person who prospers) and Tzaddik v’rah lo (a righteous person who suffers) is one of the oldest and most difficult of philosophical and theological questions, and I certainly cannot claim to have resolved it. What I do know is that as a person of faith, I refuse to accept either extreme position. If I believed that Timmi suffered and died because of her own or others’ transgressions, I would not be able to serve such a vengeful God. My faith would not survive such knowledge. But neither can I see her suffering and death as arbitrary and meaningless; this too would be devastating to me. And I’ve experienced too much of God’s goodness to believe that the universe just happened – as some kind of cosmic mistake – or that He created it and then left us entirely on our own, to fend for ourselves.
So I return to my question. In a world in which terrible things sometimes befall the innocent, and not all stories end like Esther’s, Mordechai’s and Haman’s, how do we face our vulnerability without either denying reality or letting it overwhelm us with despair? I believe that the answer comes back to faith and courage. Mordechai and Esther had faith in the possibility that their lives – and those of their people – were subject to a force beyond random events, to more than the momentary whims of a king. They had the courage to risk their lives on the basis of this faith – Mordechai as he continued to defy Haman and sit at the palace gates, and Esther as she entered the king’s inner chamber without having been summoned.
Esther and Mordechai succeeded in reversing the tide of capricious fortune that threatened to engulf the Jewish people of their time. But I believe that those two heroes’ faith and courage may serve as an example to us even when our story doesn’t end happily. We can call on our courage to help us face the frightening reality that we live in a world in which innocents can and do suffer, and in which even children can and do die. And faith can help us go on living, even in full awareness of our helplessness, without becoming either despondent or cynical. If life is to have meaning, I believe, we must reject both attitudes. Despondency may lead a person to feel – and act – as if there’s no point in doing anything, because all may be undone in a chance moment. Cynicism may cause a person to feel, and act, as if there’s no point in trying to live morally, because in a world without reward or punishment we might as well do whatever we please – even if it causes arbitrary and undeserved harm to others, thus perpetuating the cycle.
May all our stories end happily – and at those times when they don’t, may God bless us all with the faith and courage to continue living fearlessly and morally, even as we face the limits of our control over our own destinies.
Wednesday, March 16, 2005
Everything and Its Opposite
February 28, 2000
Timmi had a difficult week last week, with the side effects of the medicine (interferon) she was taking to try to induce GVH making her feel physically weak, with frequent fever. She was also quite discouraged much of the time. On Thursday she had a scan, the results of which were inconclusive - it showed areas where there was "something" but it was difficult to tell if what showed up on the scan were tumors, results of her osteoporosis or the beginnings of GVH. My gut feeling is that it is all of the above. At any rate, we were encouraged by the possibility that the GVH was finally starting to appear, and Timmi's mood improved a bit with that news. It also seems that her pain level has been reduced, which could be attributed to the increased effectiveness of her anti-pain medication, but also might be seen as resulting from the GVH (i.e., her new immune system's functioning) attacking and shrinking the tumors that were causing the pain.
Today, she woke up with an intense rash all over her body. This, finally, is a clear sign of serious GVH, so it seems the interferon has indeed been working. The downside is that the rash is very itchy; we hope to be able to control the itching with a hydrocortisone cream, but if the GVH gets too intense she will have to be hospitalized in order to receive steroids intravenously. So, as we expected, the good news of the start of GVH comes with a great deal of anxiety over what and how much Timmi will suffer from the "cure" for her cancer, and how she will deal with the constant discomfort.
My own emotional state has been quite variable, with days that I cope and days that I feel as if I have lost the ability to enjoy myself, and days when just coping seems a Herculean task. I am very grateful for Don, who is in a somewhat better place than I am right now, and for the love I feel from my friends. But sometimes I get overwhelmed. Today, though, I'm functioning quite well, so I'm grateful for that and hope it will last. Also, Purim is coming, which means the best days of the year for me - Purim Spiel rehearsals!
Shavua Tov to all of you.
Love,
Sara
March 16, 2005
This past Shabbat was the first day of Adar II,* the month in which we Jews celebrate Purim. This holiday commemorates the deliverance of the Jews of the Persian empire from the genocidal destruction planned by the Persian king’s evil adviser, Haman, through the faith and courage of Queen Esther and her brother Mordechai. The story is told in the Book of Esther, which describes how Jews have ever since celebrated Purim, “the days on which the Jews were delivered from their enemies,” and Adar as “the month that was turned for them from sorrow into gladness and from mourning into a holiday.”
We celebrate Purim with a festive meal, gifts of food, charity to the poor, and generally by having a rowdy good time. But what most distinguishes Purim from other holidays, whether Jewish or other, is its focus on turning things around. Many Israeli schools, for example, celebrate the beginning of Adar as “Opposite Day” – in commemoration of the reversal of the Jews’ fortune, roles are reversed, with students teaching and teachers acting like kids. In just about every school in the country, children and teachers alike dress up in costumes – another way of being what you aren’t and, in a sense, of reversing reality. (I recently learned that in Abu Ghosh, an Arab town next to Jerusalem, even the Muslims and the Christians dress up and fool around!) One of my favorite parts of Purim is that every year I participate in our synagogue’s “Purim Spiel,” a traditional comic play or show in which we make fun of anything and everything, especially ourselves.
One of Purim’s profound meanings, for me, is its recognition that everything in this world contains the seed of its opposite. Just as the Persian Empire’s Jews’ disaster contained the germs of their deliverance – for in the end it was Haman’s own evil character that proved to be his undoing – so every situation holds within itself the reverse possibility. Even life, by definition, contains the certainty of eventual death; the main thing all living creatures have in common is that they are bound to die. Similarly, each human being is made up of many conflicting selves, and Purim is a time to explore these selves and bring them out into the light, if only for one day. (I, for example, love getting in touch with my “inner vamp” as part of my Purim performance, even though the other days of the year I dress and behave with the modesty that the Jewish religion requires.)
But this also means that good times, good situations and even good people may reverse course, and their darker aspects may emerge and even dominate. For me, the most striking occurence illustrating how great good and great evil may dwell side by side in the same person took place about ten years ago, on Purim. A doctor named Baruch Goldstein, who was known for his kindness, charity, and extraordinary efforts to help other Jews, took his military weapon, entered a mosque in the middle of prayers, and massacred 29 worshippers. Since then, Purim has had a bittersweet flavor for me.
In some ways, Timmi contained more contradictions than most. When she was a small girl, we used to call her “the little girl with the little curl right in the middle of her forehead” (because, of course, besides having lovely curly hair, “when she was good she was very, very good, but when she was bad she was horrid”). It was very easy for her to move from a bright, happy mood to anger or sadness. (Luckily for us, most of the time she sparkled with fun.) After she became ill, this natural tendency, which was harmless enough when she was small, intensified. At times, she would fall into black despair, and lash out at those with whom she shared the deepest love.
Timmi had always treasured her role as big sister (she was our fourth out of seven children), and enjoyed teaching her younger sisters and brother games, making things with them, and generally helping them in all kinds of ways. But during her illness there were many times when her pain or despair overcame her, and she directed her bitterness at Elaine, Aimee and Danny. This was heartbreaking for me and Don – there were times when Timmi seemed almost unrecognizable as herself. (I’ve been told that cancer, and certain treatments for cancer, sometimes do this to people.) These outbursts had a deep and lasting effect on the younger children, and many times Don and I had to explain to them that although it sometimes seemed as if their sister had turned into a stranger, the true Timmi was still there, still loved them, and would come back out again once her pain, or desperate mood, had passed.
Even Timmi’s physical being expressed these contradictions. She was an extremely active child, graceful and strong, and spent much of her time running, skipping, and dancing. And yet, from the age of four or so, that healthy, beautiful body contained hundreds, then thousands, then millions of malignant cells that took eight years to make themselves known, ultimately filling her bones and replacing her life-giving blood cells with the seeds of an early death.
But just as life always contains the germ of death, so death can sometimes give deeper meaning to life. Timmi’s death is without a doubt the worst thing that has ever happened to me, to Don and to our children. But even the intense suffering that we went through – and continue to experience at times – has created and nurtured aspects of ourselves that might otherwise never have been expressed as strongly or in the same way. Empathy has always been one of our family’s highest values, but now we possess experience and language that enable us to listen deeply to others’ suffering, to help them feel that they’re not alone, even sometimes to lighten their burden. For example, one of Aimee’s friends’ mother has been stricken with breast cancer, and Aimee has been able to listen and speak to her friend with a maturity far beyond her fifteen years. I am changing my career in the hope of helping strangers in that way. And I think that much of my other children’s passion for social activism also stems in part from the intense sensitivity to other people’s suffering that grew in them in response to Timmi’s illness and death.
So as Purim approaches, my awareness grows of the deep complexity of our lives. This world contains everything and its opposite, and each of its aspects bears within it a multitude of possibilities – as do we. And, as human beings created in God's image, we have the capacity to choose which parts of ourselves to develop in response to the extreme suffering – our own and other people’s – that is sometimes a tragic part of life. I pray us that God will grant us all the strength to draw on our own sorrow to ease the pain of others, and to learn from our own mourning to help other mourners find within themselves that very same strength.
*The Jewish calendar, which is strictly lunar, contains a second month of Adar every few years, to keep it in synch with the solar calendar.
Timmi had a difficult week last week, with the side effects of the medicine (interferon) she was taking to try to induce GVH making her feel physically weak, with frequent fever. She was also quite discouraged much of the time. On Thursday she had a scan, the results of which were inconclusive - it showed areas where there was "something" but it was difficult to tell if what showed up on the scan were tumors, results of her osteoporosis or the beginnings of GVH. My gut feeling is that it is all of the above. At any rate, we were encouraged by the possibility that the GVH was finally starting to appear, and Timmi's mood improved a bit with that news. It also seems that her pain level has been reduced, which could be attributed to the increased effectiveness of her anti-pain medication, but also might be seen as resulting from the GVH (i.e., her new immune system's functioning) attacking and shrinking the tumors that were causing the pain.
Today, she woke up with an intense rash all over her body. This, finally, is a clear sign of serious GVH, so it seems the interferon has indeed been working. The downside is that the rash is very itchy; we hope to be able to control the itching with a hydrocortisone cream, but if the GVH gets too intense she will have to be hospitalized in order to receive steroids intravenously. So, as we expected, the good news of the start of GVH comes with a great deal of anxiety over what and how much Timmi will suffer from the "cure" for her cancer, and how she will deal with the constant discomfort.
My own emotional state has been quite variable, with days that I cope and days that I feel as if I have lost the ability to enjoy myself, and days when just coping seems a Herculean task. I am very grateful for Don, who is in a somewhat better place than I am right now, and for the love I feel from my friends. But sometimes I get overwhelmed. Today, though, I'm functioning quite well, so I'm grateful for that and hope it will last. Also, Purim is coming, which means the best days of the year for me - Purim Spiel rehearsals!
Shavua Tov to all of you.
Love,
Sara
March 16, 2005
This past Shabbat was the first day of Adar II,* the month in which we Jews celebrate Purim. This holiday commemorates the deliverance of the Jews of the Persian empire from the genocidal destruction planned by the Persian king’s evil adviser, Haman, through the faith and courage of Queen Esther and her brother Mordechai. The story is told in the Book of Esther, which describes how Jews have ever since celebrated Purim, “the days on which the Jews were delivered from their enemies,” and Adar as “the month that was turned for them from sorrow into gladness and from mourning into a holiday.”
We celebrate Purim with a festive meal, gifts of food, charity to the poor, and generally by having a rowdy good time. But what most distinguishes Purim from other holidays, whether Jewish or other, is its focus on turning things around. Many Israeli schools, for example, celebrate the beginning of Adar as “Opposite Day” – in commemoration of the reversal of the Jews’ fortune, roles are reversed, with students teaching and teachers acting like kids. In just about every school in the country, children and teachers alike dress up in costumes – another way of being what you aren’t and, in a sense, of reversing reality. (I recently learned that in Abu Ghosh, an Arab town next to Jerusalem, even the Muslims and the Christians dress up and fool around!) One of my favorite parts of Purim is that every year I participate in our synagogue’s “Purim Spiel,” a traditional comic play or show in which we make fun of anything and everything, especially ourselves.
One of Purim’s profound meanings, for me, is its recognition that everything in this world contains the seed of its opposite. Just as the Persian Empire’s Jews’ disaster contained the germs of their deliverance – for in the end it was Haman’s own evil character that proved to be his undoing – so every situation holds within itself the reverse possibility. Even life, by definition, contains the certainty of eventual death; the main thing all living creatures have in common is that they are bound to die. Similarly, each human being is made up of many conflicting selves, and Purim is a time to explore these selves and bring them out into the light, if only for one day. (I, for example, love getting in touch with my “inner vamp” as part of my Purim performance, even though the other days of the year I dress and behave with the modesty that the Jewish religion requires.)
But this also means that good times, good situations and even good people may reverse course, and their darker aspects may emerge and even dominate. For me, the most striking occurence illustrating how great good and great evil may dwell side by side in the same person took place about ten years ago, on Purim. A doctor named Baruch Goldstein, who was known for his kindness, charity, and extraordinary efforts to help other Jews, took his military weapon, entered a mosque in the middle of prayers, and massacred 29 worshippers. Since then, Purim has had a bittersweet flavor for me.
In some ways, Timmi contained more contradictions than most. When she was a small girl, we used to call her “the little girl with the little curl right in the middle of her forehead” (because, of course, besides having lovely curly hair, “when she was good she was very, very good, but when she was bad she was horrid”). It was very easy for her to move from a bright, happy mood to anger or sadness. (Luckily for us, most of the time she sparkled with fun.) After she became ill, this natural tendency, which was harmless enough when she was small, intensified. At times, she would fall into black despair, and lash out at those with whom she shared the deepest love.
Timmi had always treasured her role as big sister (she was our fourth out of seven children), and enjoyed teaching her younger sisters and brother games, making things with them, and generally helping them in all kinds of ways. But during her illness there were many times when her pain or despair overcame her, and she directed her bitterness at Elaine, Aimee and Danny. This was heartbreaking for me and Don – there were times when Timmi seemed almost unrecognizable as herself. (I’ve been told that cancer, and certain treatments for cancer, sometimes do this to people.) These outbursts had a deep and lasting effect on the younger children, and many times Don and I had to explain to them that although it sometimes seemed as if their sister had turned into a stranger, the true Timmi was still there, still loved them, and would come back out again once her pain, or desperate mood, had passed.
Even Timmi’s physical being expressed these contradictions. She was an extremely active child, graceful and strong, and spent much of her time running, skipping, and dancing. And yet, from the age of four or so, that healthy, beautiful body contained hundreds, then thousands, then millions of malignant cells that took eight years to make themselves known, ultimately filling her bones and replacing her life-giving blood cells with the seeds of an early death.
But just as life always contains the germ of death, so death can sometimes give deeper meaning to life. Timmi’s death is without a doubt the worst thing that has ever happened to me, to Don and to our children. But even the intense suffering that we went through – and continue to experience at times – has created and nurtured aspects of ourselves that might otherwise never have been expressed as strongly or in the same way. Empathy has always been one of our family’s highest values, but now we possess experience and language that enable us to listen deeply to others’ suffering, to help them feel that they’re not alone, even sometimes to lighten their burden. For example, one of Aimee’s friends’ mother has been stricken with breast cancer, and Aimee has been able to listen and speak to her friend with a maturity far beyond her fifteen years. I am changing my career in the hope of helping strangers in that way. And I think that much of my other children’s passion for social activism also stems in part from the intense sensitivity to other people’s suffering that grew in them in response to Timmi’s illness and death.
So as Purim approaches, my awareness grows of the deep complexity of our lives. This world contains everything and its opposite, and each of its aspects bears within it a multitude of possibilities – as do we. And, as human beings created in God's image, we have the capacity to choose which parts of ourselves to develop in response to the extreme suffering – our own and other people’s – that is sometimes a tragic part of life. I pray us that God will grant us all the strength to draw on our own sorrow to ease the pain of others, and to learn from our own mourning to help other mourners find within themselves that very same strength.
*The Jewish calendar, which is strictly lunar, contains a second month of Adar every few years, to keep it in synch with the solar calendar.
Monday, March 07, 2005
The Bare Necessities: Work
February 17, 2000
During the last week, no signs of GVH appeared, and Timmi's pains got worse. Next week she will have a scan to see if the pains she is having are in fact from tumors, but because they are strongest in the places where she has historically had the largest tumors, we are assuming that that's what they are. Therefore, she has started injecting herself every day with interferon, which we hope will stimulate a GVH and attendant GVL (graft versus host and graft versus leukemia) effect. The results of a genetic test have indicated that her present immune system is indeed grafted from Shari’s, and that improves the possibility that the interferon will work. We certainly hope so. If there is no GVH in the next two weeks, she will start getting extra T-cells from Shari in a further attempt to induce the syndrome.
Timmi's mood markedly improved this past week, as well as my own ability to function. A psychologist once told me that in these situations people sometimes need "collapse days". I had a few of those over the last couple of weeks, but now feel like I'm coping again. My life is now slow and stressed - a few years ago, I wouldn't have believed that such a thing exists. I hope to be getting out for more professional work in the near future, and am again making sure to get enough exercise. Those are the things that most help me, so I hope to stay in the coping mode for a while at least. (I also never dreamed that I would ever see work as a kind of vacation!)
Shabbat Shalom to all.
Love,
Sara
March 3, 2005
Several days ago I took an exciting but scary decision. I decided definitely to go to New York this summer to start the MSW program to which I’ve been accepted, even though I still don’t know how I’ll finance the program past the first year. (I wrote about my hope to attend this program in “Plans,” October 2004, and “Waiting,” January 2005.) I made my decision thanks to the feedback and advice of literally everyone I spoke to about my dilemma whether to start the program without knowing I could finish it. Every single person around me – my friends, Don, my children – has told me that I should just go for it, and that the momentum of starting would carry me through. As Shari put it, if this is what I’m meant to do, God will make sure I manage to do it, one way or another. Although it’s hard to escape my fear that things won’t happen the way I hope they will, the chance of finally working at a profession with which I identify completely is too important to me to give up.
Since the age of three and a half, when I started nursery school, I was always part of a framework of either study (which is, after all, our work when we’re young) or a profession, or both. Having children didn’t change that. I had Lisa in the middle of my second year of law school, and was completely determined that parenting wouldn't come at the expense of work, and vice versa. I would do my homework and study for tests while nursing Lisa. Once, when Don was unavailable and we had no other childcare arrangement, I took her with me to class. I sat her on my desk, next to the door in case she needed to be taken out, and gave her a teddy bear to play with. (About half the students who came in past us said something like, “I wish I also had a teddy bear to play with!") This mix of mothering and studying led to some absurd and comic scenes: my six-hour Business Associations exam was the first time I’d gone for more than three hours without nursing Lisa, so there I sat, writing frantically about partnerships and corporations, while my body kept insisting in no uncertain terms that it was time to feed my baby. I left the exam soaked from my neck to my knees!
I went on living an intensely high-energy life, combining motherhood with work (I include study in my definition of work) outside my home; I gave birth to Sheila a week after finishing law school, and to Shari right after finishing my clerkship on the federal court of appeals. When we came to Israel a month later, I immediately entered an ”Ulpan” (a Hebrew language immersion program), after which I enrolled in a Masters program in Jewish law at Hebrew University; Timmi was born when I was one year into the Masters program. The next year, I began work as an intern at a law firm, and Elaine was born just as I completed the mandatory year and a half of internship. I started my career as a licensed attorney with five children up to the age of nine! After Aimee and then Danny were born, I moved from my high-pressure job at a private commercial law firm to a less stressful job with the government, but due to my relatively high position (as deputy legal adviser at a government ministry) I still worked full-time-plus.
All along, Don and I shared our domestic duties according to practical considerations – whoever was free did whatever was needed at the moment. And when Timmi first became ill, I continued working, because it was natural for Don and me to split between us what needed to be done to take care of her and of the other children.
Timmi's relapse was diagnosed shortly after I’d left the legal profession to study mediation. Under those circumstances, I couldn’t get a new regular job. I wanted to be more available for Timmi and my other children this time around, as a relapse is much scarier than a first-time cancer. Also, it was clear that even if I wanted a job outside my home, no one would hire the mother of a child with such a demanding illness. So I took occasional free-lance mediation work, mostly for divorcing couples. For the first time since I was three and a half, I found myself without a regular framework for work or study outside my home. It was a strange feeling, but I was so busy with Timmi and the other kids that I didn’t really have time to notice it much.
When Timmi died, the vacuum she left behind was harder to deal with than the frantic activity of even the most pressured periods in my life before then. All the energy that I managed to find within myself, first when I was parenting seven children while working at a demanding profession, then as a mother dealing with Timmi’s illness and its fallout for the rest of the family – all that energy just dried up. Almost everything I needed to do seemed totally overwhelming; at the same time, I didn’t know what to do with myself during the long, empty hours of the day. It was almost two years before I was able to return to a regular job, and a part-time one at that. (To this day, I haven't felt able to work a full day, and often when I return from work I don't seem to have the strength to do what needs to be done at home.)
Almost miraculously, though, whenever I've been involved in a mediation, I've discovered that elusive energy within myself. I find it fascinating and exciting to be allowed into the emotional lives of my clients and to help them solve their conflicts. Even before I was able to return to work at a regular job, no matter how hard things were at home (both during Timmi’s second illness and after her death) I was always able to leave my troubles outside the door and concetrate on the people sitting in the mediation room with me, and on my work with them. For the first time in my professional life, I was totally absorbed in work about which I felt passionate, and that passion energized me even when I had the strength for little other than what I barely needed to do to keep my family going.
It was a small and simple step from mediating divorces to the desire to work with people to help keep their families whole. And so I began dreaming of retraining as a social worker and becoming a family therapist, finally applying to the MSW program that I'll start, God willing, this coming June. But the program I’m entering is very demanding. It will mean being away from my family for three summers in a row, each time squeezing a full semester’s course load into six weeks or so, with all of a semester’s homework to do and papers to write. It worries me - what if, however much I want to do this, I really don't have the energy to handle such an intensive schedule?
But I know what Timmi would have said. She would have told me to take the risk and go for it, just as she insisted on pushing herself to her own limits despite her illness. She would have reminded me that perhaps the only way to find some meaning in what we all went through together is for each of us to use what our experience taught us to try and ease other people's suffering, where we can. Elaine does this by working with disadvantaged Jewish and Arab children, and by helping Israeli and Palestinian young women to work together toward a vision of peaceful coexistence. Lisa does this through her work at the Rape Crisis Center. Aimee listens empathetically to her friends whose families are in crisis, and is sometimes even able to help them through, one day at a time. Shari and Sheila hope to make the world a better place through their studies and, ultimately, their work – Shari in film, and Sheila in Middle Eastern studies and communications. Even Danny contributed to a recent all-nighter at his school by giving a Reiki energy healing workshop to the other eighth-graders.
In many ways, our work – whether as students, professionals, or parents – gives our lives meaning. And the work that I need to do, I believe ever more strongly as time passes, is to transform my years as the mother of a family in crisis into something that will enable me to help other families in a similar situation. My plan to study may be scary, but I’ve been through scarier things. I may feel unequal to the demands of such a concentrated program, but I’ve done more intensive things. If this is what I am meant to be doing – and I truly believe it is – then I simply need to start doing it. I can only trust that God will provide me with the strength I need to make it work.
During the last week, no signs of GVH appeared, and Timmi's pains got worse. Next week she will have a scan to see if the pains she is having are in fact from tumors, but because they are strongest in the places where she has historically had the largest tumors, we are assuming that that's what they are. Therefore, she has started injecting herself every day with interferon, which we hope will stimulate a GVH and attendant GVL (graft versus host and graft versus leukemia) effect. The results of a genetic test have indicated that her present immune system is indeed grafted from Shari’s, and that improves the possibility that the interferon will work. We certainly hope so. If there is no GVH in the next two weeks, she will start getting extra T-cells from Shari in a further attempt to induce the syndrome.
Timmi's mood markedly improved this past week, as well as my own ability to function. A psychologist once told me that in these situations people sometimes need "collapse days". I had a few of those over the last couple of weeks, but now feel like I'm coping again. My life is now slow and stressed - a few years ago, I wouldn't have believed that such a thing exists. I hope to be getting out for more professional work in the near future, and am again making sure to get enough exercise. Those are the things that most help me, so I hope to stay in the coping mode for a while at least. (I also never dreamed that I would ever see work as a kind of vacation!)
Shabbat Shalom to all.
Love,
Sara
March 3, 2005
Several days ago I took an exciting but scary decision. I decided definitely to go to New York this summer to start the MSW program to which I’ve been accepted, even though I still don’t know how I’ll finance the program past the first year. (I wrote about my hope to attend this program in “Plans,” October 2004, and “Waiting,” January 2005.) I made my decision thanks to the feedback and advice of literally everyone I spoke to about my dilemma whether to start the program without knowing I could finish it. Every single person around me – my friends, Don, my children – has told me that I should just go for it, and that the momentum of starting would carry me through. As Shari put it, if this is what I’m meant to do, God will make sure I manage to do it, one way or another. Although it’s hard to escape my fear that things won’t happen the way I hope they will, the chance of finally working at a profession with which I identify completely is too important to me to give up.
Since the age of three and a half, when I started nursery school, I was always part of a framework of either study (which is, after all, our work when we’re young) or a profession, or both. Having children didn’t change that. I had Lisa in the middle of my second year of law school, and was completely determined that parenting wouldn't come at the expense of work, and vice versa. I would do my homework and study for tests while nursing Lisa. Once, when Don was unavailable and we had no other childcare arrangement, I took her with me to class. I sat her on my desk, next to the door in case she needed to be taken out, and gave her a teddy bear to play with. (About half the students who came in past us said something like, “I wish I also had a teddy bear to play with!") This mix of mothering and studying led to some absurd and comic scenes: my six-hour Business Associations exam was the first time I’d gone for more than three hours without nursing Lisa, so there I sat, writing frantically about partnerships and corporations, while my body kept insisting in no uncertain terms that it was time to feed my baby. I left the exam soaked from my neck to my knees!
I went on living an intensely high-energy life, combining motherhood with work (I include study in my definition of work) outside my home; I gave birth to Sheila a week after finishing law school, and to Shari right after finishing my clerkship on the federal court of appeals. When we came to Israel a month later, I immediately entered an ”Ulpan” (a Hebrew language immersion program), after which I enrolled in a Masters program in Jewish law at Hebrew University; Timmi was born when I was one year into the Masters program. The next year, I began work as an intern at a law firm, and Elaine was born just as I completed the mandatory year and a half of internship. I started my career as a licensed attorney with five children up to the age of nine! After Aimee and then Danny were born, I moved from my high-pressure job at a private commercial law firm to a less stressful job with the government, but due to my relatively high position (as deputy legal adviser at a government ministry) I still worked full-time-plus.
All along, Don and I shared our domestic duties according to practical considerations – whoever was free did whatever was needed at the moment. And when Timmi first became ill, I continued working, because it was natural for Don and me to split between us what needed to be done to take care of her and of the other children.
Timmi's relapse was diagnosed shortly after I’d left the legal profession to study mediation. Under those circumstances, I couldn’t get a new regular job. I wanted to be more available for Timmi and my other children this time around, as a relapse is much scarier than a first-time cancer. Also, it was clear that even if I wanted a job outside my home, no one would hire the mother of a child with such a demanding illness. So I took occasional free-lance mediation work, mostly for divorcing couples. For the first time since I was three and a half, I found myself without a regular framework for work or study outside my home. It was a strange feeling, but I was so busy with Timmi and the other kids that I didn’t really have time to notice it much.
When Timmi died, the vacuum she left behind was harder to deal with than the frantic activity of even the most pressured periods in my life before then. All the energy that I managed to find within myself, first when I was parenting seven children while working at a demanding profession, then as a mother dealing with Timmi’s illness and its fallout for the rest of the family – all that energy just dried up. Almost everything I needed to do seemed totally overwhelming; at the same time, I didn’t know what to do with myself during the long, empty hours of the day. It was almost two years before I was able to return to a regular job, and a part-time one at that. (To this day, I haven't felt able to work a full day, and often when I return from work I don't seem to have the strength to do what needs to be done at home.)
Almost miraculously, though, whenever I've been involved in a mediation, I've discovered that elusive energy within myself. I find it fascinating and exciting to be allowed into the emotional lives of my clients and to help them solve their conflicts. Even before I was able to return to work at a regular job, no matter how hard things were at home (both during Timmi’s second illness and after her death) I was always able to leave my troubles outside the door and concetrate on the people sitting in the mediation room with me, and on my work with them. For the first time in my professional life, I was totally absorbed in work about which I felt passionate, and that passion energized me even when I had the strength for little other than what I barely needed to do to keep my family going.
It was a small and simple step from mediating divorces to the desire to work with people to help keep their families whole. And so I began dreaming of retraining as a social worker and becoming a family therapist, finally applying to the MSW program that I'll start, God willing, this coming June. But the program I’m entering is very demanding. It will mean being away from my family for three summers in a row, each time squeezing a full semester’s course load into six weeks or so, with all of a semester’s homework to do and papers to write. It worries me - what if, however much I want to do this, I really don't have the energy to handle such an intensive schedule?
But I know what Timmi would have said. She would have told me to take the risk and go for it, just as she insisted on pushing herself to her own limits despite her illness. She would have reminded me that perhaps the only way to find some meaning in what we all went through together is for each of us to use what our experience taught us to try and ease other people's suffering, where we can. Elaine does this by working with disadvantaged Jewish and Arab children, and by helping Israeli and Palestinian young women to work together toward a vision of peaceful coexistence. Lisa does this through her work at the Rape Crisis Center. Aimee listens empathetically to her friends whose families are in crisis, and is sometimes even able to help them through, one day at a time. Shari and Sheila hope to make the world a better place through their studies and, ultimately, their work – Shari in film, and Sheila in Middle Eastern studies and communications. Even Danny contributed to a recent all-nighter at his school by giving a Reiki energy healing workshop to the other eighth-graders.
In many ways, our work – whether as students, professionals, or parents – gives our lives meaning. And the work that I need to do, I believe ever more strongly as time passes, is to transform my years as the mother of a family in crisis into something that will enable me to help other families in a similar situation. My plan to study may be scary, but I’ve been through scarier things. I may feel unequal to the demands of such a concentrated program, but I’ve done more intensive things. If this is what I am meant to be doing – and I truly believe it is – then I simply need to start doing it. I can only trust that God will provide me with the strength I need to make it work.
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