Support

November 3, 2004
This Shabbat, Jews will read the weekly Torah portion called “Life of Sarah,” which opens by recounting our first matriarch’s death. The end of Sarah’s life story is told almost immediately after the story of Abraham’s near-sacrifice of their son Isaac. Talmudic legend has it that the Evil One came to Sarah and told her what her own husband had done to her only son – and she died on the spot. I think I understand now, in a deeper way than I ever did before, why this happened. Sarah felt not only the pain of losing (or almost losing) a son, but also of knowing that she was, and would remain, alone in her pain. Without support, she couldn’t go on living with such overwhelming sorrow.

After Timmi died, I also felt sometimes as if it would be impossible to go on. The prospect of spending the remaining decades of my life as a bereaved parent filled me with despair. I am more fortunate than our matriarch Sarah in that Don and I are very much together in our loss, and have many times been able to help each other through very hard times. But sometimes it’s hard for us to manage alone to pull each other out of our darkest places. At those times, I feel very strongly the lack of a community of people who can find me where I am and help me out of my despair. Although I love and am very attached to my religious community, I’m “here,” and they are “there” and can’t truly understand me. (And I hope, please God, that none of them will ever be in a position to truly understand me.)

I tried to deal with this loneliness by joining a support group for parents of children who died of cancer. My experience there only succeeded in making me feel even lonelier, but I’m now at a point where I think I’m ready to try again.

I took some convincing to join the group. After Timmi’s illness came back, Don and I tried a group for parents of children with cancer. Don felt immediately that the group would have nothing to offer him, so he didn’t continue with it. I tried, but stopped attending after only a few sessions. All the other parents there had children who were sick for the first time. What they needed was to strengthen each other in the hope that their children would survive; what I needed was to process the fact that my child probably wouldn’t. They didn’t need a constant reminder of their worst nightmare, and I didn’t need to hear about the high cure rates for childhood cancer (we had been told, at one point, that Timmi had a 90 percent chance of living).

So when the same organization called about two years after Timmi died and invited me to join the new group, I was hesitant. At that point, I was already processing my loss in therapy, and the other parents had lost their children much more recently than I had. I was afraid our differences would outweigh what we had in common. The father who phoned me, though, was sure that my experience could help the more freshly bereaved parents, and I did feel a need to share my feelings with other parents and listen to their own stories and feelings. So I agreed.

There were four couples there, and one other woman who had come to the group without her husband. At the first meeting, as each story was told, I felt a bond forming with the other parents. Here were people who knew the pain of losing a child. Surely they would be able to really hear mine? I felt a stirring of hope. Perhaps we’d all be able to help each other.

There were times I did find relief in sharing experiences and feelings with the other parents. I found that, like me, many of them had not had a full night’s unbroken sleep since their children had died. All of us shared our frustration with the never-ending “advice” we got – to take our children abroad, to try alternative therapies here, to go to rabbis to ask for their prayers... One of the couples recounted how they had stood on line forever waiting for a blessing from one of these “holy men,” and ended up feeling like merchandise on a conveyor belt. Another time, we talked about whether it comforted us knowing that our children were now in a better place. A mother who had lost her four-year-old expressed her worry and guilt that her daughter was in this other place without a mother to take care of her. A father told us how he saw and spoke with with his son every day, and many of us (including me) expressed our envy and wish that we could see our children even in our dreams.

But those moments of being truly together were few and far between. Most of the time we pulled in different directions, because we had very different needs. “Miriam,” the other lone mother in the group, wanted desperately to know Why. How could something so terrible have happened to her innocent son? The answers she got didn’t speak to her at all. The “we can’t understand the will of God” response didn’t work for her (and doesn’t work for me) because it still leaves open the questions why God would will such a thing, and why He gave us the power of reasoning if He doesn’t want us to understand. And if her son was really in a better place, why didn't he send her some sign? Didn’t he want her to know that he was where he should be, that he still loved her? I was deeply moved by Miriam’s scream of “Why?”, and hoped the group would explore it with her. But some of the group’s men shied away, and whenever she tried to express the full force of her pain, they changed the topic after the first few sentences. She started coming less and less often.

Like Miriam, I wanted very much for all of us to share our feelings and thoughts about the hardest places we’d been. That was why I had joined, after all. But the men who kept silencing Miriam (there were two who dominated the discussions) apparently didn't want this, because they spent a huge amount of time talking about things like the exact details of the chemotherapy their children had received (how many courses? how long? which medications?). When we started getting close – or threatened to get close – to emotional issues, they would sidetrack the discussion.

Once, when I started to tell of the role that Reiki (a kind of healing through touch) had played in Timmi’s experience, “Aaron” started arguing with me vociferously about the difference (according to his definition) between Reiki and “healing.” I never got to finish what I wanted to share. Another time, when we began to touch on the place of our Jewish faith in dealing with such a terrible loss (a very complex subject, for me at least), the rabbi in the group started lecturing and pontificating. When I tried to explain that I didn’t agree with his opinion, I was cut short – and told (in almost so many words) that as a religious person, I should relate to this rabbi’s pronouncements as if God had given them to Moses on Mount Sinai. Politics was another sticking point – I was alone in the group in my convictions, while every one else there had thought we all had the same attitude, for example, to the Israeli-Arab conflict. But I didn't want to argue theology or politics . I wanted to connect emotionally. Wasn't that what we all really had in common?

I found myself taking Miriam’s role whenever she was absent, expressing (as she had before me) my impatience with the seemingly endless discussions of what were, to me, trivialities. I was already a troublemaker because I had questioned the rabbi’s interpretation of Judaism. Now I was making even more trouble by trying to keep the discussion from veering onto technical subjects and arguments about details. Paradoxically, as time went on and we got to know each other better, the group increasingly avoided sensitive topics. I grew increasingly frustrated. Then, one evening, Miriam tried to talk about the problems she and her husband had been having ever since their son’s death. Aaron and the rabbi told her in no uncertain terms that the group was not the place to bring up such subjects. She never came again.

Things went from bad to worse. I kept trying to get the others to open up, but that only happened in one-to-one conversations with the other women. In group discussions, Aaron would often interrupt me, with his extremely loud voice, in the middle of a sentence. I started speaking less and less. To their credit, the group’s two other fathers noticed this and sometimes invited me to speak. But my warm feelings at these invitations were tempered by my resentment at having to be invited – and only by a man – in order to express myself. Still, I kept hoping that things would change over time, and so I stayed with the group.

At our last weekly meeting, I tried once more. ( I still don’t know why, as this was officially the end of the “course.”) We were asked to share what the group had meant to each of us. But almost right away, the discussion was sidetracked by an argument between Aaron and the rabbi concerning exactly how many days Israeli law permits a parent to take off from work to care for a child with cancer. The argument went on and on and finally I said, as politely as I could, “But that doesn’t matter any more now, does it?”

Aaron exploded. He stormed out, saying he couldn’t sit in the same room with me, that I was always shutting people up, and that everyone enjoyed the group only when I wasn't there. He used very abusive language, and turned his voice up to full volume. I started crying. When he left, with the facilitator close behind him, I looked at the rest of the group, hoping for at least some understanding. I found none. I tried between my sobs to explain why I found it so hard to spend the group's time talking about National Insurance benefits. Not a single person responded except for Aaron’s wife, who echoed her husband’s words, if not his tone. At that moment, it became clear to me that they believed that I was to blame for the tension. When I realized that, I ran – crying even harder – out of the room.

I stayed out while the group resumed business as normal. I heard talking and laughter as they passed around the coffee and cake. No one entered the kitchen, where I was sitting and crying, until the facilitator came in and invited me come back to “resolve” things. It was incredibly hard for me to go back in, but I did. My heart was pounding, and the tears continued to pour from my eyes. What Aaron said to me was that he regretted the tone had had taken, although he stood by the content of everything he had said. The others looked at me expectantly. “Do you forgive him?” asked one mother. In the group’s eyes, I was the one who had brought trouble to Paradise, and so it was up to me to fix it so that things could once again be smooth and calm. I managed to choke out, “I heard you,” and everyone breathed a sigh of relief. I may still have been crying, but no one needed to worry about that, because harmony had been restored.

My experience with this group caused me intense and lasting pain. I had opened myself up, made myself vulnerable, and was then deeply hurt by people from whom I least expected it. I spent many months afterward back in the emotional fog that had followed Timmi’s death, barely allowing myself to feel strongly about anything. I felt cut off from other people even when surrounded by friends. My only relationships that felt true were with Don and our children.

Slowly, though, thanks to my family's love and my therapist's skills, I was able to make my way back from that desolate place, and started again to experience both real sadness and happiness.

When I look back at what happened in the group, I no longer feel angry. I understand that I was at a point in processing my loss where I needed to explore my feelings together with other parents. But many of the others were still in a place where they couldn’t bear exploring the emotional landscape of their own loss. Our needs were bound to conflict.

I can also see now that some of my attempts to offer support were interpreted by the men as criticism. For example, Aaron once told the group that he believed his son had died because God was punishing him for not taking good enough care of him. I asked him whether he thought the same could be said for all of us, and he said no. When I tried to say that I didn’t think God would single him out in such a way, he got very agitated. What I meant as a kindness – trying to get him to be as easy on himself as he was on others – he took as a challenge. As a matter of fact, I’m sure now that he (and perhaps at least some of the others) saw my trying to change the course of many conversations as a kind of power struggle, rather than as my way of expressing my own needs.

It may be that I would have had a much better experience in a group for women only, because men and women communicate so differently. The men in the group needed take the time to work out the details of the story of their children’s illness and death before they could approach its emotional fallout. The women knew their husbands needed this, and so they listened patiently while the men talked and argued about those details. Alone, the women would probably have expressed and shared their feelings sooner and more directly had we been alone, without any husbands.

How can I stay angry with these parents for what happened? All of them had very recently lost children. In moments of extreme sorrow and despair, we're all sometimes blinded to the feelings of others, even others who are going through the same sorrow and the same despair. We all need to process loss in our own way. Sometimes we need to immerse ourselves in our feelings, and sometimes we need to distance ourselves. These times aren’t – can’t be, really – the same for everyone, and so there will inevitably be periods when we’re out of synch with each other. There’s nothing to be done but to recognize when it’s happening, close our eyes and breathe deeply, and try to wait until we’re once again moving in the same rhythm.

Now that I understand these things, I think it’s time for me to try again to share my loss with other people, and to share in theirs. So I've signed up for a support group (run by a different organization this time) for people who have lost close relatives to cancer. The group will start in December. This time, I think, I’ll be able to give more space to the infinite variety of ways in which people deal with their grief. Hopefully, the others in the new group will also make room for mine.