February 13, 2000
Unfortunately this update won't be quite as positive as the last. At the end of last week Timmi started experiencing quite strong pain in one of her elbows, which is the site of one of the largest of her tumors, as well as pain in other places where there were tumors in the past. Because she still has no detectable GVH, this is not surprising - we knew that the preparation for the transplant, in and of itself, would not keep the tumors from growing back. The pain is now more under control (though not totally eliminated), through an increased the dose of painkillers. Her mood could be better, to say the least, although there are ups as well as downs.
There is still a chance that the GVH will show up, as she discontinued her cyclosporin at the beginning of this week. If there is no GVH within the next week or two, she will start receiving interferon, a drug meant to "activate" T-cells and thus induce the hoped-for GVH and concomitant anti-leukemia effect. So for the moment we are mostly waiting.
As for me, I've been kind of wasted recently, functioning not quite as well as I have in the past. Hopefully this is temporary; I usually bounce back from these periods.
Shabbat Shalom and love to all.
February 26, 2005
As I’ve written before, one of the many very difficult things for me (and, I know, for other parents) about having and, especially, losing a child with cancer has been the seemingly unbridgeable gulf that this earthquake opened between me (and parents like me) and the rest of humanity. As I’ve written in earlier posts (see “Community,” October 2004, and “Support,” November 2004), that feeling of isolation can be overwhelming. It felt as though no one I knew would ever truly be able to understand what I was going through, other than my close family and other bereaved parents. That was why I joined my first support group, which turned out to be a disaster, and why I dared to join the group I’m now part of despite my traumatic experience last time.
I entered my present group with some trepidation, and after the first meeting I doubted whether the group would be able to do much for me. After all, I'd joined in order to meet other bereaved parents, and the group is composed of people who have lost any loved one to cancer. What would I really have in common with someone who lost a parent, for example? If there was one thing that used to drive me crazy while Timmi was ill and after she died, it was someone coming up to me and telling me that she “knew what I was going through,” because (for example) her mother was suffering from cancer. As hard as that experience is (and I know how hard it is, as my own mother died of lung cancer in 1996), it’s still in the natural order of things. Parents are supposed to die before their children do, and human beings have built-in, natural mechanisms for coping with a parent’s death. Losing a child, however, turns the entire universe upside down, and disorients those of us who go through it more completely than anything we’ve ever known.
Then there’s the feeling of having failed in our role as parents. Unless a parent-child relationship is unhealthy, most children – especially adult children – don’t believe their role in life is to keep their mother and father safe from harm. A parent’s suffering is hard to bear, as is our helplessness to alleviate it, and it’s always very sad to lose someone we cared for deeply. But the grief parents feel at witnessing the suffering and death of a child – this intensely beloved being that all our instincts scream at us to protect – is truly indescribable. (Although I must say that Robert Avrech has come very close to capturing that grief in his blog “Seraphic Secret” (see the Links section) and in the article he wrote for the Jewish Press, “My Heart Unhinged”).
As time went by, though, I found myself becoming more and more emotionally engaged with the members of my group. From the beginning, of course, I could identify with the two mothers who'd also lost children. But as I got to know the others better, and heard more about what they were going through, I couldn’t help but empathize with them. David’s words about his mother, who died when he was very young, brought back the loss of my own father when I was fourteen. When Ari and Jacob spoke of mourning their wives, I went cold inside to think how it would be to lose Don, and to live alone after so many years of love and companionship. Hearing all the group’s members speak of their deepest sorrow brought me closer to them, even to those who hadn’t experienced the illness and death of a child. Still, for many weeks I felt that I hadn’t gotten, and would never get, what I’d hoped for when I joined the group – relationships with with other bereaved parents, the only people who could truly understand me.
Then something happened at the meeting to which each of us brought a picture or an object (or both) connected to the loved ones we’d lost (I described this meeting in my previous post, “Making Things”). As the members of the group spoke of those they'd lost, and what these pictures and objects meant to them, I began to feel a very strong intimacy with the entire group. I felt I knew not only the members of the group, but something of their departed loved ones as well. And, almost miraculously, I felt that they'd begun to know me, and also to know something of Timmi. For the first time in what felt like forever, I began to feel a bond with a group of other people based on understanding each other’s deepest experiences. Neither I nor anyone else wanted the session to end when it did. At the next session, which was to be our last, we unanimously asked to go on meeting, and although it took some arranging, we will continue to meet in the foreseeable future.
I experienced a kind of illumination that evening. I saw, for the first time, how much I have in common after all with the others in the group, including those who aren’t bereaved parents. These people know, as I do, how it is to feel so wasted that they practically can’t function, but to go on doing what needs to be done because there’s no one else to do it. They know about cycles of hope and despair, and what it’s like to hold on even to the tiniest hope all the way to the end – and what it feels like finally to lose that hope. Their lives, like mine have been profoundly affected by their loss, and in many ways they also see lives in terms of “before” and “after.” With all the differences among us, all of us are in mourning.
Realizing all this was a watershed for me. I still see losing a child as the most traumatic experience possible, and can't pretend that I feel completely understood by anyone who isn't another bereaved parent. But although the divide between me and the rest of the world is still there, I now longer feel that it’s completely unbridgeable. If I can see my mourning in the context of any human being’s natural sadness at losing a loved one, if I can hear other mourners’ pain and be heard by them, then we do share in a basic human experience. However unnatural it is to lose a child as opposed to a wife, a parent or a sister, I can give support to – and receive support from! – people who aren't in exactly the same position that I am. It may sound like an exaggeration, but I am completely sincere when I say that, at least in this small way, I feel as if I’ve rejoined the human race.