Saturday, December 31, 2005
Timmi's condition unfortunately worsened over the past week. On Sunday when I was there she was close enough to consciousness to nod/shake her head three times in answer to my questions. She immediately went back to hyperventilating, however, and so the staff increased her sedation somewhat.
On Monday morning, her lungs looked worse in the x-ray, seeming to indicate respiratory distress. Because she seemed to be struggling so much with the various kinds of light anesthesia that had been tried, and because there was no question of taking the tubes out with her lungs in worse condition, she was put into deep sedation with morphine. Then, later that day, the stuff hit the fan and she went into septic shock. Her body temperature, pulse and blood pressure all declined rapidly, and she was returned to fully machine-assisted respiration, sedated yet more deeply and again given a drip of a medicine to stabilize her blood pressure. In addition, she was started again on a wide range of antibiotics to combat the sepsis. Her condition was defined as somewhere between serious and critical.
Tuesday and Wednesday she was stable, with no improvement and no deterioration. Today (Thursday) there was a slight improvement, with her x-ray looking a little bit better, and with a lower dose of the blood pressure medicine. In addition, some of her breathing is again spontaneous, although that may be because she is breathing faster than the machine's pace. Still, even a small improvement is movement in the right direction.
We sure need a lot of patience. Thank you all for your prayers and love.
Shabbat Shalom to all, and may this Chanukah bring all of us a much-needed measure of light.
December 28, 2000
There is no change in Timmi's condition, nor has there been for a long time. Her lungs are not improving.
At this point it seems that what may be done for her, has already been done.
At this point, what happens is up to God.
Shabbat Shalom to all.
December 31, 2005: Seventh Night of Chanukah
Chanukah is called the “Festival of Lights.” The story of its miracle is well-known: More than 2,000 years ago, the Jews returned to their Temple, which the soldiers of Antioch’s Hellenistic empire had defiled during their war with the tiny Jewish nation’s freedom fighters. Seeking to relight the Menorah,* the priests found a small quantity of oil - enough to last only one day. But seven days would be needed to purify the additional oil that would keep the flame burning. Nevertheless, the priests lit the Menorah as soon as they found the oil. Perhaps in response to this act of deep faith, God caused that small jar of oil to burn miraculously for eight days, so that the Menorah’s perpetual flame did not go out again until the Romans destroyed the Temple two centuries later.
The Torah teaches us that light was God’s first creation. And light is indeed one of our universe's main foundations. The speed of light defines the relationship between the building blocks of the physical world, matter and energy. It is the sun’s light that makes life on Earth possible. And when we look up into the heavens, we see the billions and billions of stars that fill the universe, whose light reaches us over unimaginable stretches of time and space, and whose distance from our own world we measure in light-years.
Light also figures large in the language we use to speak of the spiritual realm. Jewish mystics, for example, have described the physical world as hiding “sparks” that broke away from the Divine unity during that first act of Creation. These sparks are now scattered throughout the material universe, but long to return to their original unity; a Jew’s purpose in life is to “repair" our shattered reality by restoring the sparks to their Source through mitzvot and Torah study. And people of all religions who have “returned” to life after a few seconds of clinical death universally describe their experience as being drawn toward a great light.
How can I even try to speak of these things - of the relationship between God and our souls, in this world and the next? Human language can never be equal to the task of describing the world of the spirit, and words can give us no more than a hint of the truths they seek to reveal. But as I said in my very first post, words are all I have to help me try to comprehend things that are really beyond human comprehension. And I feel that I must at least do my best to understand; so as poor as my language is, I'll try:
In my own private metaphor, God did not stop at creating the light that marked the beginning of time and space. Every time He fashions a human soul, He endows it with a new and unique spark. This tiny bit of light makes us who we are, and enables us to connect with our Creator during our journey through this life. And when we leave the material world, the sparks of our souls are reunited with the Divine light that emanates from God, expanding and intensifying that light as it beckons the human spirit to itself.
When parents bring a baby into the world, we become God’s partners in His renewed Creation. By giving us a child, He charges us with the duty and the incredible privilege of nurturing this new being and its own matchless spark of light. But we are not given to know when our child’s soul will be called back to its Source. That is entirely up to God. And so giving birth to a child, raising her, and loving her demands of us the same depth of faith that it took to light that day’s worth of oil in the Temple, that first Chanukah so many years ago.
Timmi’s flame lit up our lives not for eight days, eight months, or eight years only. God allowed it to shine on us for eighteen years, three months and two days.
May He grant me and my family the courage and strength to continue our own journey through this life with faith and with love, until our own sparks are joined with Timmi’s in their final reunion with the Divine Light.
*Menorah – the seven-branched candelabra that is meant to burn perpetually in the Temple.
Friday, December 23, 2005
Timmi's condition has not really changed for the past week. She is still under general anesthesia, and still attached to a respirator on breathing support. My understanding is that her X-rays, as well as an ultrasound, have showed no further improvement after the improvement of the first few days, but no deterioration either. She is still attached to a tube that drains the fluids that keep building up in her lungs (or would, were it not for the tube).
Several times the doctors have tried to wake Timmi in order to get her off the oxygen tube. In order to take the tube out ("extubate" her), it is important that she be fully awake and lucid, so that she can cooperate when told to breathe a certain way, cough etc. However, when she is disconnected from the anesthesia and starts to wake up (this can take several hours, by the way), she starts to hyperventilate, either from the panic at awakening to find herself full of tubes, some of which feel like they are choking her, or for some other reason I don't understand. When she hyperventilates, her oxygen level drops sharply, and because she doesn't respond when told (including by me) to try and take slow, deep breaths, she needs to be re-anesthetized in order to stabilize her breathing. So there it is - Catch 22. It would be good if there were a way to calm her without putting her to sleep, but even without narcotics or anesthesia, Timmi has recently been very sleepy, to the point where it has sometimes been impossible to wake her at least for several hours. So any tranquilizer or similar drug she gets puts her to sleep.
I have been there a few hours every day this week, talking to her, singing to her, putting earphones on her head with music, and talking to the medical staff in order to try and get a handle on what's happening. This whole business is, of course, extremely exhausting, although we do have the comfort of knowing that she is not suffering, at least for the moment. On the other hand, we are very worried about what things will be like when she does wake up - it may take a while to extubate even after she is awake, and Timmi's ability to suffer that kind of thing is by now extremely limited. Not to speak of the general condition to which she will "return", and the question, given her extremely damaged immune system, whether and when this will simply happen again.
As for what caused this to happen, all of the tests have so far still come back negative, so the working assumption is still that she has pneumonia from some kind of weird virus. It is now known, from tests, that the respiratory failure was not caused by the leukemia. Cold comfort; most likely the GVH, which apparently is keeping the cancer at bay, also damaged her immune system, leaving her vulnerable to this kind of infection.
Don was home this Shabbat (the plan was for him to sleep at the hospital only if she is truly awake by Shabbat). We requested that the staff call us if they manage to wake her during Shabbat, so that Don would be able to go there then, but they didn't call.
Shavua Tov to all.
December 22, 2005
I’ve always been relatively open; some would say too open. The updates I sent to my community and this blog itself are, I suppose, evidence of this. This is especially so in my relationships with people I care about. If some people are compulsive liars, I guess you could call me a compulsive truth-teller. Doing otherwise makes me feel somehow fake, as if I’m engaging the other person in a relationship under false pretenses. I know this isn’t rational, but it’s me.
When Timmi became ill, many of my beliefs and life-choices were challenged, not least among these my need to be open with those I love.
One day, I was having lunch with Timmi in the garden of a café in our neighborhood. It was the summer before Timmi’s relapse was diagnosed, and she was enjoying the last weeks of her official remission. Suddenly, she asked me, “If you knew I were going to die, would you tell me?”
I immediately went into mother’s alert mode; this was going to be a very crucial conversation. “What would you want me to do?” I asked her. “No, I wouldn’t want you to tell me,” she replied. “It would be too scary.”
Now, if I were going to die anytime soon, I would certainly want to know. I’d want to finish what I could, do my best to secure my children’s future, heal any of my relationships that need mending, and take my leave of those I love in a way that will prepare them, as far as possible, to deal with my death. But I’ve been permitted to live the most important part of my life – I’ve lived in partnership with the man I love, raised children, and had the opportunity to contribute at least part of my share to the world around me. Timmi, on the other hand, had not yet had the chance to do any of these things, and so it was natural that the thought of knowing that her turn would never come was overwhelming.
I later learned just how frightening Timmi found the idea of dying, when we found “Principally Poems,” the collection of her poems (in Hebrew) that she’d edited during the last year of her life and organized according to date. Shortly before her second transplant, she wrote the next-to-last poem in this collection:
You’ve imprisoned me in a cold dark room
And I can neither stand nor sit
And my lying is uneasy
Hard and restless
And I cry –
Let me out
Or let me stand,
Or rest at least, or take away the cold
And if you can’t,
Open up a little crack
So I’ll know –
The world still contains a bit of light.
That day in the Garden Café, I spoke with Timmi about how it would be to hear that she had only a short time left in this world, and how it would be not to be told. I promised to do whatever she decided, although I couldn't promise that she wouldn't be able to know from my face that there was something terribly wrong. As we spoke, Timmi realized very quickly that my promising not to bring her the bad news would be as problematic as my promising to tell her. If I promised to keep from her my own knowledge that she was going to die, she would never be able to feel secure – perhaps the doctors had told Don and me that there was no more hope, and we were keeping it from her? But again, the thought of us coming to her with such news was so very scary.
As we went back and forth on the subject, I was suddenly able to see it in a new light. I pointed out that if I were to “know” that Timmi was going to die, I would be aware of this only because it had become clear that all her medical options had been exhausted, and that she still had cancer. But from the very beginning we had always involved Timmi and kept her informed of all the details of her medical care, and so in such a case she would also be aware that there was nothing left to try – and the question whether I should tell her would be irrelevant. Timmi accepted this, understanding my point, and didn’t need to go any further into the issue.
I never did have to decide whether or not to bring Timmi the news she dreaded more than any other. This was not because she knew it anyway, as we had discussed over lunch in the garden, but because when she was sedated just before being rushed to intensive care, no one knew that she would never awaken from her sleep.
During the last months of Timmi’s life, I sometimes imagined how she might leave us. In my mind, I saw us all at home. I saw myself lying in bed together with Timmi as she drew her last breath in my arms, surrounded by her family’s love. I wanted so much to give her that last blessing. In the end, the scene was quite the opposite; Timmi spent her last days and minutes in a deep coma, attached to a million tubes in a hospital room in which her parents were not allowed to sleep with her. This was the scene I'd always feared the most. But as it turned out, it was a blessing after all.
Timmi never had to know that she was going to die – whether from our bringing her the news, from the faces of the people who loved her, or from her own understanding that there was nothing left to try that might keep her alive at least a bit longer. She never needed to face the “cold dark room” that had haunted her poem. Until the very end of her conscious life she was able, like any other girl her age, to laugh together with the people around her, to think about boys, and to dream about the life she wanted for herself when she grew up.
Timmi died blessed by the belief that she would live.
Thursday, December 15, 2005
Unfortunately, Timmi is not out of intensive care, as we had hoped. An attempt was made on Shabbat to wake her in order to remove her tubes, but her breathing was not and remains not good enough for that. Today a very large quantity of fluid was again drained from one of her lungs, and sent to every conceivable laboratory; so far all of the tests have continued to be negative. Professor Cividalli, her oncologist, says that "the picture is very strange". But Timmi's "picture" has been very strange for a very long time now, so we are more or less used to that.
Besides her lungs not really improving for several days, her kidney and liver functions have gotten somewhat worse. As a result, some of the medicines she had been receiving were discontinued. One improvement over last week, though, is that she is now no longer fully mechanically respirated - her breathing is spontaneous but "assisted" by the machine (40% oxygen, for the doctors out there).
Now that the "fuller" lung has been drained (actually there was still some fluid left but obviously much less than previously), there is a chance that tomorrow another attempt will be made to take out the tubes and wake her up; the doctor with whom I spoke said that is still the direction in which they hope to move.
If I may make a request, please do not ask me individually what is happening on the intensive care scene. I know how worried many of you are, but I promise that I will give updates when my strength and presence of mind will allow. If there is any significant improvement, I will certainly make an effort to let you know as soon as possible following the improvement.
Love to all,
December 15, 2005
In my last post, I wrote about how hope sustained me throughout Timmi’s illness, and how it did not disappear even when I “knew” that her death was imminent. The story of Timmi’s hope is even more remarkable.
Timmi decided to take an optimistic view of her illness from the very beginning. I remember vividly how, when we first got the diagnosis of cancer, Don and I entered her room, sat down on each side of her hospital bed and closed the curtains around us for privacy. Don told her that the doctors had found some cancerous cells in her bone marrow. At first she didn’t quite understand what that meant. A few cells? We explained further. When she understood that those few cells meant that she had the disease called cancer, she cried, but only a little. Then she said, “I am absolutely, one hundred percent sure that I am going to get out of this totally healthy. There’s no question in my mind.”
I was very grateful for Timmi’s fighting spirit, both because I believed that her attitude would make the illness emotionally easier for her, and because I’d read that “fighters” are more likely to survive cancer. I suppose I shouldn’t believe everything I read, but the fact is that believing that Timmi’s optimism would help increase her chances of getting better helped both of us cope with a totally new and incredibly overwhelming situation.
During the course of her illness, Timmi’s moods were even more unstable than a healthy adolescent’s. For one thing, she sometimes needed to take steroids, which prevented her from sleeping and magnified any emotion she was feeling at the moment. In addition, she often got very tired – and angry – at having to be a cancer patient rather than a "regular" kid. Sometimes she even despaired of ever having a normal life. Sometimes, like all teenagers, she thought about death, and there were certainly times when she feared it (see "Choosing Life," July 2005). But even in the hardest of times, her hope never deserted her completely.
Timmi even expressed to me, many times, her feeling of gratitude that things were not worse. “Look at the other children in the ward,” she said more than once. “Some are going blind from brain tumors, some are disfigured by growths on their faces, some are as small as kids five years younger. I just need to get through these treatments, and then I’ll be able to go back to a completely normal life. I’m really lucky.”
I was with Timmi for her last evening in the pediatric ward, before her turn for the worse required her doctors to put her into the sleep from which she never awakened. She was feeling quite bad that day and had little strength to concentrate on anything. I was trying to keep her amused by watching television with her and making funny comments, when the nurse came in and said there was a young man outside the room who was asking to speak with Timmi. I went out, sighing. Surely this would be yet another of the “do-gooders and well-wishers,” as Don calls them, who come regularly to visit the pediatric ward.
I should explain here that the last people Timmi ever wanted or needed around her in the hospital were visitors who were neither family nor close friends. The children’s ward at Hadassah Hospital in Jerusalem has a very large staff of medical, paramedical, educational and therapeutic professionals. Hadassah is a teaching hospital, so on any one day Timmi could receive visits from residents, interns, medical students, professors and doctors visiting from abroad, sometimes in large groups. There were the nurses and the technicians, who took blood, hooked her up to the IV and to any other necessary machines, and administered her medication. Then there were the psychiatrists, psychologists and social workers, as well as an array of music, art and other arts-based therapists, all of whom wanted especially to work with our talented daughter (or so we were informed by the head of pediatric psychiatry). There were also the volunteers from Zichron Menachem and other organizations dedicated to helping children with cancer and their families, who by arrangement with the hospital visited the children every day, designed and conducted activities for them, and played with them or gave out presents.
On top of all that came the well-intentioned do-gooders. The hospital management would sometimes bring around groups of donors, actual or potential, so that the philanthropists could see their dollars at work. (Once, when such a group came around, the nurses went nervously from room to room, asking that the children try not to cry or scream during the group’s visit, so they wouldn’t give the visitors a bad impression!) The ward even “hosted” groups of teenagers, who came around as part of their education or consciousness-raising or whatever. (I remember one group of American kids who came as one stop on their tour to Israel; they looked into the rooms and distributed cheap, silly toys that their tour guide - or “educator” or whatever - had apparently encouraged them to buy for the poor little patients.) Individual men and women would also come to the ward, wanting to read to Timmi or bringing her treats for Shabbat or for whatever holiday was being celebrated at that time of year.
Timmi valued her privacy very highly, and these visits often disturbed her, although she did her best to be polite. So Don and I learned to keep a sharp eye out for the well-wishers, and to steer them away from her bedside.
That evening, I went to look for the young man who had come to visit Timmi, prepared to politely but firmly ask him not to disturb her. I found a good-looking young man who looked about Timmi’s age. “Hello” he said, and introduced himself. (I wish I could remember his name; here I’ll call him Jonathan.) “I’m a first-year student at the medical school here.”
Guessing that I was puzzled why such a young person would be studying medicine, he added that he was enrolled in the Atuda, a pre-military program through which students are allowed to attend university and complete their degrees in professions such as engineering and medicine before entering military service, in return for committing themselves to remain in the IDF and work in their fields for a number of years after finishing their compulsory service.
“As part of my program, I’m required to volunteer for a certain number of hours every week,” he explained. “I’m doing my service right here in the pediatric ward, visiting the patients.” “I’ll ask my daughter if she’s up to having company,” I told him doubtfully. I went back in the room, expecting Timmi to ask me to tell Jonathan to go away, but when I explained the situation she surprised me by saying, “Sure, tell him to come in.”
The two of them discovered very quickly that they had a great deal in common. Timmi was 18; Jonathan was 19. She’d been a counselor in the Religious Scouts; he’d been a counselor in B’nai Akiva, another religious youth movement. They were similar in a more unusual way as well: both were not only religious, but at the same time held a politically and socially liberal world-view – a rare combination in Israel. They spoke of the music they liked to listen to, and generally about their interests and pursuits. Jonathan was incredibly sensitive to Timmi, and knew how to “go with the flow” while speaking with her. From time to time Timmi had to stop talking, because she suddenly felt weak or because something began to hurt. When that happened, Jonathan simply sat quietly and waited until Timmi was ready to begin speaking again. At each pause, I expected that Timmi would say that she didn’t feel well enough to go on, but she rallied every time and continued the conversation. I sat amazed, as Jonathan and Timmi went on talking for about an hour. It seemed like it had been forever since Timmi was able to concentrate on anything for such a long time, let alone make the effort to keep a conversation going when she was feeling so weak.
When Timmi really was too tired to go on, Jonathan took his leave. “What a sweetie,” she said to me, smiling, after he left. My heart skipped a beat. I was extremely happy, on the one hand, that she’d enjoyed the evening so much. But at the same time I couldn’t help feeling a deep sadness as I thought about what might have been, had Timmi and Jonathan met under different circumstances. Perhaps he would have been her b’shert, the one with whom God meant her to spend her life.
I wish I could remember every word of that beautiful conversation. I would write it down and keep it with Timmi’s photos, drawings, poems and stories. I can’t. But she said one sentence that remains crystal-clear in my memory, and that will always embody for me the incredible strength and endurance of her power to hope. There she sat in her hospital bed - after her strength had been steadily leaving her for weeks, if not months – surrounded by beeping machines and connected by a tube in her chest to her lifeline of nutrition, medications and blood parts; there she sat, speaking earnestly with Jonathan. After one of the many long pauses in the conversation, Timmi looked up at this lovely, gentle young man and smiled radiantly.
“I’m also thinking of becoming a doctor,” she said.
Saturday, December 10, 2005
I wish I had a better report to send you. Except for Sunday, which was a very good day for Timmi, she has been feeling quite horrible, both physically and mentally. For the last few days of last week we attributed her state to the fact that on Tuesday we removed the last narcotic patch (which in and of itself is actually good news), and believed she was experiencing some of the symptoms of withdrawal. This seemed to be confirmed on Sunday, when on the fifth day after the removal of the patch she felt significantly better, even ate a small amount and kept the food down. But Monday she felt terrible again, and it has not really let up since. She is quite weak, sometimes needing to get around even in the house with a wheelchair, dozes off during the day but can't really sleep at night (even if she hasn't slept much the previous day), vomits two or three times a day (including at night, which is a new phenomenon), experiences various pains in various parts of her body and finds it hard to concentrate on doing anything. This situation, not surprisingly, depresses her and sometimes she feels quite desperate about it. Such a long time and no end in sight.
It has been suggested that at least some of Timmi's symptoms may be explained by neurological problems, and next week we will discuss the possibility of further tests next week, with her oncologist. She has been tested neurologically several times in the relatively recent past, but there may be more extensive tests that may be done.
It is terribly frustrating to Don and me not to be able to do more for her. Sometimes it feels to me, at least, as if I can't do anything at all for her, other than "maintenance" - giving her her medications, taking her to the hospital, connecting her to her TPN (the intravenous nutrition). I know how frustrated many of you are by your inability to help us - so we can all understand each other. This, of course, is of some help to me but none to Timmi.
I hope my next update will be more upbeat. In the meantime, Shabbat Shalom.
December 8, 2000
Timmi is now in intensive care, and has been for the past two and a half days. She entered the hospital Motzei Shabbat because of extremely frequent vomiting and a low fever. Her condition did not particularly improve on Sunday or Monday. Then, Monday night, her fever shot up, her blood pressure dropped and she started having serious trouble breathing. Tuesday morning a very large amount of fluid was drained from one of her lungs, and by the middle of the day she was in intensive care for respiratory failure, as even with an oxygen mask she was not getting enough oxygen.
Since mid-day Tuesday, she has been on a respirator, and under general anesthesia. (At least she is not suffering.) The X-ray of her lungs looked a bit better yesterday than it did Tuesday, and a bit better today than yesterday. Likewise, she has needed progressively less oxygen yesterday and today. On the other hand, her blood pressure is still not stable without a constant drip of adrenaline, although she is now getting a somewhat lower dose than she got at the beginning.
She will remain anesthetized and respirated at least until her blood pressure stabilizes, and also until her lungs look good enough in an X-ray to take out the oxygen tube. Once that happens, the tubes will be removed and she will be allowed to wake up.
Although all the cultures (and, thankfully, the biopsies) were negative, the most likely explanation for the respiratory failure is pneumonia of some kind; it looks viral. Although most of us usually sigh with relief when we hear an infection is "only" viral, in this case it is more worrying than if it were bacterial. Bacteria can be taken care of with antibiotics; viruses can not. And we have learned from a recent test that Timmi has just about no immune system, so viruses are scary. The fact is, though, that the overall picture has improved a bit from day to day, so things are not nearly as scary as they could be.
Her condition is defined as serious but stable.
Don will spend Shabbat in the hospital; I have been going every day for a few hours to speak to her and play music for her through earphones, in the hope that something is registering and that these things will help her. It's hard to be there for more than those few hours, though - intensive care is certainly very different from the pediatric, and even the bone marrow transplant, wards. I'm also not permitted to be there when any medical procedures are being performed. So this is all quite new to me.
Shabbat Shalom to all of you.
December 8, 2000
As I know my last message was very worrying, I wanted to let you all know that Timmi's blood pressure has now been stable for several hours without medication. As a result, the dose of morphine that she is receiving as anesthesia is being slowly reduced, and the doctors hope to be able to wake her and take all the tubes out within the next 24 to 36 hours. So maybe she'll be out of intensive care by Sunday; that would be very good indeed.
Thank you to everyone who replied with love and support to yesterday's message. I truly appreciate it.
Love and Shabbat Shalom to you all,
December 8, 2005
All human beings know what it is to hope, and many know what it is to “hope against hope.” But I can say now that I did not understand just how stubborn hope can be until Timmi’s journey through illness and, ultimately, out of this life. I discovered that, amazingly, hope has a wayof leaving some of itself behind even when it seems to have deserted us for good.
When Timmi first became ill, it was easy to hope. The doctors spoke of a 90 percent recovery rate for childhood leukemia, there was no reason to think Timmi would be on the wrong side of those statistics. And we had spent six months trying unsuccessfully to diagnose Timmi’s ailment. When she was finally hospitalized for tests, the medical staff was so puzzled by her combination of symptoms that I became convinced that she was suffering from a new and deadly virus without a cure, something like AIDS. So even though the diagnosis that every parent dreads - leukemia - naturally planted its seed of fear, in a bizarre way it was a relief to hear that Timmi was ill with a well-known, potentially curable disease.
My near-complete optimism lasted through Timmi’s first series of treatments and her first bone marrow transplant. When the initial side-effects of the transplant had subsided, and Timmi seemed well on her way to full health, it felt almost like starting a new life - as if Timmi were once again being born. Then came the first GVH, reminding us that things weren’t quite over. The GVH dried her itching skin until it cracked. To prevent the GVH from getting out of hand, doctors prescribed steroids, which bloated her and kept her from sleeping. The medication got rid of the rash, but also suppressed the GVH, so she had to stop treatment, which brought back the rash. And so on in a seemingly endless cycle. But throughout this period I still felt very hopeful, because after all GVH would fight the cancer; just so long as it didn’t get too strong, it was really a good thing. The medical problems that she experienced for the next couple of years made her life and ours difficult, but at least we had her with us – and that was the important thing.
Things were very different the second time around. Now, the statistics were unforgiving. No more 90 percent - or even 10 percent - cure rates; we were told that no one had so far survived a relapse of cancer after a bone marrow transplant. Still, the doctors told us, almost every day there were new advances, promising experimental treatments. I guess that was when we entered our Fool’s Paradise (see “Knowing and Not Knowing,” September 2005), when we latched on to every hopeful word we heard from Timmi's doctors, willfully pushing things we knew out of our consciousness.
As treatment after treatment failed to get real results, I could feel my optimism shrinking together with Timmi’s options. But the morning Timmi went into intensive care, I was amazed to see just how much of my hope still remained. When I came back to the pediatric ward to get Timmi’s things after accompanying her to the ICU, one of the nurses came up to me and asked how I was doing.
“I’m fine,” I said. “I understand that Timmi’s in the ICU because she needs to be on a respirator for a few days until we get her lung infection cleared up. It’s good she’s being sedated, because it would be terrible for her to be awake while she's on a respirator.”
“It’s really good you’re taking it that way,” the nurse said.
“What do you mean?”
“Well, most parents get very upset when their child is taken to intensive care, because of what that so often means.”
What that means? I asked myself. Oh my God, is she saying -
“No, I don't think about it that way,” I said to the nurse, and went out the door.
I looked back at the other parents in the room, and I could tell they knew exactly what the nurse had meant. I saw in their eyes that watching the staff wheel Timmi out of the room to an unknown fate had frightened them deeply, for Timmi and for their own children.
This is just a regular medical procedure, I repeated to myself.
During the month Timmi spent in the ICU, I fiercely held on to my optimism as time went on and the doctors tried day after day to bring her out of sedation. I came every day to talk and sing to her. I told her that we all loved her, and how happy we would be to be able to speak with her again when this was over. Then, after a bit under three weeks, the doctors decided that there was no use in trying, that Timmi's lung infection was incurable and that she would never be able to safely come out of sedation. When they told us of their decision, and that it was now a matter of a few weeks at most, I thought my hope was used up. During that last week and a half, I spent my visits to the ICU staring at the monitor that displayed her vital signs. At home, I spoke with the children and tried to helped them prepare for what was coming. There was no longer any doubt, no longer any hope. Or so I thought.
But when that phone call came, the shock was so great that I felt as if the police had called to tell me that Timmi had been killed in an accident. All those years of knowing that Timmi’s death was possible, then probable, then inevitable – none of it had prepared me for the moment my worst nightmare came true.
It was only then that I realized that hope had never really left me, that it had lived on until the very moment my daughter was finally gone; Timmi and my hope for her had died together. Only with its loss was I able to see that – incredibly – it had been present all along, sustaining me through times I would not wish on any other human being. The Greeks had it right - when Pandora opened the box and let loose all the catastrophes and tragedies that plague this world, she also freed Hope, the gift that enables us to go on in the face of the seemingly unfaceable. Without it, I could not have survived the knowledge that I was going to lose my child.
Even more amazing than the stubbornness of my own hope was the tenacity of Timmi’s. I’ll write about that in my next post.
Thursday, December 01, 2005
There is not much new to report this week. Timmi continues to sleep alot of the time and to feel very weak when awake. At the suggestion of her doctor, we have been trying to find things that she can eat, with a view to reducing and eventually replacing the TPN (liquid nutrition) that she gets intravenously, but with limited success. Usually eating makes her feel awful, so though she tries, there is only so much she can make herself eat.
We did find a lovely woman to be with Timmi twice a week, a very warm person with whom Timmi feels quite comfortable. So now I am able to schedule work days with much more confidence, which makes a huge psychological and moderate financial difference to me.
November 17, 2000
The past week has been pretty much the same as previous ones, with Timmi feeling very weak and spending the greater part of her time sleeping or in bed, and not able to get around much without the help of a wheelchair. An exception was Tuesday, when after the hospital we went to a restaurant, where Timmi actually ate a small amount of food, enjoyed it and did not feel horrible afterwards. We then saw a movie together ("Chicken Run"). When we came home she stayed up with the rest of us and we had a nice family evening. Yesterday she reverted to the previous pattern, and today was worse. Still, days like Tuesday keep me going.
I would like to add that there is no need to worry if an update does not come before Shabbat on any particular week. It does not mean that something terrible has happened, just - most likely - that I was very busy and/or tired that Thursday and Friday, and that there was little new to report.
November 24, 2000
Another week much the same as the last. Up days, down days, on days, off days. So far, though, Timora had two "good" days this week – Monday and Wednesday - during which she was awake for most of the day, and had the strength to participate to some degree in life. Yesterday (Wednesday) was particularly good - she spent the morning and noon hours enjoying the company of her companion, who seems even nicer the more we get to know her. We even got out to take care of her business at the bank. Earlier this week she also got to the Education Ministry with Daniel and registered for the Winter term matriculation exam in Civics, and when she has the strength is studying for the exam. After each of the good days, though, Timora has so far always had a particularly sleepy and weak day.
I myself have been sick the last few days (some kind of virus), and again had some insight into what life is like for Timora. If I get so frustrated by a couple of days of inability to get anything done or even concentrate on reading, how must it feel for her, who every day has to contend with some degree - sometimes an extreme degree - of physical weakness, and at least some - sometimes a lot of - pain, not to speak of imbalances that effect her mood and her ability to cope! It is impossible to always be in touch with this feeling in such a deep way, though - if I were, I would be unable to function. So as always, as I get better I will have to return to tempering my empathy with a certain dose of repression.
Shabbat Shalom to all.
December 1, 2005
Have you ever noticed that when you ask a mother how she is, nine times out of ten she’ll answer by telling you how her children are doing? While Timmi was ill, of course, my world naturally revolved around her and caring for her. When things were going relatively well for her, I was happy; when things were hard for her, they were hard for me. My identification with Timmi reached a point where I experienced my own (minor) illnesses by comparing them to hers. But even now, after Timmi is gone, I find that my emotional highs and lows correspond to a very impressive degree with the ups and downs of my children’s lives, and with how much “quality time” I get to spend with them.
This past week, for example, has been a very good one for me. This is partly because my field internship is going so well, as I'm fulfilling a dream at least fifteen years long and learning to become a psychotherapist. (One of the advantages of being 50 years old is that today I know just what I want to do, what I like doing and what I'm good at doing.) The course is interesting, I’ve started to see clients and I’m getting very helpful feedback from my supervisor. But if you asked me what was the high point of my day on Monday, for example, I wouldn’t answer that I'd had an excellent interview with a client, or that I'd finished the writing I needed to do for my studies – although both gave me a deep sense of satisfaction. No, the best part of Monday was going to see a movie (“Corpse Bride”) with Elaine and Danny – even though the movie was pretty silly – and then sitting and eating dessert with them at the mall’s fast food court – even though as a general rule I detest both fast food and malls. Just being with the kids was enough.
Another high point this week was Friday evening, when Sheila came to Shabbat dinner with the young man she’s seeing (whose name, unbelievably enough, is Tim). Tim, like our other adult daughters’ partners, fits right into our family, and we all feel very comfortable with one another. So we spent the evening talking and laughing, discussing a wide range of serious and not-so-serious subjects. The happy presence of so many of my children – and the reminder that all of my adult children are now, blessedly, involved in serious relationships with lovely partners – filled me with so much joy that I completely forgot how tired I was after working very hard at my fieldwork and in my home all week.
One of the many advantages of having a large number of children is that there's always at least one whose life is going well. When I’m feeling low, whether because I’m worried about one (or more) of my children or for any other reason, I can always remember that there's someone in the family for whom life is good at that moment. This thought gives me an instant lift – almost like popping a pill, but with no side effects. And that lift becomes a real high when we also spend happy time together. (Interesting thought – am I addicted to my children?).
There’s a downside to my supersensitivity to my children’s emotional state – especially, of course, to their pain. I still find it hard sometimes to distinguish between their troubles and mine, and must struggle not to identify with them so closely that I make their pain my own. Not only does this kind of over-identification make me less able to help with my children's problems, but it is not healthy in any relationship, particularly between a parent and a child. Though I’ve gotten better at respecting this kind of boundary between myself and my family, it will probably remain an issue for me for the rest of my life.
Still and all, when life seems overwhelming – and life really can sometimes feel like nothing but a series of painful losses – it’s days sharing love and fun with my children, as I did with Timmi that Tuesday five years ago and as I continue to do with the others whenever I possibly can, that keep me going.
Friday, November 25, 2005
Timmi had another mixed week this past week. On Shabbat she developed a low-grade fever and so we brought her to the hospital on Sunday. The fever itself rose very slowly throughout the week, despite our giving her intravenous antibiotics three times a day at home, and it looked like we might have to hospitalize her, but Thursday evening the fever dropped, and was gone by Friday. Also, the blood cultures taken on Sunday were negative, so we discontinued the antibiotics and, of course, Timmi stayed at home.
On Sunday we spoke to her oncologist, Professor Cividalli, together with her doctor from the bone marrow transplant department, Professor Or, about Timmi's ongoing problems (lack of sleep, nausea and vomiting, weakness and intermittent pain). Professor Or is of the opinion that most if not all of these problems are the result of too much GVH, although there is no way to be sure (at least the pain could be from returning tumors). He and Professor Cividalli decided to try giving her Thalidomide, which is effective against nausea, helps with sleep problems and has also been approved for use against GVH. (When we pointed out that GVH is what we want, Professor Or said that if what she has is GVH, she has too much of it.) In addition, it may theoretically also be somewhat effective against some kinds of cancer. He called it a "miracle drug".
She took the first dose Sunday night, and Monday there was a very dramatic improvement - she had no nausea and in fact ate several times during the day, and she had much more energy and significantly less pain - we went to the Malcha Mall and she bought several pairs of pants and shirts. I was beginning to believe that we were indeed seeing the effects of a miracle drug, but then that evening she started having serious pain again. The next two days she was again very tired, and did have some pain, though less. And while the nausea did disappear, eating seems to cause bad stomach pains. Since then things have been up and down - while generally she feels better, she is often weak or in stomach pain, and the other pains have not totally disappeared. However, I know that the medicine was not really supposed to produce an instant miracle, so we still hope that Timmi's condition will improve steadily, even if there are ups and downs along the way.
The fact that her condition did at least seem to respond to the Thalidomide makes me hope that maybe we really are seeing GVH rather than a relapse. Then, if we can just help her feel well enough, she may really be able in the foreseeable future to resume her life, if only on a limited scale.
Shavua Tov to all.
November 18, 2005
Just about everyone longs for a miracle at some time. The poor man dreams of finding that pot of gold at the end of the rainbow. The lonely woman fantasizes that one day she’ll kiss the right frog, and he’ll turn into a prince. Entire peoples believe that God will smite their enemies, if only they pray fervently and faithfully, and live pure enough lives. And the parents of a mortally ill child cling to the hope, however ephemeral, that she will be restored to full health against all the odds - whether through modern medicine, alternative treatments or prayer. After all, Jews, Muslims and Christians alike were raised on accounts of God’s direct intervention in human affairs; the Matriarch Sarah’s pregnancy in her old age, the parting of the Red Sea, and Muhammad’s ascension to heaven immediately come to mind. Why shouldn’t we expect miracles?
The sages of the Talmud, however, warned us that the age of human ability to converse directly with God – that is, prophesy – had already come to an end before their own time two millennia ago. They taught that we may not rely on miracles - or what we usually mean my "miracles" - that is, Divine actions that dramatically intervene in the course of nature. At the same time, however, they called upon us to acknowledge the daily miracle of the continued existence of the natural world. Since my journey through Timmi's illness and death, I’ve come to appreciate the profound wisdom of that philosophy.
While Timmi was ill, we heard tell of miracle-working rabbis, usually Cabbalists, who were said to cure hopeless illnesses and conditions through prayer. More than once well-meaning people offered to speak to a particular rabbi on Timmi’s behalf, but Timmi was adamantly opposed. (The reason she gave was actually quite funny. She had a friend in grade school who'd suffered for a long time from constipation, until she received a blessing from one of the more prominent mystics in Israel - upon which her trouble disappeared. After that, medical mysticism was indelibly associated in her mind with the results, so to speak, of that particular intervention.) I myself am very much the rationalist, and mysticism - especially Cabbalah - generally leaves me cold. But I always wondered whether it might have been worth trying to convince Timmi that she had nothing to lose by allowing others to seek the blessings and prayers of spiritual leaders. (And joking aside, when you come down to it, her friend really had been healed of a serious problem.)
I changed my mind after hearing the stories of other bereaved parents who had in fact gone to seek a blessing from a “holy” man, sometimes more than one. They described crowds of desperate people lining up for hours for the chance to spend a minute in the mystic's presence, and then being hustled out after receiving a few brief words for their children. The experience left them feeling frustrated, distressed and even somewhat humiliated. But far worse was their deep pain at seeing their hopes dashed as their children, after being blessed by men who purportedly possessed supernatural powers of prayer, nonetheless continued their inexorable and final journey away from them. Some simply felt angry at those they saw as having disappointed them. Others, however, became bitter and disillusioned, and lost the faith that had sustained them until then.
As I’ve written more than once (see “Choosing Life, Choosing Faith,” August 2005, and “Loving God: A Partial Response,” September 2005), my faith is too precious to me to risk losing in a gamble on what God will decide to do at any particular moment. And I'm certain that the surest way for me to lose that faith would be to expect Him to perform miracles on demand. I certainly don’t know God’s mind; I haven’t received any postcards from Him, either. What I do know is that God has been an enormous source of the strength and resilience that have enabled me to face the suffering that I’ve both experienced and seen others experience in this world. And my faith enables me to feel thankful for my life despite that suffering, and to look toward the future with hope.
This sense of thankfulness is nurtured by the Jewish tradition. When we awaken in the morning, the first thing we are meant to do is thank God for returning our souls to our bodies after sleep. We then go on to recite a set of benedictions expressing our thankfulness to Him for making us who we are, and for all the blessings that He has bestowed on us: our bodily integrity, our eyes to see, our ability to stand and move about – even our clothes and our shoes.
In our morning prayers, we bless God for "in thy goodness [renewing] the work of creation every day, constantly.”* We also thank Him "for our lives which are in thy charge, for our souls which are in your care, for thy miracles which are daily with us, and for thy continual wonders and favors - evening, morning and noon." We are not meant to take the world's continued existence for granted. Every day that we awaken to find that the sun is still in the heavens, and the earth is still teeming with all of its myriad forms of life, is a new gift to us from the Creator of all life.
On Shabbat, we add special words of praise and thanks when we conclude the set of psalms that we recite as a preliminary to our prayers. It contains some of my favorite verses:
Were our mouth as full of song as the sea [is with water],
And our tongue with ringing praise as its roaring waves;
Were our lips full of adoration as the wide expanses of heavens,
And our eyes sparkling like the sun or the moon;
Were our hands spread out in prayer as the eagles of the sky,
And our feet as swift as the deer –
We should still be unable to thank thee and bless thy name,
Lord our God and God of our fathers
For one one thousandth of the countless millions of wondrous favors which thou hast conferred on our fathers and on us.
Life, then, is itself an ongoing miracle, for which the Jewish tradition teaches us to feel a deep sense of gratitude. True, in the aftermath of Timmi’s death there was a period during which I was unable to be thankful for anything; it truly felt as if I had no blessings left to count. But simply saying my morning prayers of thanks, day after day as the months and years have passed, has helped rekindle my sense of gratefulness for the all I’ve been given. And I have indeed been given a tremendous amount – my health, my friends, my community and, most importantly, the love of a wonderful man and seven amazing children.
Our sages, were they here today to hear my story, would not be surprised in the least if I were to tell them that God did not perform a miracle enabling Timmi to remain in this world. But I know that they would be thankful together with me that I was given the miraculous privilege of bearing, birthing, and spending eighteen precious years together with her.
*Translation of all prayer verses by Philip Birnbaum, Ha-Siddur Ha-Shalem.
Saturday, November 12, 2005
Like the updates to my community, this memoir is nearing completion. It will end in about a month and a half, near the fifth anniversary of Timmi’s death. As I look back at those days five years ago, when Timmi’s life was drawing to a close, I find myself thinking a great deal about beginnings and endings, and – more so, perhaps – about endings and beginnings.
Last month, the Jewish High Holidays ended with Simchat Torah (literally, “Joy in the Torah”), which celebrates the symbolic “marriage” of the Jewish people and the five Books fof Moses. We honor the Torah by dancing with it – as at a wedding – for seven “rounds.” Then, we conclude the yearly cycle during which all five Books are read aloud in the synagogue during services, by chanting the last portion of the Book of Deuteronomy. Each person present has a chance to be called up to read (or have another read for him/her), and to recite the traditional blessings on public Torah reading. Immediately after the very last verses of the Torah are read, the congregation listens to the first chapter of Genesis, and the cycle begins anew. We believe that Torah can never truly end – its conclusion will always generate a new beginning, as each year we add to and deepen our knowledge and understanding of the sacred text through new insights, based on past years' learning.
In order to enable all present to be called up and recite the blessings, most of the portion is read over and over again. However, the Torah’s concluding verses, as well as its first chapter, are read only once. It’s considered an honor to be called up to bless either of these readings, and those chosen for the honor are traditionally called “grooms” of the Torah and of Genesis. In our community, the women hold a separate Torah reading, complete with “brides” who are called up as the Books of Moses end and begin again. In the joyful spirit of the festival, which can get quite wild and even a bit rowdy, the “brides” sometimes put on veils or other trappings of a wedding.
This year, the Torah’s “bride” was chosen in honor of her receiving a PhD in Talmud. And I was called up to renew the cycle by blessing the reading from Genesis, in honor of my beginning my studies toward a new career in social work. A friend brought me her bridal veil, and I thought I'd wear it just for the fun. But in the end, when I was called up, I was unable to put on the veil. Although I felt grateful to have been chosen to perform this mitzva, I just couldn’t join in the boisterous atmosphere. As in each of the past five years, the ending and beginning of the Torah cycle touched a deep sadness in me.
On Simchat Torah ten years ago, Timmi was honored as Genesis' "bride,” almost exactly a year after she had chanted the first chapter of that Book at her Bat Mitzva. It was an optimistic time; Timmi had completed her first course of chemotherapy and a bone marrow transplant, and was not showing any debilitating side effects from her treatment. After concluding the chapter, she recited the “Benediction of Deliverance,” by which Jews traditionally give thanks to God for enabling them to survive a dangerous experience. Many members of our community cried then, releasing the fears that Timmi’s illness – and treatment – had evoked, as well as their happiness at her recovery.
Now, I recited the blessings and stood before the Torah as a lovely young woman named Noa started the Book of Genesis on my behalf. The Torah's “bride” had chanted its concluding verses by herself; I'd thought of doing the same, but decided against it, knowing that I would get choked up and might be unable to read aloud. In a way, though, it was harder to have Noa read for me. My eyes filled with tears as her clear and strong chanting brought me back ten years, when Timmi stood in her place singing the chapter in her own sweet voice. But even more painful was the memory of my daughter standing in my own place, reciting the traditional blessings on Torah reading and adding her thanks to God for having survived the previous year.
The ongoing cycle of Torah reading reflects the cycles by which we all live. Foremost among these, perhaps, is that of the natural world, as the earth travels its yearly cycle around the sun. In the natural order of things, life and death themselves are a cycle, too. We are born, bring children into the world, and raise them to become adults who, we hope, will carry on our work in the world and will bear their own children. Then we die, leaving behind us the seed out of which life will continue to be generated, and our own lives’ purpose continued.
A child’s death shatters that natural cycle. And so as I stood before the Torah that day, I was intensely aware that Timmi's and my roles had been reversed: it was Timmi that should have been following in my footsteps, and her children – my grandchildren – in hers. Instead, it was I who was standing where she had before me, with no hope of grandchildren through whom my legacy will join hers to live on after I've gone to join her in the next world. God willing, I will have other grandchildren who will stand before the Torah and bless their heritage. God willing, these grandchildren will carry on the work I've tried to do in the world, adding their parents’ contribution and their own to what I myself have bequeathed them. None, though, will fully bear Timmi’s unique imprint.
I do not mean to say that the end of Timmi’s corporal life on this earth also extinguished her spirit. Timmi did leave a great deal of herself behind – in her writings, in her friends, and most of all in her family. Lisa, Sheila, Shari, Elaine, Aimee, and Danny – each carries a spark of Timmi inside, and I have no doubt that through them, and then through their children, her light will continue to be transmitted from generation to generation.
Still, a part of me – a part of us all – will never accept the tragic and unnatural truth that Timmi did not stay with us long enough to bring new life into the world before the end of her own.
Monday, October 31, 2005
Timmi continues to have "up days" and "down days" from the point of view of her strength. Saturday night we did go with her to the Hanoch Rosen performance, which she enjoyed thoroughly, and the next day three of her friends from school came to visit for her birthday; she felt relatively well and had a very good time with them. The next day, though, she spent in bed and the day after was still feeling quite weak. Yesterday, she woke up with a certain amount of energy, but in the middle of the day started having pain in various places.
Now it is the pain that has us worried. It actually got somewhat stronger today, and if this continues tomorrow we will again have to raise the dose of her pain patches. The pain is, unfortunately, in many of the places where she had the largest tumors in the past. This, of course, is scary. But she also has various other kinds of pains which are more indicative of post-transplant syndrome. The doctors still don't understand what is going on. Her liver functions, for example, are improving, but none of us (including the doctors) know whether this is good or bad, because if the liver dysfunction was due to GVH the improvement would mean that whatever GVH she had is disappearing. Actually, that would be consistent with an interpretation of the renewed pain as resulting from renewed tumor growth. We hope not.
Next week we will see if the improvement in her liver function has come with an improvement in her blood clotting function; if it has, that will enable a biopsy of her liver to be performed, which will give us a better idea of whether she indeed has some GVH.
Her mood remains relatively good; today she was with us for several hours in D. and B.'s sukka and really enjoyed herself, even ate a little. Then we came home and saw a video together; now she is working on a compiling and typing project for Lisa. As long as she has the strength to be active and keeps busy, her emotional state is usually quite good (the same can certainly be said for me!).
I wish all of you a joyous Simchat Torah,* and a Shabbat Shalom as well.
*Simchat Torah - the festival immediately following the week of Tabernacles.
October 31, 2005
At the beginning of the last school year, I wrote about Timmi’s relationships with other children her age (see “Back to School, September 2004). I wrote that in the last year of her life Timmi was very friendly with a group of girls at her school, who helped her when she needed it and tried to do nice things for her (such as her birthday celebration five years ago). But she never had the opportunity to form the kind of truly intimate friendships that are the hallmark of most girls’ adolescent years. This was because neither Timmi nor her peers were old or mature enough to bridge the enormous gap that her illness and brush with mortality had opened between her and those who had, thank God, never had such experiences.
Timmi’s cancer and death opened the same kind of gap between our nuclear family and our own friends - and even our extended family - with the result that we felt painfully isolated, with only each other to understand and share our pain. Over the last years, although it's seemed at times as though it would never happen, our journey has taken us to a place where we are able once again to enjoy the give and take of friendship.
After Timmi’s cancer was diagnosed, I didn’t feel isolated at first. My friends were universally supportive, and our religious community rallied to provide whatever help it could (see “Community,” October 28, 2004). I needed to talk and talk, and there was no shortage of willing ears. My children’s experience was less positive; being so much younger, most of their friends had no idea how to talk with them about their sister’s illness. A few of the older girls’ friends, though, visited Timmi quite often and almost always succeeded in cheering her up, even during her seemingly interminable stays in the hospital. (Some of my own friends also tried visiting Timmi in the hospital, but it only made her feel uncomfortable; who needs old people whom you barely know hanging around when you’re feeing sick?)
But the picture changed when Timmi’s cancer relapsed. All of a sudden, things got infinitely scarier; we were no longer within the “80 to 90 percent” leukemia cure rate that the doctors were so fond of citing, but headed for the dark side of the statistics. It wasn’t so easy now for me to be upbeat and optimistic, or for my friends to know how to be with me. Most had little idea how to be sensitive to whatever I was feeling at the moment, and go with it. As a result, some friends chatted about superficial matters to which I found it hard to relate. Some – including friends I’d known for many years – even began avoiding me altogether. Others looked at me with mournful eyes, just when I felt like either talking about Timmi in a positive vein or distracting myself with universal, day-to-day concerns. It was as if I wasn't allowed to be cheerful.
Once, coming out of synagogue, I was enjoying listening to a casual friend describe to another her recent trip to Europe . When she caught my eye, though, she stopped talking, composed her face into its saddest expression, and asked (in a voice dripping with sympathy), “And how’s Timmi?” I wanted to punch her. Another time, I was laughing at a funny story someone had just told me when a (different) casual friend came up and said, “Why are you laughing?” She then paused for a few seconds and asked the inevitable question: “What’s happening with Timmi?” Although I have no doubt that these friends meant well, the message I heard was, “Have you forgotten? Your daughter’s sick! How can you think about anything else?”
After Timmi died, things got worse. The emotional gap between myself and my friends widened into a yawning chasm (or, to use my usual metaphor, the divider between us became a seemingly impassable wall). Some of the problem was that I myself was no longer in a place where my friends’ love and concern could do me any good. There were a few of my friends who invested a great deal of energy in helping me get through my ordeal. Tova took me to lunch every week for months during my first year of mourning, and listened carefully and empathetically to everything I had to say. Debbie, Barbara and Veronika also called and invited me out with them as often as they could, and continue to do so to this day. I could see how much they loved and cared about me. But conversation with even my most sensitive and empathetic friends failed to make as much as a dent in my feelings of despair and isolation. And there were so many things that I couldn’t find the words to explain to others outside the “club” of bereaved parents. Only a year ago, I wrote Robert Avrech (the author of “Seraphic Secret”) that when friends ask me how I am, “I want to say that I’m no longer the person I was, and often feel as if I don’t even know who I am anymore. But I almost never say those things. I’ve finally learned to say “fine” when people ask, even if I’m not. The true answer would always be too long, too complex, and too true for most people to handle.”
Another problem was my friends’ genuine feeling of helplessness; they were at a loss as to how to behave. For example, some people didn’t invite Don and me to social gatherings, being sure that we wouldn’t want to attend. (With these friends, it was fairly easy to explain that it wouldn’t offend us to be invited, and that we could be counted on to accept or decline the invitation according to where we were emotionally at any particular time.)
But some people said and did things that so hurt and angered me that I didn’t see how I could maintain my relationship with them. During my first year of mourning, I had lunch with a woman whom I had known for years and whose company I greatly enjoyed when we would meet occasionally. Being utterly incapable of making small talk of any kind at that point, I tried to describe to her the depth of my depression. “Sometimes I feel as if there’s no point in living any more,” I said. She reacted by getting angry, and telling me that I had no call to say such a thing when I have other children who need me. I was so shocked at the vehemence of her reaction that I just shut up, and didn't bother to explain that of course I know I have other children and wouldn't dream of actually doing anything to end my life, and that of course I understand they need me and I spend most of my energy and passion on them and, and, and... No, I just quietly allowed the lunch to end and never went out with her again (neither of us has called the other since then).
More inexplicably, there were people, including one of my oldest and closest friends in Israel, who simply stopped asking me how I am. Whenever I spoke with this friend, she directed all conversations either to herself or to neutral subjects. If I began speaking of Timmi or of my mourning, she would change the subject within seconds. At times such as these, I felt a deep sense of betrayal, over and above the deep loneliness that never seemed to leave me.
Don and our children had similar experiences, finding that people with whom they had thought they were close were unable or unwilling to share their pain, or that they disappeared altogether.
I must admit that for a long time, although Jewish law forbids it, I remained angry with and resentful toward those people that I felt had deserted me. I felt I had lost not only my daughter but also most of my friends – as well as the ability to derive comfort from my relationships with those friends who had remained faithful. Those feelings only intensified my grief and deepened my despair. As grudges always do, the rancor I harbored clouded my emotional life, threatening to permanently embitter me.
But suddenly, a few months ago, I looked into myself and discovered something marvellous - all traces of my bitterness are gone. I found that I finally believe and understand at the deepest level what I'd been telling myself for years: people are only human. The very notion of a child’s mortality is so frightening that many people are unable to face it. The fact that I lost my daughter brings home to other parents the unthinkable prospect that they also could lose a son or a daughter. If there are some who can’t handle being reminded of this, who am I to judge them? All I feel now toward them is empathy; more importantly, I've forgiven them. Although they don’t have the language to express it, or even the ears to hear me express it, in their own way they do share my sadness.
At the same time I made this discovery, I realized something even more amazing: my friendships have begun once again to give me an intense pleasure that I thought had been lost forever. I can again speak with a friend and feel understood; sharing my troubles lightens some of the burden, just as it did so many years ago. I can again listen to others with a fully sympathetic ear; I’m no longer so traumatized by my own family’s catastrophe that I can’t give my full attention to other people’s lives and experiences. (And it’s a good thing, too, as I’m now training to be a social worker!) When I look around me during Shabbat services at my synagogue, I'm blown away by the number of people whom I care about, who care about me, and with whom I have a relationship that contributes toward my feeling of being held – embraced – by my community.
My renewed capacity for close friendship bore fruit this summer, when I was in New York for the first semester of my studies. I hadn’t lived in New York since I was 17, when I fled the city for college, intending never to look back. This summer, I took advantage of my two months in Manhattan to reestablish relationships with friends whom I hadn’t seen in decades. And I was fortunate enough to meet and become very friendly with several new people, with whom I hope and expect to become closer during my next two summer terms in New York.
When I look at my family, I see a similar process at work. Don and the children have healed at least some of the friendships that were hurt in the wake of Timmi's death, and have forged some new ones. And all four of my adult daughters are now in serous romantic relationships!
I ended last year’s "Back to School" post with a prayer that in the future our family would make and deepen relationships with those who haven’t had our experience. “I pray that what we went through won’t impoverish our ability to relate to other people, but will enrich it," I wrote. "Most of all, I pray that our pain will build not walls of isolation but bridges of empathy and love.” It seems that this has at least begun to happen for all of us, and for that I am very, very grateful.
Saturday, October 22, 2005
We are now celebrating the middle day of the seven-day festival of Succot (the Feast of Tabernacles). During this holiday, we eat and, where possible, sleep in a temporary dwelling (succah) made of wood, cloth, or (in the modern age) plastic, with a roof consisting only of palm leaves, woven bamboo mats or other material derived from the plant world. We do this in order to remind ourselves – to reenact, in a way – the existence of the Children of Israel during the Exodus from Egypt and their forty years’ wandering in the desert: vulnerable, insecure, and dependent only on God.
Paradoxically, perhaps, Succot was also defined by our Sages as our “time of happiness,” the holiday during when we are enjoined to rejoice. (Our own wooden succah is located the parking lot, six floors down from our apartment. We’ve seen it destroyed one year by a car and blown away another year by a storm, and we’ve had neighbors play “pranks” on us such as throwing bottles filled with water onto the succah's roof. There is a running argument in our family as to whether we should be envious of people who build their succah on an open balcony of their apartment or in a garden adjoining their home, because they can enjoy the holiday that much more easily, or feel superior because in our vulnerablility we are really, truly fulfilling the spirit of the commandment.)
One of the ways we add to the holiday's joy is through hospitality – inviting guests, called by their Aramaic name ushpizin, into the succah to share a meal with us. According to Jewish tradition, we welcome more than our friends and family into our temporary home. It is said that on each day of the holiday, the spirit of one of our forefathers comes to visit. On the first night we welcome Abraham, on the second we receive Isaac, and on the third, Jacob – followed in turn by Joseph, Moses, Aaron and finally by King David. Our family marks this by singing a special song welcoming each visitor from the ancient past to our holiday meal. It's really a children's song, but we love singing it even though our children are now adults (or almost adults) – it's one of our little family rituals, which makes us feel close to one another by reminding us of all the years we've been singing together, in the succah and everywhere else.
On the first (and most important) night of the holiday, when we had just finished our song of welcome, Shari surprised us by saying with a smile, “Maybe tomorrow Timmi will come and be our guest in the succah. It will be her birthday, after all.” I carefully watched for the other children’s reactions. Not so long ago, they would most likely have looked down at their plates and not said anything. During the first years of our mourning, some might even have left the table in order to cry in the privacy of their rooms. But when I looked at Aimee, she too was smiling. “Maybe we should ask Angela” – a friend who sometimes sees the spirits of those who have left this world (see “Healing," August 2004) – she said, half-laughingly.
I think that at that moment all of us at the table felt bound to each other in a mixture of contradictory feelings – a warm happiness at our memories of Timmi, a deep sadness that she will never again sing with us, and an intense yearning for the possibility that, in honor of her birthday, she might actually make this Succot “our time of joy” by joining the Patriarch Isaac the next evening as one of the ushpizin at our table.
Sunday, October 16, 2005
A quick and optimistic update for the New Year - one of Timmi's doctors called this morning and said that because at least some of her discomfort may be due to GVH, they would like to try a new anti-GVH drug that may ease her symptoms but will not totally suppress the GVH (and thus risk a fast and strong relapse of the cancer). It is given one dose at a time, and after each dose her condition is evaluated after a week or two, in order to see whether she should be given more. This measured response to GVH is indeed something new, as up to now every time she has had GVH the medications she has received have totally suppressed it - the last time, causing the terrible relapse she had this summer. If, however, there is a way that she won't have to choose between being miserable with GVH or getting her cancer back, that would be wonderful news indeed.
Of course, we don't know even whether Timmi is in fact suffering from GVH, and if she is whether the new medication will help. But this is the first time in several weeks that we have heard of something which has a chance of helping her feel better. So I wanted to share it with you all.
Shana Tova* again,
October 7, 2000
Well, the "new" medication that the doctor told me last Friday that they want to try turned out not to be so new after all. The plan now is to give her a light dose of a certain kind of chemotherapy (which she has had before) once a week, in the hope that it may help with the GVH, if that is what she is suffering from, or if her problem is some kind of a relapse then it may help with that as well (it could be, of course, that Timmi is suffering from both). In addition, she is now getting a very low dose of steroids, hopefully enough to help her feel a bit better but not enough for nasty side effects.
Tuesday she got the chemo, as well as some plasma, which apparently made her feel somewhat better temporarily, as she was awake and participating in family life for a few hours that afternoon. Other than that, however, the week has been mostly a dud, with Timmi spending all day in bed (sleeping most of the time) on Monday, Wednesday and most of yesterday. When she was awake those days, she felt awful, with a perpetual headache, pain in her stomach and the soles of her feet, nausea and vomiting and such weakness that she had the strength to do nothing.
Yesterday I spoke with Nathan Cherney about the pain and at his suggestion we added a "pain patch" of Fentanil (a kind of narcotic). He will also speak with Professor Cividalli about what more may be done for her.
Today, the steroids seem to have kicked in. She was up early and has been up since, tried (unsuccessfully) to eat, watched a video, read and has been generally awake and mentally if not physically active. The downside of the steroids is that she hardly slept last night. Also, the extra Fentanil seems to be working, as she has been having significantly less pain so far today.
We hope that her renewed strength will last, and that the sleeping problem will be solved. Also, of course, that the steroids, however low the dose she is getting, will not suppress any GVH that she may have and that may be holding the cancer at bay.
Shabbat Shalom and G'mar Hatima Tova.**
October 13, 2000
There isn't really anything new to report. We had up days and down days, down days being those during which Timmi slept most of the time and felt quite bad when awake, and up days being those during which she had the strength to stay awake and read, watch videos, knit etc., despite not feeling very well physically. Her mood, when awake, has been pretty good, considering. Also, she is now sometimes able to eat a small amount and keep it down.
The doctors have no explanation for her symptoms, which now include pain in some not-very-encouraging places (various bones). The final results of the biopsy that was done on her stomach lining showed no evidence of GVH or anything else specific. Because her liver function improved somewhat after the treatment she received last week, after Succot we will re-check her blood clotting function in order to see whether that has also improved, and sufficiently to enable a liver biopsy to be performed. In the meantime, we are hoping that what we are seeing is not some kind of relapse, but rather some kind of GVH or other effects of the transplant.
One nice thing is that on Saturday evening we and Lisa are hoping to take her to a performance by the mime Hanoch Rosen, for her 18th birthday, the Hebrew day of which falls just then (and Sunday). We really hope she will be up to it, and will enjoy herself and be able to stay to the end.
I wish all of us a year that will change direction radically from the way in which it has started, and bring peace, prosperity and good health to all of you who are reading this, as well as to all of those of us who live in this troubled land.
Shabbat Shalom and Hag Sameach,***
* Shana Tova – Happy Jewish New Year.
** G’mar Hatima Tova – A greeting given before Yom Kippur (the Day of Atonement), meaning more or less “May you be inscribed in the Book of Life” during the coming year.
*** Hag Sameach – Happy Holiday.
October 15, 2005
Readers who have been following this blog know that in each post I try to find and develop a theme common to what I was experiencing five years ago and where I am today. But for the last two weeks I’ve been reading and rereading the updates to my community around this time in 2004, and haven’t been able to find a single thread connecting my life then and my life now. So what can I write about? I asked myself. Then I realized that the very fact that things are so different today than they were then is very big news indeed. Now, at the time of year at which Jews are called upon to return to the spiritual path that God has set out for us, I realize that although my spiritual journey is still far from its end, through God’s grace I am well on my way to returning both to the work I was meant to do in the world, and to a part of my inner self from which I was separated when Timmi died.
Last Thursday, we observed the Day of Atonement, Yom Kippur. Yom Kippur is the most important day of fasting and prayer in the Jewish calendar, as it is the day on which we may receive forgiveness from God for our sins of the previous year (see “Forgiveness,” September 2004). In order to be forgiven, Jews are enjoined to engage in the process of teshuva. While this Hebrew word is often translated as “repentance,” its literal meaning is “return;” that is, Judaism calls on us to come back to God and to His path. To me, this means that we human beings start our lives in a state of innocence; that our innermost core was created in a state of natural grace. Transgression of God’s commandments distances us from our true selves, which continue to long for our original condition of closeness with our Creator. Teshuva offers us the opportunity to bring our souls back into harmony with the Divine will, wherever we are before starting the process. This is an intensely optimistic concept – we always possess the capacity to change.
I remember how, when I first began to observe the Jewish commandments and many years afterward, my sense of nearness to God after Yom Kippur was almost physical. It was one of the most pure and beautiful feelings I have ever experienced, as if I were filled with a radiant but gentle light. That feeling sustained me throughout the year, and sometimes – during prayer, when I visited a place of great natural beauty, or occasionally even just while walking here in Jerusalem – I could actually sense that God was near. This feeling (knowledge?) gave me courage and strength with which to face a very challenging life.
But then my daughter was taken – and with her my ability to feel the small spark of Divine presence with which I had been blessed at special times before then. Since then, I’ve had to take Yom Kippur on faith alone. The day is still powerfully significant to me because I know, at least in my mind, that through its observance I may return to God’s path. But so far a sense of God’s presence has not returned to my heart. And I’m not sure it will ever again return; my ability to sense God near me may be just one more loss for me to process.
What God has given me, though, is the courage and the strength for two different kinds of return. One is related to my active, outer self – I’ve begun to beat a path back toward a life that I lost during the last stages of Timmi's illness; indeed, to return to full life after living for a long time in a state of suspension after she died. The other relates to my inner self – I’m well on my way to regaining a capacity for happiness that I was afraid had disappeared forever.
When I look back at my updates of five years ago, I am amazed at how my entire life then revolved around caring for Timmi (and trying to give whatever attention I could to my other children). Is she in pain today? If so, where does it hurt, and does it hurt more or less than it did yesterday? Did she eat today? If so, did she keep it down? Does she have the strength to do anything at all? If so, what kind of activity can we find that might cheer her up? And is there anything we can do together with her as well as with at least some of her siblings? Does she show signs of GVH? Of a return of the cancer? My universe, which had once included a full professional life, social life and family life, had shrunk to the dimensions of a blood test report, a light soup that Timmi’s stomach might be able to tolerate, a video that’s amusing enough to be diverting but doesn’t demand too much concentration.
After Timmi died, my world contracted even further, to include practically nothing but my own grief and that of my family. I sometimes made forays into the “real” world – I joined a book club, did an occasional translation, met friends for lunch – but when I was alone with myself, almost everything outside our family’s bereavement seemed meaningless. When I was with other people, a thick wall separated me from them, a wall so massive that I could practically see it. It was as if I were no longer really living – and it seemed as if the nightmare would go on forever, that I’d never really return to the land of the living. And in that state of suspension, anything beyond a moment or two of happiness at any one time seemed permanently beyond my grasp.
But when I look at my life now, I see that I am on my way back after all. I’m moving in the direction of a meaningful work life, in which I’ll be able to help other families get through their own nightmare of a child’s terrible illness. The wall between me and the rest of humanity, while it still exists, has now been breached in many places by the love of friends who care about me; when I was in New York for my MSW studies this summer, I was even able to renew old relationships and to make new close friendships. And my family has been freed from the frozen depression that sometimes dominated the atmosphere at home following Timmi's death – my children can now speak freely of their sister, her illness, and her death without needing to run and lock themselves in their rooms at the very mention of her name. Her memory is no longer a shadow hovering over us, but rather a presence that we will always carry with us, a source of tears but also of warm memories and laughter. Like the teshuva of the Jewish religious concept, this kind of worldly teshuva is a return to the way we were meant to be when we were created: we were put on this earth to be active agents in bettering it (“repairing the world,” in the Hebrew expression). We were meant to work, to participate in human society and to raise children who may carry on our work after us. I am, thank God, well on my way back to all of these.
And this return to a fuller life in the world has brought about an inner return for me as well. By nature, I have always been quite an optimistic person, believing in the possibility of happiness even when it eluded me at any particular time. Timmi’s death was a severe blow to my optimism; how could happiness ever be possible again after losing her, when every day I am reminded of that loss by her absence? But amazingly – miraculously, perhaps – I’ve found that as I’ve been able to make my way back to an active and meaningful work, social and family life, my connection with the inner core of optimism and capacity for happiness with which I was created has also been restored to me.
Through the process of teshuva, God gives me the opportunity every year to wipe my spiritual slate clean and return to a state of natural grace. I don’t know if my spiritual teshuva will ever be strong or complete enough to enable me to go back to the kind of naïve and innocent sense of God’s presence that I had before Timmi’s cancer irrevocably changed my life and the lives of all my family. But I do know that God has granted me a different but no less precious gift – an ability to change what I do with my time in this world. Even if I’ll never be able to return to the life I led in those days of innocence before I lost my daughter, then God has at least inscribed me in the Book of a true, meaningful, and even potentially happy existence during my lifetime – even after that crushing loss.
Monday, October 03, 2005
Timmi's week was better than the last one, though still far from "good". The best news is that we seem to have found a solution to the problem she was having of constant nausea. Since she started taking the medication, she has been feeling better when awake. In fact, each day this week we have taken her out for a certain period of time: Sunday for a drive, Monday to her aunt's house (for several hours (!) during which she talked, watched TV, read a book to her 4-year-old cousin, etc.), Tuesday to the zoo, yesterday to Tel Aviv and today to the Botanic Garden. Today she actually was more tired than she had been in the last few days, but I hope that's temporary and the positive trend will continue.
We are continuing to reduce the dosage of her narcotic painkiller, and so far this has not resulted in an increase in pain. This means that she sleeps less than she did previously, though she still does sleep most of the time. The main problem is that, except in the late afternoon, if she wakes up for any length of time she wants to do something to pass the time but doesn't have the strength/patience to do anything. I wish I were more creative and could think of things for her to do that she could get into, but all my suggestions are met with "it's too much effort". This is, of course, most frustrating. What we really hope is that in the near future her condition will improve and stabilize to the point where she can again plan regular activity - study for one matriculation exam, even work or volunteer a couple of times a week. This will give her life some structure, as well as free us from the constant challenge of finding things for her to do.
As for the large picture, as I said so far her pain has not come back, which is a good sign. There are not many signs of GVH, but the little there is may indeed be working. God willing.
September 7, 2000
Unlike in my last message, I can't say that Timmi had a better week this week than last. She continues to experience weakness, nausea and vomiting, and often feels she has no strength to do anything. Much of our time and energy is spent trying to convince her to try and do something, empathizing with her when she feels depressed, and taking her places in the hope that she will feel good enough to enjoy the outing. It sometimes works, often doesn't. Very difficult; and who knows how long this will go on. She still has no pain, though, which is a blessing.
My week was somewhat better than last, as with the younger kids back at school I was able to taste "real" life, which I haven't done for a long time. I mediated, volunteered at Na'amat and translated a little. I also exercised three times. As a result, my own mood was for the most part much better. I just hope I'll be able to impart some of it to Timmi.
Shabbat Shalom to all.
September 22, 2000
I didn't write last week because it was much the same as the week before, with various ups and downs. Things started to improve last Friday, when Timmi started to feel somewhat stronger, and on Shabbateven visited with a friend, a thing which she hasn't done in months. The improvement lasted through Monday early afternoon; during the noon hours Daniel and I took her (in her wheelchair, of course) to see the Biblical Landscapes exhibition at the Israel Museum, which she enjoyed greatly, making detailed observations about the various paintings we saw. We were there for two hours, and saw and commented on every painting in the exhibition, and we really felt that things were starting to go in the right direction.
Then, Monday afternoon, Timmi felt a numbness in one of her fingers, which then spread to her entire right side. She was unable to use her hands (or even lift her arm) and couldn't stand on her feet. Worse, she was unable to speak, write or even point to letters to make words – she later told us that no sooner would she think of a word she wanted to say than the word would change in her head to something else. Needless to say, this shook and scared her and us very badly, and it was a huge relief when it went away after a few hours.
The next day, Tuesday, she had an EEG and a CT scan, the results of both of which were normal. Her doctor therefore thinks that what happened may probably be attributed to "neuritis", an inflammation of the nerves that sometimes affects people after a bone marrow transplant. This neuritis, if that is what she has, would also explain some of her other symptoms, such as muscle spasms - from which she suffers regularly, and more and more in recent times - and shaking. The good news is, of course, that it seems that Timora's neurological problems are not a result of a problem in her brain. The bad news is that no one knows exactly what causes the neuritis or how to treat it. Luckily, it does go away in most cases; no one can predict when.
Besides her neurological symptoms, Timora has been feeling steadily worse since Monday evening - weak, nauseated, stomach pains, vomiting, headaches, pains in her thighs (these last may be due to muscle atrophy), still can't eat or drink. She had a gastroendoscopy yesterday (Wednesday) in an attempt to understand her stomach problems. Nothing was seen in the endoscopy itself, but the doctor took biopsies and cultures from the stomach lining and we should have the results early next week.
Her liver functions are also getting steadily worse, and her white blood cell count continues to rise. Her doctor would like to do a biopsy of her liver to see whether the problems there (and perhaps at least some of her other problems as well) are due to GVH. The difficulty is that because of the damage to her liver, her blood clotting functions are also abnormal, and under those conditions it is impossible to do a biopsy. Catch 22.
She is again very depressed at her inability to do anything because of her physical condition, and as always frustrated by the ephemeral nature of all progress that she seems to make. It is very hard for us to do anything for her, which is heartbreaking for us. But we still hope that things will improve, if we figure out the causes of her present condition.
We are starting to make arrangements to have someone come in to be with her two mornings a week, so that we will both be free those days to work or do other things that need to get done; Kupat Holim (our HMO) will cover the cost. I just hope we find someone compatible with Timmi - she's not so easy to please as far as people outside the family are concerned. But having started getting out into the outside world again, I see how crucial working is to my morale; I am now mediating two cases and this has had a very positive effect on me. Work and exercise - those are the things that help me most at this point.
Shabbat Shalom to all of you, and if I don't write before then, Shana Tova.
October 1, 2005
I’m starting this post on Saturday evening, after Shabbat has gone out. My mood tends to get blue as the Sabbath draws to a close. Not surprisingly, many observant Jews feel sad as this time approaches. It’s never easy to leave behind the peace and pleasures of our weekly day of physical and spiritual rest, and face our re-entry into the rather frantic world of work and day-to-day obligations. For me, this feeling has been intensified over the past several years by the fear that I won’t be able to do what life demands of me. Worse, as I prepare to face the week, I’m haunted by the question whether there’s anything that’s truly worth doing. But my answer is always yes. Meaningful activity – being a mother to my children and a wife to Don, interacting with the others in my life and, now, preparing to enter a profession in which I’ll be able to fulfill the Jewish commandment to “repair the world” – not only keeps me going, but makes life worth living. I thank God every day for giving me meaningful work to do, and the strength with which to do it.
Five years ago, Timmi no longer belonged to any framework of regular activity. Her involvement with her drama group had ended with the group’s grand production (see “The High Point of a Life,” May 2005). She had finished taking those matriculation exams that she could manage for that academic year. Her class had graduated and the girls were starting their military or alternative national service. She was out of the hospital, still feeling awful from the treatment she’s been given, and with no goal to work toward that could distract her from her body’s slow deterioration. And so she entered a vicious downward spiral: as she weakened, she was able to engage in fewer activities, and as her days became emptier, she became still weaker, which meant that she had even less strength to do the things we tried to find to help her fill her time. From time to time, she rallied, and did as much as her body would allow her to do. But as time went by, those times became fewer and farther between.
Timmi had always been extremely active, involved in many areas all at once – music, writing, reading, drawing, joking, acting, interacting with her family and her peers, and so much more – and was always excited about learning new things. Even when she was hospitalized or home-bound due to her leukemia or the treatment for it, she kept as busy as her physical strength allowed. In the hospital we'd rent her a television (a novelty for her, as we've never had a TV at home), for when she was unable to read or talk with whoever was staying with her. When I was with her there, we'd watch together - and Timmi would always have something to say about the cultural and moral values reflected in whatever we were watching. She transformed even the silliest shows into learning opportunities. For example, she used South American telenovellas to start to teach herself Spanish, keeping by her bed a vocabulary list to which she would add new words every time she watched, and would occasionally speak to me in simple (sometimes broken) Spanish. When she was up to it, she played all kinds of games - puppet games with her older sisters, or dress-up, when she'd take a scarf, drape it over her hair and tie it under her chin like the mothers of some of the Arab children in the ward. (This last game reminded me of how when she was little she used to exchange shoes with her friends, and they'd pretend to be each other.) During her second illness, she not only did whatever schoolwork she could, but also started driving lessons and worked a few hours a week for the Israel office of the Anti-Defamation League.
But now, my heart broke slowly as she began to lose interest in the world around her, even in the things she had loved most passionately until then. When we tried playing her favorite records she asked us to stop, saying the noise disturbed her. She could no longer write stories or poetry, of course, nor could she even concentrate on movies or television. We bought her a new kitten, knowing how much she loved animals, and remembering how she used to spend hours playing with our first cat, Snow, who used to seek her out in order to sleep on her lap, or with her in bed. (She used to hold long conversations with the cat: “Snow,” she would croon. “Meow,” Snow would answer. “Snow,” she would repeat; “Meow,” Snow would again reply. The dialogue would go on like that: “Snow” “Meow;” “Snow,” “Meow;” until it would end with a long “Snooooooow,” and a final “Meooooooow.”) But even the new kitten failed to keep Timmi’s attention for more than a minute or two, and soon after it arrived, Timmi entered the hospital for the last time.
I’ve mentioned more than once that after Timmi died I went through a long period in which I also had no strength to do any but the most urgent tasks, and nothing seemed worth the effort. Like Timmi, I'd been a "doer" to the point of hyperactivity. I had my first baby during my second year in law school, my second a week after graduating, my third right after finishing a clerkship on the Federal Court of Appeals in San Fransisco - and moved to Israel a month later. Right after learning Hebrew, I started courses at Hebrew University toward a Masters degree in Jewish law (which I never completed because financial pressures required that I enter the work force). From there I went on to a very demanding professional life, having four more children along the way. So during the long stretch of lethargy I experienced after Timmi died, it felt as if I were not really living, or not really living as myself.
Thank God, I’ve regained much of my strength, and started on a very meaningful path in anticipation of a new career as a social worker. But I still tend to worry abount my energy level. While I was in New York for my studies this summer, I felt very anxious at first – would I really have the energy to complete the work for six courses in seven weeks? True, back in the old days I’d worked at a full-time-plus career while raising (together with Don) seven children. But those times were long gone; before leaving for New York I’d been barely able to work five hours a day at my job, and often had to leave non-urgent household business unattended to. How would I handle six hours a day of classes plus homework and two papers every week?
As the summer went by and I got into the routine, though, I discovered that I really was capable of doing what was required of me - and the very fact of being actively engaged in such a maningful and intensive project energized me. In a sense, I reversed the cycle that had held Timmi in its grip the last few months of her life: the more I did, the more energy I had, and the more strength I had the more I did. In fact, I've returned from New York with a sense that my life has finally become unstuck, and feeling – for the first time in many years – truly optimistic about the future.
Still, there are times when the old lethargy and sense of hopelessness take over. At those times, I get a glimpse of how Timmi must have felt during those last months: without meaningful activity, life itself feels meaningless. How incredibly difficult this must have been for Timmi, who had always been full of boundless energy, enthusiasm and plans for the future, and who had sought meaning in all aspects of her life and her world! The thought is really too painful for me to bear for long.
When I begin to feel weighed down by the memory of how Timmi’s life force slowly drained away, or by my own lack of strength or sense of meaninglessness, I pull myself out of it by finding something significant – however small – to do. This past Shabbat, for example, the blue feeling started to come over me as I was sitting with Shari, sharing the traditional Sabbath “third meal” in the late afternoon. Suddenly Shari said, “Let’s sing!” What a great idea, I said – and we agreed that it’s nearly always a great idea to sing. So we sang together the two songs with which Jews have traditionally bade the Sabbath farewell – Psalm 23 (The Lord is my Shepherd), and “Yedid Nefesh” (Friend of My Soul), a kind of love song to God. By the time we finished, the blues had left me, and I once again felt ready to use the strength I’d gathered over Shabbat to go out into the world and do what I must as a believing Jew, a mother, a wife, a student, and a friend.
I’m finishing this post just before the beginning of Rosh HaShana, the Jewish New Year. At this time of reflection and renewal, my wish is that God will give all of us the strength and the wisdom to fill our own lives with meaning, and help us to do the same for those around us.
Shana Tova – I wish all my readers a happy, healthy and sweet year.