Autoimmunity

I haven’t written about autoimmunity because for a long time the disease felt too eager with metaphor. Your body is at war with itself! Self-destruction! Gender! Oh my!

Except, it occurred to me recently, falling asleep during the fall semester, my body is actually in conflict with itself. Maybe not at war, exactly, which assumes human motive, good or bad. Literally, though, in the old definition of “literally,” one part of my body keeps destroying another part. My immune system keeps killing the islet cells that, if given a brief chance to grow, would release insulin.

I tried to express my sudden conviction in the literalness of the conflict to my boyfriend, who is not sick. “It is actually happening!” I said in bed, in a slight frenzy. He didn’t understand. The confusion stemmed, in part, from my lack of clarity about what was the thing actually happening: an actual conflict within the diabetic’s body or the actual description of the conflict.

It’s both, of course. At four-years-old, I was told that my body was attacking itself. Even if that were a lie, the declaration is a real event in a young girl’s life. A double lesson: you have a body and it is not on your team. That story rends the body not only from the self but from itself. There are two bodies, the body that attacks and the other body, weak and helpless, that cannot defend itself. Neither inspires much devotion.

As a kid, I personified both my aggressive T cells and pathetic islet cells under siege. I identified with both: small, trying to thrive, but also very bad, which I already knew I was.

But the story of internal conflict wouldn’t have been so powerful if it were not, in fact, true. In On Immunity, Eula Biss recounts an argument between doctors and holistic health care professionals about whether the immune system is actually a body at war—and, in the case of autoimmunity, at war with itself. I read the book shortly after my nighttime epiphany in my boyfriend’s bed, and felt a sense of recognition I’d previously only experienced reading feminists for the first time.

In contrast to most conventional doctors, Biss wrote, alternative medicine practitioners tend to reject a rhetoric of conflict in which the immune system “fights off” invaders, instead opting for the idea of a body striving for balance. One holistic health devotee, Biss recounts approvingly, imagines the immune system as the body’s “ebbs and flows.” The autoimmune body would, then, be what? A body that ebbs mistakenly?

I like that story. I imagine what it would have meant to hear that narrative, instead, at age four. Chronic illness doesn’t feel like ebbs and flow, though. A body that flows back when it ebbs is a well body. I eat too much, or I am out of the insulin and away from the vial in my fridge at home, and my blood sugar spirals up and up and up and I desperately try to wrestle my body back to me.

* * *

My body has turned on me! I am, literally, destroying myself. What do you say after that?

Of course, everyone’s bodies turn on them.

Diabetics have shorter life expectancies, in large part due to long-term complications from chronically high blood sugars. More interesting to me is that we suffer from staggeringly high rates of eating disorders. Earlier this year, Bryce Covert wrote an essay I love about how diabetes makes impossible the kind of non-thinking we, women, are told will save us: not thinking about how much we eat, not thinking about its exact nutritional metrics, not thinking about whether we had half a cup or three-quarters of a cup of blueberries. Covert writes that, before she was diagnosed, in recovery from an eating disorder, she vowed “to let go of counting up everything I ate and tearing myself apart if I went over an imagined limit. No more austerity; if I wanted a cookie, I ate it and coaxed myself into letting go of the guilt. If I was still hungry after dinner, I simply had more.”  

Of course, as Covert learned after her unusually late diagnosis, the extra quarter-cup of blueberries matters for diabetics. There is no “simply” more. For every fifteen grams of carbohydrate I eat, my body needs one unit of insulin fed through a plastic tube into my hip. I calculate my doses of insulin to the tenth of a unit, the necessary dosage for one-150th of a gram of carbohydrate I eat. That’s not to say I am nearly as diligent as I should be, because I am not, but that is how good I am asked to be. Which is roughly how good all women are asked to be.

Denying those expectations is brave in any other circumstance. Yet a diabetic’s escape out of austerity to self-acceptance risks kidney failure. In college, years after she stopped starving herself, my friend Kate Orazem wrote that “no matter how much I try to forget I could still tell you without hesitation the number of calories in a handful of almonds or two and a half Saltines.” I grew up in a part of New York where girls begin fasting for Yom Kippur before their bat mitzvahs because it’s an excuse to eat less. I flirted with the pathology Kate names and resisted, a repeated exercise. But I should be able to tell you the number of carbohydrates in two and a half Saltines so I can calculate a dosage, and I am unhealthy because I cannot. I chose this sickness to defend against the other.

***

Many things are dangerous, and one of them is confusing metaphor with reality. The summer after my freshman year of college, I went through a bad break up. I was abroad, counting down the days to seeing my boyfriend by the calendar of my birth control. Five pills to go, he told me over the phone that I wasn’t bringing him closer to god; I was too earthly, too rooted in my body. (He had previously told me he studied so many languages to be more like Jesus Christ, so I had been warned.) I broke up with him out of ego. I wanted to beat him to it.

My doctor wouldn’t approve my travel unless I lowered my hemoglobin A1c, the measure of how good a diabetic I am. But I returned to the U.S., contrary to my ex-boyfriend’s analysis, further from both God and my body. My parents had recently moved, and I spent the month before school in a strange new place making terrible decisions about many things, including my blood sugars. One morning, I woke up alone in their sparsely furnished apartment and realized I was probably about to have a seizure. I poured sugar packets into my mouth while dialing 911. Miraculously, my blood sugar rose just fast enough to keep me conscious and in control. The ambulance showed up to the wrong building.

Later, I wrote a poem about it, drawing an unsubtle but imprecise connection between the almost-seizure and the break up: the ex and I had planned to spend that weekend in New Haven together to welcome the coming school year before everyone else arrived. My literally sophomoric poem pointed to an instability in the world that manifested in the fact that my boyfriend and I were no longer dating and I had almost split in two as well.

The poem workshopped well in seminar that fall. But it elided a more urgent and more genuine truth: that I was very sad and, as a result, was taking terrible care of my actual, real body, risking actual, real kidney failure, blindness, heart disease, and amputation. I could sort through all my sturm und drang, sure, but I also just needed to eat the right amount of food and take the right amount of medicine. It was college, and I was writing, so I thought I should work everything out. Purge crisis through cathartic excess. In fact, I needed to get my shit together.

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