Saturday, March 26, 2005

Helplessness, Faith and Courage

March 12, 2000
A great deal has happened since I sent my last update, most of it not so great.

Timmi was hospitalized last Shabbat morning with a fever, and has been in the hospital since, except for "leave" this Shabbat (she went back immediately Motzei Shabbat*). She has, it turns out, quite a serious bacterial infection in her blood. In addition, for quite some time she has been having stomach pain, nausea or vomiting when she eats or drinks; for the past week or more she has been able to keep down only very small amounts of neutral food, such as bread. A gastroentoscopy that was performed on Thursday showed some kind of inflammation in two places in her stomach, and biopsies were taken to determine if they are bacterial, viral or possibly GVH-related. And speaking of GVH, it is unclear whether she has it any more, as the rash she developed after taking the interferon has almost disappeared. This means that the interferon treatment was a failure; the next step, when she is well enough, will be to start giving her new T-cells from Ashira in an attempt to reignite the GVH. So the inflammation that we wanted has gone away, and now she is suffering from two unwanted inflammations.

Counterintuitively, Timmi's mood took a serious turn for the worse when she came home for Shabbat, and she spent most of Shabbat angry or depressed. It is very hard for her to come back and see life going on more or less normally (while life in our house is certainly not normal right now, the other children do have lives that they lead), when it is so hard for her to participate.

Paradoxically, though, during the past two weeks I personally have been coping quite a bit better than had been the case before that. I have found that, at least in our present situation, the most helpful thing that I can do for myself, as well as for Timmi, is to recognize my own helplessness in the face of these terrible things, and accept the limitations on my ability to change much. What I can do, right now, is be with Timmi, let her know I'm there and give her the message that I know where she is, and love her. I do this most effectively, it turns out, when I recognize that that is really all I can do at that particular moment. It is not easy, as a parent, to recognize and accept these limits, especially when it comes to Timmi's emotional state. Rejecting the limits, though, not only makes me feel guilty for not doing the "more" or the "better" that "must" be out there to do, but it also makes me less helpful to Timmi. So I have been working very hard on this, as difficult as it is.

Shavua Tov* to all.


*Saturday night.
**A good week.

March 23, 2005
I just got back from the public reading in synagogue of Megillat Esther (the Book of Esther) that is a central part of Jews’ observance of Purim (see my last post). In many respects, the Purim story is one of the interrelationship between the limitations that we humans face in determining our own fate, on the one hand, and faith and courage – the two means that we do have in our struggle against the despair that can result from that helplessness, on the other.

In the Purim story, the Jews of the ancient Persian Empire are faced with annihilation at the hands of Haman, King Ahasuerus’s favored adviser, who formulates his genocidal plan in response to the anger and hatred that he feels toward one Jew – Mordechai, who refuses to bow down to him. The king, an absolute monarch who makes decisions according to how his fancy strikes him at any particular moment, sees nothing amiss or even unusual, it seems, in ordering the destruction of an entire people on the basis of one man’s counsel (with a large bribe thrown into the bargain). Haman decides which day the massacre is to take place by casting lots – Purim – and the lot falls on the 14th day of Adar, the last month in the Jewish calendar.

In such an arbitrary world, it’s easy to give in to despair. And indeed, that is just what the Jews do upon hearing of the king’s decree – mourn their fate in advance, donning sackcloth and sitting in ashes. This is Mordechai’s first response as well – he even sits in mourning at the palace gate, where sackcloth and ashes are forbidden. But as a man of faith, Mordechai does not allow despair to rule him. He sends a message to his cousin and adopted daughter, Ahasuerus's wife Queen Esther, telling her of Haman’s plan and Ahasuerus’s acquiescence, and asks that she intervene with the king. At first, Esther too is struck by a sense of futility; by coming to the king uninvited, she runs the risk of being executed. But she agrees, asking only that the Jews fast for her for three days before she enters the king’s chamber. Thanks to Mordechai’s and Esther’s faith and courage, the story ends happily; Esther’s mission is successful – the Jews are spared, and Haman and his cohorts receive their just punishment.

Sometimes our world seems as if it’s ruled by a king like Ahasuerus, with our fate determined by chance rather than by our own acts. We’d love to think that we have control over our lives – that our behavior will determine the course our lives will take, for good and for bad. And we do have a certain amount of control. “What goes around comes around” is not a completely empty slogan. Like Haman, evil people are sometimes undone by their own character; witness the ultimate fates of Hitler, Stalin, Pol Pot and other monsters like them. But for each such example there is a counter-example of a despot who caused untold harm to great numbers of people, but died peacefully of old age. In our private lives, too, each of us knows people who seem to get what they deserve – and others who definitely do not. Not all stories end like the Purim story, with evil punished and innocence rewarded.

My father once described the arbitrary nature of the world around him, as he saw it, in a poem:

Some angry angel
Bleared by Bach and still unfed
Jumped out of bed
Pulled on a sock and,
Glancing downwards,
Threw a rock
Which hit an earthbound peacock’s head.
The peacock fell.
The peacock’s yell,
Outraged by such treason,
Cried out to know why it
Out of millions
Should be hit
And instantly invented a reason.

How are we to understand the capriciousness of fortune? There are those who insist, as a theological certainly and regardless of a great deal of evidence to the contrary, that the pattern of each person’s life is determined in accordance with the laws of reward and punishment. The reward/punishment may be personal (the person herself deserves it), familial (the person is treated according to her parents’ or ancestors’ good or evil deeds) or national (what befalls a people depends on its members’ national morality). If things seem otherwise, it’s only because we can’t understand God’s plan. The problem with this approach is that it can lead to a smug disregard for the suffering of others who, after all, “get only what’s coming to them.” There are others, like my father, who accept only the evidence of their eyes and see life and destiny as completely arbitrary. This belief, though, can plunge a morally principled person into the depths of despair, as there seems to be no point in even trying to do the right thing.

Rasha v’tov lo (an evil person who prospers) and Tzaddik v’rah lo (a righteous person who suffers) is one of the oldest and most difficult of philosophical and theological questions, and I certainly cannot claim to have resolved it. What I do know is that as a person of faith, I refuse to accept either extreme position. If I believed that Timmi suffered and died because of her own or others’ transgressions, I would not be able to serve such a vengeful God. My faith would not survive such knowledge. But neither can I see her suffering and death as arbitrary and meaningless; this too would be devastating to me. And I’ve experienced too much of God’s goodness to believe that the universe just happened – as some kind of cosmic mistake – or that He created it and then left us entirely on our own, to fend for ourselves.

So I return to my question. In a world in which terrible things sometimes befall the innocent, and not all stories end like Esther’s, Mordechai’s and Haman’s, how do we face our vulnerability without either denying reality or letting it overwhelm us with despair? I believe that the answer comes back to faith and courage. Mordechai and Esther had faith in the possibility that their lives – and those of their people – were subject to a force beyond random events, to more than the momentary whims of a king. They had the courage to risk their lives on the basis of this faith – Mordechai as he continued to defy Haman and sit at the palace gates, and Esther as she entered the king’s inner chamber without having been summoned.

Esther and Mordechai succeeded in reversing the tide of capricious fortune that threatened to engulf the Jewish people of their time. But I believe that those two heroes’ faith and courage may serve as an example to us even when our story doesn’t end happily. We can call on our courage to help us face the frightening reality that we live in a world in which innocents can and do suffer, and in which even children can and do die. And faith can help us go on living, even in full awareness of our helplessness, without becoming either despondent or cynical. If life is to have meaning, I believe, we must reject both attitudes. Despondency may lead a person to feel – and act – as if there’s no point in doing anything, because all may be undone in a chance moment. Cynicism may cause a person to feel, and act, as if there’s no point in trying to live morally, because in a world without reward or punishment we might as well do whatever we please – even if it causes arbitrary and undeserved harm to others, thus perpetuating the cycle.

May all our stories end happily – and at those times when they don’t, may God bless us all with the faith and courage to continue living fearlessly and morally, even as we face the limits of our control over our own destinies.

Wednesday, March 16, 2005

Everything and Its Opposite

February 28, 2000
Timmi had a difficult week last week, with the side effects of the medicine (interferon) she was taking to try to induce GVH making her feel physically weak, with frequent fever. She was also quite discouraged much of the time. On Thursday she had a scan, the results of which were inconclusive - it showed areas where there was "something" but it was difficult to tell if what showed up on the scan were tumors, results of her osteoporosis or the beginnings of GVH. My gut feeling is that it is all of the above. At any rate, we were encouraged by the possibility that the GVH was finally starting to appear, and Timmi's mood improved a bit with that news. It also seems that her pain level has been reduced, which could be attributed to the increased effectiveness of her anti-pain medication, but also might be seen as resulting from the GVH (i.e., her new immune system's functioning) attacking and shrinking the tumors that were causing the pain.

Today, she woke up with an intense rash all over her body. This, finally, is a clear sign of serious GVH, so it seems the interferon has indeed been working. The downside is that the rash is very itchy; we hope to be able to control the itching with a hydrocortisone cream, but if the GVH gets too intense she will have to be hospitalized in order to receive steroids intravenously. So, as we expected, the good news of the start of GVH comes with a great deal of anxiety over what and how much Timmi will suffer from the "cure" for her cancer, and how she will deal with the constant discomfort.

My own emotional state has been quite variable, with days that I cope and days that I feel as if I have lost the ability to enjoy myself, and days when just coping seems a Herculean task. I am very grateful for Don, who is in a somewhat better place than I am right now, and for the love I feel from my friends. But sometimes I get overwhelmed. Today, though, I'm functioning quite well, so I'm grateful for that and hope it will last. Also, Purim is coming, which means the best days of the year for me - Purim Spiel rehearsals!

Shavua Tov to all of you.


March 16, 2005
This past Shabbat was the first day of Adar II,* the month in which we Jews celebrate Purim. This holiday commemorates the deliverance of the Jews of the Persian empire from the genocidal destruction planned by the Persian king’s evil adviser, Haman, through the faith and courage of Queen Esther and her brother Mordechai. The story is told in the Book of Esther, which describes how Jews have ever since celebrated Purim, “the days on which the Jews were delivered from their enemies,” and Adar as “the month that was turned for them from sorrow into gladness and from mourning into a holiday.”

We celebrate Purim with a festive meal, gifts of food, charity to the poor, and generally by having a rowdy good time. But what most distinguishes Purim from other holidays, whether Jewish or other, is its focus on turning things around. Many Israeli schools, for example, celebrate the beginning of Adar as “Opposite Day” – in commemoration of the reversal of the Jews’ fortune, roles are reversed, with students teaching and teachers acting like kids. In just about every school in the country, children and teachers alike dress up in costumes – another way of being what you aren’t and, in a sense, of reversing reality. (I recently learned that in Abu Ghosh, an Arab town next to Jerusalem, even the Muslims and the Christians dress up and fool around!) One of my favorite parts of Purim is that every year I participate in our synagogue’s “Purim Spiel,” a traditional comic play or show in which we make fun of anything and everything, especially ourselves.

One of Purim’s profound meanings, for me, is its recognition that everything in this world contains the seed of its opposite. Just as the Persian Empire’s Jews’ disaster contained the germs of their deliverance – for in the end it was Haman’s own evil character that proved to be his undoing – so every situation holds within itself the reverse possibility. Even life, by definition, contains the certainty of eventual death; the main thing all living creatures have in common is that they are bound to die. Similarly, each human being is made up of many conflicting selves, and Purim is a time to explore these selves and bring them out into the light, if only for one day. (I, for example, love getting in touch with my “inner vamp” as part of my Purim performance, even though the other days of the year I dress and behave with the modesty that the Jewish religion requires.)

But this also means that good times, good situations and even good people may reverse course, and their darker aspects may emerge and even dominate. For me, the most striking occurence illustrating how great good and great evil may dwell side by side in the same person took place about ten years ago, on Purim. A doctor named Baruch Goldstein, who was known for his kindness, charity, and extraordinary efforts to help other Jews, took his military weapon, entered a mosque in the middle of prayers, and massacred 29 worshippers. Since then, Purim has had a bittersweet flavor for me.

In some ways, Timmi contained more contradictions than most. When she was a small girl, we used to call her “the little girl with the little curl right in the middle of her forehead” (because, of course, besides having lovely curly hair, “when she was good she was very, very good, but when she was bad she was horrid”). It was very easy for her to move from a bright, happy mood to anger or sadness. (Luckily for us, most of the time she sparkled with fun.) After she became ill, this natural tendency, which was harmless enough when she was small, intensified. At times, she would fall into black despair, and lash out at those with whom she shared the deepest love.

Timmi had always treasured her role as big sister (she was our fourth out of seven children), and enjoyed teaching her younger sisters and brother games, making things with them, and generally helping them in all kinds of ways. But during her illness there were many times when her pain or despair overcame her, and she directed her bitterness at Elaine, Aimee and Danny. This was heartbreaking for me and Don – there were times when Timmi seemed almost unrecognizable as herself. (I’ve been told that cancer, and certain treatments for cancer, sometimes do this to people.) These outbursts had a deep and lasting effect on the younger children, and many times Don and I had to explain to them that although it sometimes seemed as if their sister had turned into a stranger, the true Timmi was still there, still loved them, and would come back out again once her pain, or desperate mood, had passed.

Even Timmi’s physical being expressed these contradictions. She was an extremely active child, graceful and strong, and spent much of her time running, skipping, and dancing. And yet, from the age of four or so, that healthy, beautiful body contained hundreds, then thousands, then millions of malignant cells that took eight years to make themselves known, ultimately filling her bones and replacing her life-giving blood cells with the seeds of an early death.

But just as life always contains the germ of death, so death can sometimes give deeper meaning to life. Timmi’s death is without a doubt the worst thing that has ever happened to me, to Don and to our children. But even the intense suffering that we went through – and continue to experience at times – has created and nurtured aspects of ourselves that might otherwise never have been expressed as strongly or in the same way. Empathy has always been one of our family’s highest values, but now we possess experience and language that enable us to listen deeply to others’ suffering, to help them feel that they’re not alone, even sometimes to lighten their burden. For example, one of Aimee’s friends’ mother has been stricken with breast cancer, and Aimee has been able to listen and speak to her friend with a maturity far beyond her fifteen years. I am changing my career in the hope of helping strangers in that way. And I think that much of my other children’s passion for social activism also stems in part from the intense sensitivity to other people’s suffering that grew in them in response to Timmi’s illness and death.

So as Purim approaches, my awareness grows of the deep complexity of our lives. This world contains everything and its opposite, and each of its aspects bears within it a multitude of possibilities – as do we. And, as human beings created in God's image, we have the capacity to choose which parts of ourselves to develop in response to the extreme suffering – our own and other people’s – that is sometimes a tragic part of life. I pray us that God will grant us all the strength to draw on our own sorrow to ease the pain of others, and to learn from our own mourning to help other mourners find within themselves that very same strength.

*The Jewish calendar, which is strictly lunar, contains a second month of Adar every few years, to keep it in synch with the solar calendar.

Monday, March 07, 2005

The Bare Necessities: Work

February 17, 2000
During the last week, no signs of GVH appeared, and Timmi's pains got worse. Next week she will have a scan to see if the pains she is having are in fact from tumors, but because they are strongest in the places where she has historically had the largest tumors, we are assuming that that's what they are. Therefore, she has started injecting herself every day with interferon, which we hope will stimulate a GVH and attendant GVL (graft versus host and graft versus leukemia) effect. The results of a genetic test have indicated that her present immune system is indeed grafted from Shari’s, and that improves the possibility that the interferon will work. We certainly hope so. If there is no GVH in the next two weeks, she will start getting extra T-cells from Shari in a further attempt to induce the syndrome.

Timmi's mood markedly improved this past week, as well as my own ability to function. A psychologist once told me that in these situations people sometimes need "collapse days". I had a few of those over the last couple of weeks, but now feel like I'm coping again. My life is now slow and stressed - a few years ago, I wouldn't have believed that such a thing exists. I hope to be getting out for more professional work in the near future, and am again making sure to get enough exercise. Those are the things that most help me, so I hope to stay in the coping mode for a while at least. (I also never dreamed that I would ever see work as a kind of vacation!)

Shabbat Shalom to all.


March 3, 2005
Several days ago I took an exciting but scary decision. I decided definitely to go to New York this summer to start the MSW program to which I’ve been accepted, even though I still don’t know how I’ll finance the program past the first year. (I wrote about my hope to attend this program in “Plans,” October 2004, and “Waiting,” January 2005.) I made my decision thanks to the feedback and advice of literally everyone I spoke to about my dilemma whether to start the program without knowing I could finish it. Every single person around me – my friends, Don, my children – has told me that I should just go for it, and that the momentum of starting would carry me through. As Shari put it, if this is what I’m meant to do, God will make sure I manage to do it, one way or another. Although it’s hard to escape my fear that things won’t happen the way I hope they will, the chance of finally working at a profession with which I identify completely is too important to me to give up.

Since the age of three and a half, when I started nursery school, I was always part of a framework of either study (which is, after all, our work when we’re young) or a profession, or both. Having children didn’t change that. I had Lisa in the middle of my second year of law school, and was completely determined that parenting wouldn't come at the expense of work, and vice versa. I would do my homework and study for tests while nursing Lisa. Once, when Don was unavailable and we had no other childcare arrangement, I took her with me to class. I sat her on my desk, next to the door in case she needed to be taken out, and gave her a teddy bear to play with. (About half the students who came in past us said something like, “I wish I also had a teddy bear to play with!") This mix of mothering and studying led to some absurd and comic scenes: my six-hour Business Associations exam was the first time I’d gone for more than three hours without nursing Lisa, so there I sat, writing frantically about partnerships and corporations, while my body kept insisting in no uncertain terms that it was time to feed my baby. I left the exam soaked from my neck to my knees!

I went on living an intensely high-energy life, combining motherhood with work (I include study in my definition of work) outside my home; I gave birth to Sheila a week after finishing law school, and to Shari right after finishing my clerkship on the federal court of appeals. When we came to Israel a month later, I immediately entered an ”Ulpan” (a Hebrew language immersion program), after which I enrolled in a Masters program in Jewish law at Hebrew University; Timmi was born when I was one year into the Masters program. The next year, I began work as an intern at a law firm, and Elaine was born just as I completed the mandatory year and a half of internship. I started my career as a licensed attorney with five children up to the age of nine!
After Aimee and then Danny were born, I moved from my high-pressure job at a private commercial law firm to a less stressful job with the government, but due to my relatively high position (as deputy legal adviser at a government ministry) I still worked full-time-plus.

All along, Don and I shared our domestic duties according to practical considerations – whoever was free did whatever was needed at the moment. And when Timmi first became ill, I continued working, because it was natural for Don and me to split between us what needed to be done to take care of her and of the other children.

Timmi's relapse was diagnosed shortly after I’d left the legal profession to study mediation. Under those circumstances, I couldn’t get a new regular job. I wanted to be more available for Timmi and my other children this time around, as a relapse is much scarier than a first-time cancer. Also, it was clear that even if I wanted a job outside my home, no one would hire the mother of a child with such a demanding illness. So I took occasional free-lance mediation work, mostly for divorcing couples. For the first time since I was three and a half, I found myself without a regular framework for work or study outside my home. It was a strange feeling, but I was so busy with Timmi and the other kids that I didn’t really have time to notice it much.

When Timmi died, the vacuum she left behind was harder to deal with than the frantic activity of even the most pressured periods in my life before then. All the energy that I managed to find within myself, first when I was parenting seven children while working at a demanding profession, then as a mother dealing with Timmi’s illness and its fallout for the rest of the family – all that energy just dried up. Almost everything I needed to do seemed totally overwhelming; at the same time, I didn’t know what to do with myself during the long, empty hours of the day. It was almost two years before I was able to return to a regular job, and a part-time one at that. (To this day, I haven't felt able to work a full day, and often when I return from work I don't seem to have the strength to do what needs to be done at home.)

Almost miraculously, though, whenever I've been involved in a mediation, I've discovered that elusive energy within myself. I find it fascinating and exciting to be allowed into the emotional lives of my clients and to help them solve their conflicts. Even before I was able to return to work at a regular job, no matter how hard things were at home (both during Timmi’s second illness and after her death) I was always able to leave my troubles outside the door and concetrate on the people sitting in the mediation room with me, and on my work with them. For the first time in my professional life, I was totally absorbed in work about which I felt passionate, and that passion energized me even when I had the strength for little other than what I barely needed to do to keep my family going.

It was a small and simple step from mediating divorces to the desire to work with people to help keep their families whole. And so I began dreaming of retraining as a social worker and becoming a family therapist, finally applying to the MSW program that I'll start, God willing, this coming June. But the program I’m entering is very demanding. It will mean being away from my family for three summers in a row, each time squeezing a full semester’s course load into six weeks or so, with all of a semester’s homework to do and papers to write. It worries me - what if, however much I want to do this, I really don't have the energy to handle such an intensive schedule?

But I know what Timmi would have said. She would have told me to take the risk and go for it, just as she insisted on pushing herself to her own limits despite her illness. She would have reminded me that perhaps the only way to find some meaning in what we all went through together is for each of us to use what our experience taught us to try and ease other people's suffering, where we can. Elaine does this by working with disadvantaged Jewish and Arab children, and by helping Israeli and Palestinian young women to work together toward a vision of peaceful coexistence. Lisa does this through her work at the Rape Crisis Center. Aimee listens empathetically to her friends whose families are in crisis, and is sometimes even able to help them through, one day at a time. Shari and Sheila hope to make the world a better place through their studies and, ultimately, their work – Shari in film, and Sheila in Middle Eastern studies and communications. Even Danny contributed to a recent all-nighter at his school by giving a Reiki energy healing workshop to the other eighth-graders.

In many ways, our work – whether as students, professionals, or parents – gives our lives meaning. And the work that I need to do, I believe ever more strongly as time passes, is to transform my years as the mother of a family in crisis into something that will enable me to help other families in a similar situation. My plan to study may be scary, but I’ve been through scarier things. I may feel unequal to the demands of such a concentrated program, but I’ve done more intensive things. If this is what I am meant to be doing – and I truly believe it is – then I simply need to start doing it. I can only trust that God will provide me with the strength I need to make it work.