October 15, 1999
Well, Timmi got out of the hospital last night after completing five days of chemo plus a spinal injection and bone marrow biopsy. The treatment is a relatively hard one, and she felt quite bad sometimes, although emotionally there were ups as well as downs. The side effects will continue for a while, and we expect that toward the end of next week or so she will return to the hospital with a fever. But there is good news - apparently we will be able to go to Paris before the transplant, after all (medical issues allowing, of course). So I hope to take her in early-mid November, for a week to ten days.
The week was, as all hospital weeks are, draining for me, and I'm glad she's out for now. There's nothing else new, so I'll see most (or at least some) of you in Shul.* Shabbat Shalom.
*Shul – Yiddish for synagogue
October 21, 2004
Our adult daughter Sheila was recently diagnosed as suffering from a chronic and painful inflammatory disease. My first reaction, as well as Don’s (after our concern for her, of course), has been “Can I really do this again?” Can I really stand helplessly by once again as my child suffers intense pain, with no clear end in sight? How will I be able to be there for her as she tries one treatment after another, with no guarantee that any will work – or when a treatment seems to work but its side effects are so overwhelming that it’s not clear the treatment is an improvement over the disease? Am I really strong enough for all this, or did our six-year journey with Timmi drain me completely of the kind of strength I’m going to need to support Sheila?
The answer I find when I look inside myself, incredibly enough, is that it seems that I do have that strength. And even more amazingly, it seems that its source is that very journey with Timmi.
During Timmi’s first round of cancer, I found it very hard to cope. My empathy for her often overwhelmed me, and I was sometimes unable to keep my perspective and help her see past her pain, anger, depression and other distress. She would sometimes refuse to take her medications, to allow the nurses to take blood, or otherwise to cooperate in her treatment. Sometimes, when she screamed at me that it wasn’t fair that she had to go through all this, I agreed with her in my heart so thoroughly that it paralyzed me. I’m ashamed to admit that there were times I identified so intensely with Timmi’s suffering that the job of calmly and assertively getting her to do what she had to do fell to Don or to the hospital staff. Eventually, a certain division of labor developed, with Don spending more time in the hospital and dealing with Timmi’s physical care at home, and me doing most the caring for the other six children’s physical and emotional needs.
This situation had to change during Timmi’s first bone marrow transplant and its aftermath. The treatments were so intensive, and the results of making a mistake so potentially dangerous, that I was forced to be as involved in Timmi’s physical care as Don was. We were both absolutely essential; I couldn’t allow myself the luxury of allowing my sympathy to sweep me away, or of allowing her suffering to incapacitate me. So I changed – grew up a bit more, in a way – and discovered that it’s possible for me to empathize deeply without drowning in sympathy.
When Timmi’s cancer returned three years later, I was in a different place entirely. I'd left my job as a lawyer to retrain as a mediator three months earlier, and I decided not to look for a regular job but to dedicate my time to Timmi’s and my other children’s care. (Not that anyone would have hired me knowing that I had a child with cancer, but that’s a different story.) I found myself capable of looking beyond Timmi's immediate suffering to the larger picture, and to concentrate on medium-term strategies to keep her spirits up. I helped her attend school whenever she possibly could, even when she feeling bad, because when she had something outside her body to occupy her, her discomfort was more bearable – and she could even enjoy life. We even planned and took a trip to Paris together!
Paradoxically, the less I identified with Timmi, the closer I became with her. Sometimes we would even have the same thought at the same moment. Once, as I was driving her to the hospital, a love song came on the radio. Just as the exact same idea popped into my head, she said (in just about the same words that I had said to myself), “Isn’t it strange, the notion that in the whole world there’s only one right woman for each man and one right man for each woman?” Often, she and I started singing the same song at the same time (we loved to sing in harmony together). I was truly in harmony with her, and we shared a deep spiritual bond that transcended the pain I felt at seeing her suffer. And this bond enabled me much of the time to know the right thing to say or do to relieve her distress. Of course, there were times when it was Don who had the better instincts; that’s why children are born of two parents and not one. But so many times it was my own instincts as a mother that helped her through.
So as painful as it is now to witness Sheila’s suffering, fear and uncertainty, I know that the best way to help her is also the best way to preserve and deepen our relationship. I’ll continue to do my best to give her all the “technical” help she needs – drive her where she neesds to go when she's not up to going alone, financially enable her to visit medical specialists not covered by our health plan, find out about the different alternatives available, and so on. I’ll continue to be there to listen when life seems overwhelming to her. But I’ll also help her see what Timmi taught me – that it’s possible to live, and love, even a physically difficult life – as long as those we love continue to share our lives.