Magical Thinking

I've been hung up lately on why and how we got leukemia. It's shocking really how little time and energy Jim and I have put into this question so far. The doctors at diagnosis told us something like "the etiology is very complex, there'll never be a single cause identified, we know very little about what causes childhood leukemia, but don't worry, it is nothing you did." Hmm. It says a lot about one's state of mind at the time of diagnosis that this serves as a satisfactory explanation. In fact it has more or less held its own for 3 months.

But last week I was interviewed for three hours by researchers from the UC Berkeley school of public health as a participant in their study of the causes of childhood leukemia. The interview was unnerving in the end because of all of the possibilities it raised. What did I eat for the year before getting pregnant, during my pregnancy, and while breastfeeding? I literally had to estimate portion sizes and estimate weekly intake for every kind of food that you can imagine. There were lots of predictable questions about things like smoking and pesticides (which is my pet theory -- many of you have heard my rant about the gratuitous and irresponsible use of pesticides at Stanford West). No questions about microwave cooking or diet soda. Lots of questions about drinking water. There were lots of questions missing from the survey, things that I would have expected to be on there, and after the interview I lay awake at night thinking about some of them. I can hardly remember much of the interview, and now I can't really remember what I worried about the night afterward. I don't want to remember. Each possible cause reveals another way that we might be responsible.

I remember a few years ago when a neighbor's toddler died under mysterious circumstances how lots of us in the neighborhood, who cared and mourned deeply for the family, couldn't help generating explanations that had something to do with how the child was cared for -- we felt guilty for trying to blame them but almost couldn't stop ourselves. Believing that those parents did something we would NEVER do was the only way to make ourselves feel safe from suffering the same kind of horrible fate. So you can see where this leaves me now. Beneath the optimism, matter of factness and stiff upper lip with which I have tried to face this challenge, I carry guilt, sorrow and shame. It is not just that I think others might blame me even though they don't want to, but mostly I think I might blame me. What kind of parent, what kind of person, could have let this happen?

Here are some of my more magical musings on the subject . . .

I dreamt once, when Dayssi was an infant, that she fell into a deep pool of water and I dove in after her as quickly as I could, but never actually got my hands on her before waking in a cold sweat. I can still see her in that dream, falling slowly through the water in her purple and white flowered pajamas, with her hair flowing around her face, down, down down. When I woke my first thought was, oh my god, are we going to lose her? I had never had that kind of dream about India. But I reassured myself that it was just the normal anxiety of caring for two children at once; that I feared, like so many friends who'd just had their second child, that somehow I would lose track of Dayssi and something awful would happen to her. Since then that dream has come to pack a new punch. In Buddhism -- which I've always loved and on occasion tried to practice -- it is believed that we get back from the universe the kinds of visions and energy that we put into it. So maybe the dream wasn't prescient but productive. Did I make this happen by daring to imagine it?

More recently, after Dayssi's A.L.L diagnosis, I had another scary dream but it has been more of a comfort. I dreamt that Dayssi was standing on top of a large water pipe, as though she was at the base of a large dam, and waves started to crash against her from both sides. She was terrified and I couldn't reach her or even call out, but in my mind I begged her, hang on, hang on!! And she did. The waves subsided and she was still standing there, wet and scared, but clearly ok. So, if I can give her A.L.L. with my dreams, at least I can make her survive it the same way. Phew.

But the UC Berkeley researcher did not ask me about my dreams.

I asked Jim the other night -- do you ever think about what caused this? He looked up and said with utter calm and certainty "No. It's just a random mutation." Maybe so. But I don't know what is harder to live with: the possibility that we did this to Dayssi, or the possibility that we had nothing to do with it.