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.