Timmi continues to have "up days" and "down days" from the point of view of her strength. Saturday night we did go with her to the Hanoch Rosen performance, which she enjoyed thoroughly, and the next day three of her friends from school came to visit for her birthday; she felt relatively well and had a very good time with them. The next day, though, she spent in bed and the day after was still feeling quite weak. Yesterday, she woke up with a certain amount of energy, but in the middle of the day started having pain in various places.
Now it is the pain that has us worried. It actually got somewhat stronger today, and if this continues tomorrow we will again have to raise the dose of her pain patches. The pain is, unfortunately, in many of the places where she had the largest tumors in the past. This, of course, is scary. But she also has various other kinds of pains which are more indicative of post-transplant syndrome. The doctors still don't understand what is going on. Her liver functions, for example, are improving, but none of us (including the doctors) know whether this is good or bad, because if the liver dysfunction was due to GVH the improvement would mean that whatever GVH she had is disappearing. Actually, that would be consistent with an interpretation of the renewed pain as resulting from renewed tumor growth. We hope not.
Next week we will see if the improvement in her liver function has come with an improvement in her blood clotting function; if it has, that will enable a biopsy of her liver to be performed, which will give us a better idea of whether she indeed has some GVH.
Her mood remains relatively good; today she was with us for several hours in D. and B.'s sukka and really enjoyed herself, even ate a little. Then we came home and saw a video together; now she is working on a compiling and typing project for Lisa. As long as she has the strength to be active and keeps busy, her emotional state is usually quite good (the same can certainly be said for me!).
I wish all of you a joyous Simchat Torah,* and a Shabbat Shalom as well.
*Simchat Torah - the festival immediately following the week of Tabernacles.
October 31, 2005
At the beginning of the last school year, I wrote about Timmi’s relationships with other children her age (see “Back to School, September 2004). I wrote that in the last year of her life Timmi was very friendly with a group of girls at her school, who helped her when she needed it and tried to do nice things for her (such as her birthday celebration five years ago). But she never had the opportunity to form the kind of truly intimate friendships that are the hallmark of most girls’ adolescent years. This was because neither Timmi nor her peers were old or mature enough to bridge the enormous gap that her illness and brush with mortality had opened between her and those who had, thank God, never had such experiences.
Timmi’s cancer and death opened the same kind of gap between our nuclear family and our own friends - and even our extended family - with the result that we felt painfully isolated, with only each other to understand and share our pain. Over the last years, although it's seemed at times as though it would never happen, our journey has taken us to a place where we are able once again to enjoy the give and take of friendship.
After Timmi’s cancer was diagnosed, I didn’t feel isolated at first. My friends were universally supportive, and our religious community rallied to provide whatever help it could (see “Community,” October 28, 2004). I needed to talk and talk, and there was no shortage of willing ears. My children’s experience was less positive; being so much younger, most of their friends had no idea how to talk with them about their sister’s illness. A few of the older girls’ friends, though, visited Timmi quite often and almost always succeeded in cheering her up, even during her seemingly interminable stays in the hospital. (Some of my own friends also tried visiting Timmi in the hospital, but it only made her feel uncomfortable; who needs old people whom you barely know hanging around when you’re feeing sick?)
But the picture changed when Timmi’s cancer relapsed. All of a sudden, things got infinitely scarier; we were no longer within the “80 to 90 percent” leukemia cure rate that the doctors were so fond of citing, but headed for the dark side of the statistics. It wasn’t so easy now for me to be upbeat and optimistic, or for my friends to know how to be with me. Most had little idea how to be sensitive to whatever I was feeling at the moment, and go with it. As a result, some friends chatted about superficial matters to which I found it hard to relate. Some – including friends I’d known for many years – even began avoiding me altogether. Others looked at me with mournful eyes, just when I felt like either talking about Timmi in a positive vein or distracting myself with universal, day-to-day concerns. It was as if I wasn't allowed to be cheerful.
Once, coming out of synagogue, I was enjoying listening to a casual friend describe to another her recent trip to Europe . When she caught my eye, though, she stopped talking, composed her face into its saddest expression, and asked (in a voice dripping with sympathy), “And how’s Timmi?” I wanted to punch her. Another time, I was laughing at a funny story someone had just told me when a (different) casual friend came up and said, “Why are you laughing?” She then paused for a few seconds and asked the inevitable question: “What’s happening with Timmi?” Although I have no doubt that these friends meant well, the message I heard was, “Have you forgotten? Your daughter’s sick! How can you think about anything else?”
After Timmi died, things got worse. The emotional gap between myself and my friends widened into a yawning chasm (or, to use my usual metaphor, the divider between us became a seemingly impassable wall). Some of the problem was that I myself was no longer in a place where my friends’ love and concern could do me any good. There were a few of my friends who invested a great deal of energy in helping me get through my ordeal. Tova took me to lunch every week for months during my first year of mourning, and listened carefully and empathetically to everything I had to say. Debbie, Barbara and Veronika also called and invited me out with them as often as they could, and continue to do so to this day. I could see how much they loved and cared about me. But conversation with even my most sensitive and empathetic friends failed to make as much as a dent in my feelings of despair and isolation. And there were so many things that I couldn’t find the words to explain to others outside the “club” of bereaved parents. Only a year ago, I wrote Robert Avrech (the author of “Seraphic Secret”) that when friends ask me how I am, “I want to say that I’m no longer the person I was, and often feel as if I don’t even know who I am anymore. But I almost never say those things. I’ve finally learned to say “fine” when people ask, even if I’m not. The true answer would always be too long, too complex, and too true for most people to handle.”
Another problem was my friends’ genuine feeling of helplessness; they were at a loss as to how to behave. For example, some people didn’t invite Don and me to social gatherings, being sure that we wouldn’t want to attend. (With these friends, it was fairly easy to explain that it wouldn’t offend us to be invited, and that we could be counted on to accept or decline the invitation according to where we were emotionally at any particular time.)
But some people said and did things that so hurt and angered me that I didn’t see how I could maintain my relationship with them. During my first year of mourning, I had lunch with a woman whom I had known for years and whose company I greatly enjoyed when we would meet occasionally. Being utterly incapable of making small talk of any kind at that point, I tried to describe to her the depth of my depression. “Sometimes I feel as if there’s no point in living any more,” I said. She reacted by getting angry, and telling me that I had no call to say such a thing when I have other children who need me. I was so shocked at the vehemence of her reaction that I just shut up, and didn't bother to explain that of course I know I have other children and wouldn't dream of actually doing anything to end my life, and that of course I understand they need me and I spend most of my energy and passion on them and, and, and... No, I just quietly allowed the lunch to end and never went out with her again (neither of us has called the other since then).
More inexplicably, there were people, including one of my oldest and closest friends in Israel, who simply stopped asking me how I am. Whenever I spoke with this friend, she directed all conversations either to herself or to neutral subjects. If I began speaking of Timmi or of my mourning, she would change the subject within seconds. At times such as these, I felt a deep sense of betrayal, over and above the deep loneliness that never seemed to leave me.
Don and our children had similar experiences, finding that people with whom they had thought they were close were unable or unwilling to share their pain, or that they disappeared altogether.
I must admit that for a long time, although Jewish law forbids it, I remained angry with and resentful toward those people that I felt had deserted me. I felt I had lost not only my daughter but also most of my friends – as well as the ability to derive comfort from my relationships with those friends who had remained faithful. Those feelings only intensified my grief and deepened my despair. As grudges always do, the rancor I harbored clouded my emotional life, threatening to permanently embitter me.
But suddenly, a few months ago, I looked into myself and discovered something marvellous - all traces of my bitterness are gone. I found that I finally believe and understand at the deepest level what I'd been telling myself for years: people are only human. The very notion of a child’s mortality is so frightening that many people are unable to face it. The fact that I lost my daughter brings home to other parents the unthinkable prospect that they also could lose a son or a daughter. If there are some who can’t handle being reminded of this, who am I to judge them? All I feel now toward them is empathy; more importantly, I've forgiven them. Although they don’t have the language to express it, or even the ears to hear me express it, in their own way they do share my sadness.
At the same time I made this discovery, I realized something even more amazing: my friendships have begun once again to give me an intense pleasure that I thought had been lost forever. I can again speak with a friend and feel understood; sharing my troubles lightens some of the burden, just as it did so many years ago. I can again listen to others with a fully sympathetic ear; I’m no longer so traumatized by my own family’s catastrophe that I can’t give my full attention to other people’s lives and experiences. (And it’s a good thing, too, as I’m now training to be a social worker!) When I look around me during Shabbat services at my synagogue, I'm blown away by the number of people whom I care about, who care about me, and with whom I have a relationship that contributes toward my feeling of being held – embraced – by my community.
My renewed capacity for close friendship bore fruit this summer, when I was in New York for the first semester of my studies. I hadn’t lived in New York since I was 17, when I fled the city for college, intending never to look back. This summer, I took advantage of my two months in Manhattan to reestablish relationships with friends whom I hadn’t seen in decades. And I was fortunate enough to meet and become very friendly with several new people, with whom I hope and expect to become closer during my next two summer terms in New York.
When I look at my family, I see a similar process at work. Don and the children have healed at least some of the friendships that were hurt in the wake of Timmi's death, and have forged some new ones. And all four of my adult daughters are now in serous romantic relationships!
I ended last year’s "Back to School" post with a prayer that in the future our family would make and deepen relationships with those who haven’t had our experience. “I pray that what we went through won’t impoverish our ability to relate to other people, but will enrich it," I wrote. "Most of all, I pray that our pain will build not walls of isolation but bridges of empathy and love.” It seems that this has at least begun to happen for all of us, and for that I am very, very grateful.