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.
**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,
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.