Ups and Downs

September 10, 1999
Well, Timmi has finally had her PET Scan and I'm happy to say that the results show a significant if not total remission. The doctor explained that a total remission was not to be expected because she got a fairly short course of chemo which was interrupted in the middle. The fact is that I had expected the scan to show at least some remission, because over the past several days Timmi had reduced her pain medication by half without any increase in pain, which is both good news in and of itself and is a sign that the size of the tumors has been reduced. The practical ramifications are that Timmi will get another identical course of chemo before the planned bone marrow transplant; the timing will depend on blood counts and probably Chagim.*

This week was an up-and-down one. Timmi started school feeing upbeat and energetic, but on Monday started feeling lousy. Wednesday she was unable to stay at school and came home quite early in the day. Today, however, she started feeling better again, so we hope that will last through Rosh HaShana.**

I wish the community and all of the Jewish people, as well as all the people of the world, a good and sweet year - at least a better year than the past one has been.

With much love,
S.

*Jewish High Holidays
**Jewish New Year

September 10, 2004
I am naturally the kind of person who has very strong ups and downs. In my earlier life, when I was happy I was ecstatic, and when I was unhappy, it seemed that the world had come to an end. I think that in my natural state, I approach the bipolar end of normal. But for years now I’ve spent a lot of my time in the emotional flatlands. I never thought I would, but now I miss the fluctuations that used to frustrate me so much when they seemed at times to control my life. Today, I’m actually grateful for my own tears, when they come.

The first time a boy said “I love you” to me, when my first daughter Lisa was born – at times like these, I felt as if I could barely contain my joy. When love was unrequited, when I was having serious problems with Don or one of the girls – at times like those, the depth of my sadness threatened to sweep me away. But in truly terrible times, as when my father died when I was a teenager, my tendency has always been to turn off, to retreat into a kind of fog where I feel nothing strongly in either direction. Above all, not to cry.

When we were first told that Timmi had cancer, after several months of failed diagnoses, I consciously felt very little. My mind was taken up by whom I should call, what arrangements I would need to make. When the next morning I left home with Don for the hospital in order to tell Timmi, I was extremely calm – got up, got dressed, got the other kids out to school, and left the apartment with my eyes still dry. The only sign that something was wrong was that I forgot to take my purse, something that “never” happens when I walk out the door. We told her, she cried a bit and then said that she had no doubt whatsoever that she was going to get well. I had no doubts one way or the other – I was just empty.

During the six years or so of Timmi’s illness, I learned to temper my emotions as a way of life, not just at overwhelmingly hard times. There were so many uncertainties. When she went into complete remission, when she survived the first bone marrow transplant, I was glad, of course, but couldn’t really rejoice – something terrible could still happen. I did allow myself to feel true relief and joy when she finished the automatic course of anti-rejection treatment after her first transplant, and it seemed that she was on her way to a normal life. She finished the treatment right before Simchat Torah, when Jews throughout the world finish the weekly reading of the Torah and start again with the first verses of Genesis, describing God’s creation of the world. Timmi read the Genesis portion for the women, and then recited “Birkat HaGomel,” the blessing on having survived a dangerous experience. I felt as if the world had been recreated for her and for us, and I thought my heart would burst. But that was the last time for many years that I felt intense joy.

By the time Timmi was unconscious and in intensive care, and we were told that there was nothing left to do but wait, I was running totally on automatic pilot. Every day I would come to see her and sing or talk to her, and I did what I could to take care of my other children. But my inner world was flat. One time a nurse asked me how I felt about the decision to let nature take its course. I didn’t know how to answer her, and mumbled something about her being out of pain.

After Timmi died, I stayed in my self-made desert, crying only sporadically and never for more than a few seconds at a time. I spent many months running away from my feelings and concentrating only on doing what I had to do. But there was only so far I could run, and I paid a heavy price for my flight. I became less and less able to function, and eventually reached the point where I was doing only the minimum to keep things going. My pain was always just underneath the surface, little by little chipping away at me. If I didn’t face it, I was going to turn into an automaton.

I went into therapy and finally began to really cry. And when I began to be able to feel the depth of my sadness, I also regained a bit of my capacity for joy. To this day, I still don’t cry as much as I need to (can you really cry “enough” for a lost child?). But I have cried enough now so that I am again able, albeit rarely, to feel pure happiness. Those rare moments of joy have come at momentous times in my children’s lives, as at Aimee’s Bat Mitzva last year and David’s Bar Mitzva this past July.

So I now welcome being able to feel strongly, even when it means dipping into the deep well of pain I carry within me since losing my daughter. In synagogue on holidays, I look forward to the “Yizkor” prayer remembering the dead, because I am most likely at those times to cry hard and long. It’s as if my tears are watering my parched heart. Without those tears, I know now, I’ll never again know real joy.