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.

Tuesday, January 25, 2011

he loved

He loved the smell of my cooking, even when it wasn't something he intended to eat. The smell of frying onions and garlic, specifically. He acted like he didn't listen, but he did. He seemed so critical, so ironic, but he wasn't. He was so angry with me, but he didn't stop trying to move past it. He wanted to fix things. Lives. The world. Injustice. He loved.

Sunday, January 23, 2011

I find myself unmoored in time.

The first time this happened, it was intentional. I was 13, thinking about who I would be when I was 17. Would I recognize myself? Would I like who I had been at 13? If I met myself would I love me? At 17 I remembered that day, and thought back to it, willed myself back to that day, back to myself, spoke to myself at 13 so I'd know, in that past self, that the answer was yes. I do love you, I told that shy, lonely, younger me. I understand. There is nothing wrong with you and everything turned out fine so far.

Now I look back at earlier selves and realize that I have been doing this more than I knew. When I was pregnant with Jesse and his father tried to get me to have an abortion, I gave myself faith. When Jesse was little, I cherished every minute, because it was all beautiful, even the colic and the 3 am feedings. And because something told me it would be gone too soon.

Then there were the dreams. In one I was in my old bedroom from childhood, but instead of my sister on the other bed, there was a man I knew was going to kill me. He was telling me about how he had killed someone by driving a pen into her ear with a hammer until it punctured her brain. I could see it in my mind's eye as he talked (I can still see it vividly, almost feel it happening to me, too). I tried to casually say I had to go to the bathroom, but I'd be right back, and he said, "I know you will," and I turned to see my baby in a blanket on the bed next to him.

I had nightmares like this all the time. Each scenario got worse until one night I dreamed I couldn't save Jesse. I knew.

Now I take time to go back and let myself know what I need to know. I don't think I can change anything but my own attitude, my way of being. I can only give my past self encouragements, warnings, hints. But then, if anything else changed, how would I know? It would already be the past before I ever went back to change it. It comforts me to feel some responsibility to my earlier selves.

Maybe it's just an eccentricity, a self-indulgence. I don't care. It's not any crazier than a hundred things you believe and never question. It keeps me from being too hasty now, too sad. Maybe it's my future self, come calling, letting me know that better things will come.