Wednesday, January 26, 2011


In my ideal life, right now, I would have time in the morning to scribble down what comes to my mind on waking. It's the time when my mind is least inhibited by reality, is beyond it; when what I think is most likely to be creative and weird and free. I always think I'll remember to write it down, but I never do. By the time I get to work it's gone, the colors all have run together, the shine is off the shiny parts, and I am once again the automaton that earns my keep. I have to make myself be less alert, I guess.

Was chatting with a friend about risk taking when the risk is small. Another chimed in comparing drinking tap water to the higher chance of getting hit by lightning.

Lightning is nothing compared to regret.

The second summer of my first marriage, my husband and I started an interior renovation company. One of our clients had a lovely brownstone in Brooklyn that we were restoring. The kitchen had maple cabinets, which I spent the spring stripping and refinishing. I knew the label on the Zipstrip had warnings about benzene, carcinogens, open ventilation, and masks (I wore one but not a gas barrier). I mostly stripped outside, but I saw those warnings as overblown as the warnings on Sweet n Low packages. I figured, I'm never having kids, I'm not pregnant, I'm only doing this for a few days, I'm not a rat being injected in lab with 10000 x the possible lifetime dose...

Two months later, I got unexpectedly pregnant.

Twenty-three years later, I paid the price for my assumptions.

People tell me it's impossible, or at least highly unlikely, that this is the cause of Jesse's APL. I do searches on this topic every few months. I tend to look for blame ("something I did" + "APL" + "young adult" = not objective research).

The debate changes direction a lot. It's gone from an assumption that this only happens to children or the elderly, to the present evidence that it occurs most often in young adults; from arsenic as an old wives' tale to arsenic being the answer -- the doctor who treated Jesse in Chicago has his name on much of the US research on this particular form of leukemia, and the research is confined to populations as small as ten. They have to group it with other classes of leukemia to raise a population into three digits. Too much they don't know.

No one knows how long it takes for one misfolded gene to go crazy. Six cases for every ten million people.

I know the jury's going to be out re: causes of leukemia, especially one as rare (and curable) as APL. That's how science is. But my larger point is that ignoring a risk because it's relatively small can be painful, not just because of what could happen to you; but because when something does happen, at least you'll know it wasn't because you were drinking poisoned water.

Someone at work once said he had a mother-shaped hole in his life; for me, it's a Jesse-shaped Something. Not a hole, the opposite. Love is an easy term for it, I guess, but it really doesn't express this. This consuming wave of longing, guilt, regret, joy, love, relief, respect, pride, nostalgia, this unfinished song hanging in the air. This never ending grief.


  1. At some point, risks are so attenutated as to be senseless. Maybe if you drank/didn't drink floridated water, maybe if you lived somewhere else, maybe if 9/11 hadn't happened, maybe, maybe.

    The jury is out on environmental causes like this because it's so freaking hard to control for all the possibilities. If you never had him, he would have never died. But more importantly, he never would have lived. And given you so much to think about. And given you the opportunity to be a wonderful, totally flawed parent, and a spectacularly unflawed writer.

    My heart really aches for you.

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  3. They just confirmed our son had/has Biphenotypic Acute Leukemia that generated in his stem cell. So he was born with it. I too am wracking my brain, what did I do to him while pregnant?
    Iso, we both need to get over the guilt, I know we both did what ever we could while pregnant to have ensure we had healthy babies.
    I know you can never let go of the grief, but do let go of the guilt. We can't go back in time & change anything, we don't even know if it was anything we did.

  4. Ache. I feel it as an ache with a specific shape.


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