confession

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.

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.

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.

nam myoho renge kyo

I've been trying to embrace the course of my day. Physically and mentally. After so much time in bed, in pain, my first inclination is to take an escalator instead of the stairs, the train instead of walking, sleeping a little later. It's not always wrong. I just have to learn to slow down until I'm ready for each new action. Meditation helps. Not in lotus position or anything, but as I walk, I clear my mind, become conscious of the act as I move through space. Today I was thinking, or rather, became aware of the mantra of Nichirin Daioshin Buddhism, nam myoho renge kyo. You can look up all the sites that talk about this mantra, which roughly translates into 1. the entire meaning of Buddhism 2. the name of the teachings of Buddhism (devotion to the lotus dharma, or the cycle of enlightenment) but I come at it differently. Today I think I had a little breakthrough.

It would be a lot to explain, but think of the idea of grace, as enlightenment. Grace is a gift of spiritual or moral vision, of favor or love, if you believe in God. If nam means devotion, or "I devote myself" it can also mean, "I take refuge in" or "I surrender myself to" the lotus dharma, the path of grace. The path of grace is not something readily apparent, you can't always travel on it. You don't always know whether you're on it or not.

I've written about one of my favorite sayings, from a conversation with the guy who runs my local hardware store: there are two ways to do everything, the right way, and over and over again until you do it the right way. This is an essential spiritual teaching, for me. I want to believe with Buddhism, that all roads lead to paradise. That you can struggle all you want against this or that encumberment, but eventually, you will lean to surrender yourself to the lesson.

I heard a woman tell the story of her near death--- that her first words, on coming out of the coma were about herself in the third person. She had been out of her body for so long that her own life seemed to be someone else's. And after all, if we are spiritual beings on a human quest, how can we know who we are outside of this existence? The batch of chemicals we travel in guides our emotions, our thinking, our every moment. Until we are free of the illusion that the person we think we are, right this minute, is who we really are, we can't begin to answer our real needs. I'm not saying our emotions and thoughts aren't real, our physical bodies, too-- they're all real, but they are only temporary.

If I can surrender myself to the path of grace, take refuge in the cycle of enlightenment, devote myself to learning what can't be taught, where will I end up? All I can do for now is stay open to it. I can't fight and force myself past my own abilities and reach the path of grace. I can't stay still and protect myself from life and pain. I can only move along slowly, eyes open to what I might see, and encourage myself to take refuge in the hope that I might be moving in the right direction.

And so, as I walk out onto the street, I listen to the sounds around me, I see each person who passes by, I try to open myself to the day, to devote myself to the path, and take refuge in the grace of its wisdom. If all I get out of it is some peace before I start my day, the courage to walk up a flight of stairs, well, that's not a bad thing.

Hello out there

I'm finally feeling better, dug into my savings and paid for botox injections to kill off the migraines and that plus a vicodin and a martini & there's a blissful-ish moment to think. For now. I barely made it through work, I reach a certain point where my whole body is buzzing and my head is a mile across, like right before you ge the flu, but I know it's the migraine trying to come back & it doesn't matter what I have in front of me, the outcome will not make sense. The night editor sent me home. People can see this in my face. Pinched and half focused, and a hundred years old. I drag myself to the curb and a cab. By some miracle I end up at home in bed but nothing helps until I assemble my arsenal.

Un-pain is my fantasy land.

The other day I saw a baby-- a man with a baby in a snuggly thing on his chest; I mean. But I saw the baby more than the man. Because the baby had that shock of fuzzy, staticky blond hair like an insubstantial halo. Like Jesse had as a baby. And I looked at the father, I was behind them, and it was in the subway station-- the father was in his mid twenties, with hair the same curly dark blond Jesse's would be. I'm telling you this because it's gotten to be a regular thing. Guys who look like Jesse. This was the first time that, like a dream, baby Jesse and adult Jesse were together and I thought, that would be life, my life. If we'd been that lucky. I wanted to tell this total stranger: be thankful. Get down on your knees and thank God you are alive in this crowded subway station with your sleepy baby on your chest. You have everything.

I hope he realizes it. I hope I can see my own everything before it's taken away again. I hope you see yours. Because that would make all this worthwhile.