Saturday, March 15, 2014

Cold Molasses

Last night I didn't sleep. At all. But, just to make sure I didn't get too bored with lying in bed, I did get to experience the nausea/abdominal whatnot side effect, which combination has put an end to any plans to stick with the meds today. It's back to the doctor on Monday to get the prescription changed, and back to "normal," which is decidedly not normal, though I never realized how much so until I was on the med yesterday.

And my big takeaway from that was: if that was really what neurotypicality is like, so many things make sense now that never did before, it's startling that I've even been walking around on the same planet as everybody else all this time. For instance, I *get it* now about why people look at my weight and think, there must be something wrong emotionally, or with self-discipline, or with *something* because, if my brain chemistry was "normally" like it was on that drug, being thin would be easy. For people who have that chemistry, I understand now how you do it. And the difference between that and my "normal"... I might as well be trying to fly by flapping my arms as to maintain a healthy weight. I understand now why I fail, why every pound that has ever come off has been such a desperate achievement, why every one that went back on was completely out of control. Yesterday I experienced the absence of the Rampaging Stim-Monster in my head, the thing that NEEDED ALL THE FOOD, that could not see food without absolutely fixating on it, even food I don't especially like, and that could hold onto that obsessive need for weeks at a time, until it was satisfied, at which point it would immediately want more. The RSM could occupy every stray moment and dominate every spare thought, it is a relentless onslaught of desperate impulses, and I have spent half my appointed years alternately fighting and appeasing it, but I had never realized just how loud it was until it was gone. Living with that and not getting fat would be an achievement on par with living under a waterfall and not getting wet.

Gertrude Stein once said of someone hardly anybody today has heard of that "he had the syrup, but it wouldn't pour." I think that's the best way of describing this way of moving through life. It is living in broken loops, where the handle and the spout are on the same side of the bottle. One of the questions I have been trying to answer to my own satisfaction has been where and how the bar gets set on "typical". If I am different, is that difference really so maladaptive that it has to be corrected? Is the answer really to medicate me, or would there not be more value in expanding our ideas about how we value abilities and differences? Yesterday answered many of those questions. We cannot remember the man who never wrote a novel, no matter what Gertrude Stein said about him. The syrup must pour to be of value.

I had a cousin, Shari, who very sadly passed away when she was just eighteen of an overdose from a treatment for her juvenile arthritis. She was only seven months my senior and we were in the same grade, and, for one year, in the same school. Shari moved slowly, deliberately, carefully - I don't suppose anyone reading this has seen what juvenile arthritis can do, and to me, because Shari had it, it was fairly normal. It is only when I look back on it now, I see the tragedy and the pain of it. But when we were both sixteen, I envied Shari. I envied her the deliberateness of her motion, the way every step she took was placed correctly and with care. I envied her the civilization of her manner. Shari raised finches and turned work in on time and, very unlike me, was on the Honor Roll. Also unlike me, Shari graduated from high school with college acceptance letters in hand. She was going to be a medical researcher and spend her life looking for a cure for the disease which had crippled her and which I had envied her, because it seemed then to be one of the secret keys to being careful, and deliberate, and to containing the wild energy I could not harness.

There is not a doubt in my mind that Shari, had she lived, would have moved - slowly, carefully, and without a step wrong - through academia and into medicine, and that she would have made solid, valuable contributions to the advancement of human health and happiness. Instead, twenty four years ago, in January, Shari died.

I do not demand that there be a rational order to the universe; I do not question the value of infinite possibilities even though many of those possibilities, like the loss of Shari and all she might have been and done, are rotten wastes. Over and again, for the last twenty-four years, I have thought of her, and of my life since she has been gone, and I have felt the same sick feeling of rotten waste about my life as I do about her death.

I have the syrup; it will not pour.

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