on being sick

goodbye to all that (to my thyroid)

I’m afraid this may have the searching, shambolic quality of a diary entry. It certainly won’t be a finished consideration, just an informal groping in public, which I guess is what Substack is for.

This year has been one of the best of my life, in terms of all my usual projects and pursuits: I got a job I love, I received galleys of my first book, I got to write a lot of pieces that I care about, I moved away from one of my least favorite cities in the world (Boston), I read a lot of great books (The Fifth Child, Flaubert’s letters). It was also by far the worst year of my life, medically speaking. First, I felt weirder and weirder, more and more etiolated, while the admittedly not-very-good doctor I could afford on my pre-job health insurance and several of my well-meaning intimates assured me in chorus that I was just stressed. Then, I got a job with substantively better health insurance, moved to DC, and actively sought a competent doctor. I was diagnosed with a pre-cancerous stomach condition that prevents me from absorbing vitamin B12—and, accordingly, with severe, off-the-charts, I-can’t-believe-you’re-still-walking B12 deficiency. All of the symptoms I’d been told I was either imagining or generating via a mist of stress-emanations were real, substantial: I was exhausted as a wrung-out lemon, I was losing my hair, I was losing feeling in my hands and feet, I was experiencing heart palpitations, and I was anxious in an especially haunted, hunted, harrowed way, not only because it’s rational to feel anxious when you have a horrible disease that no one is acknowledging and finding it increasingly hard to stay awake but because low B12 makes you anxious. It turns out, in sum, that you need B12 to function in the most basic ways—simply to feel with the tips of your fingers without experiencing them as if they were stuffed with crinkly straw, simply to keep your balance. It also turns out that, if you catch “pernicious anemia” early, all the symptoms of B12 deficiency are reversible, although pre-cancerous damage to your stomach lining is not. (And it’s autoimmune, so it isn’t preventable.) I got B12 injections; slowly but surely, I felt much, much, much better. Finally, I felt not just fine but good. I completed one of the ten-mile weekend runs that I’d been dragging my body on and thought: that was easy!

And then—last week—my doctor told me that there is a 50% chance that the “prominence” in my thyroid that I casually monitor every year is cancer and that I will have to get my thyroid removed. (The only way to tell if the offending “prominence” is cancerous is to operate on it, anyway, and since I already have hypothyroidism and have to take hormone-replacement pills every morning, I might as well get rid of the whole thing.) To be clear: this is fine, in a way. My doctor doesn’t think it’s a huge deal; I will almost certainly (like, 99% chance) survive it; if I do have cancer, I may also have to take special radiation pills, but early-stage thyroid cancer is not a big deal. And to be clear: this is all more than fine, in a way. I’m so lucky I caught it early. I’m so lucky that I now have great health insurance. I’m so lucky that I have the resources to seek the care I need.

But because I’m a catastrophizer par excellence, it’s also not fine, in a way. When I felt wretchedly sick—when I insisted I was—it was close to a year before anyone believed me. But now that I feel abundantly well, bursting to the brim with vim and vitality, I am in fact severely sick, or at least 50% likely to be so. At best, this state of affairs is disorienting. At worst, it changes everything about my form of life, my formerly easy faith that my body and the world it moved in were not hostile forces.

It’s not that I doubt the diagnosis, or anything. I’m not one of these people who resents expertise so much that I take to online forums instructing me to cure myself by eating a diet of unseasoned raw steak and unpasteurized milk—although I will say that after my year of hell I understand entirely why people who don’t find good doctors turn to cranks and quacks, really to any available alternative, to anyone at all all who at least performs belief and promises to make the shriek of pain fall silent. It’s a real shock to the system, a real fall from grace, to realize that some doctors are not trustworthy, and that your ability to get an accurate diagnosis and effective treatment hinges entirely on your ability to find the right one—which it is of course more difficult, if not impossible, when you lack time and resources and generous health insurance. And this realization is just one of many assaults on the naive optimism of the healthy, one of the many ways in which sickness is not just a bodily affliction but a paranoid orientation. In retrospect, it’s obvious that doctors are horribly fallible, as obvious as the adult insight that your parents never knew what they were doing, not really, that they were always muscling through confusion and uncertainty and disorganization. But that doesn’t make the conclusion any less discomfiting. Still, I’ve retained my faith in specific doctors, which is easier now that I have such competent and compassionate ones. So yes: I am sure that my stupid, stubborn thyroid has to go.

No, it’s not that I doubt the diagnosis. It’s only that all of this is enough to make a person doubt the visible, the perceptible; to make a person fear that there is an unseen and malignant world beneath the one we can touch that is at every moment making inroads against everything familiar. When my body balked at every demand I made of it, I was told I was fine; but when it feels fine, it isn’t fine at all. So can appearances, sensations, be trusted? When we cannot even trust pain, a sensation that stands up and announces itself with a shout? “To have great pain is to have great certainty,” writes Elaine Scarry. The point she means to emphasize is that pain is like Descartes’s Cogito—you can doubt it from the outside, but first-personally, it insists on itself so obstinately that doubt is no longer possible. But neither pain nor its absence are good guides, it seems, to sickness. Pain and, by the same token, well-being cannot be doubted, but their implications can be.

Sickness is above all a rejection of the world of innocent appearances, an invitation to accept that there is an unknowable logic stronger than that of touch and tangibility. It an entree into suspicion. For soon, everything is inescapably implicated; the stain of sickness spreads like a dye. It infects the cells, the thyroid, and then it infects the world.

The first to go is the body itself, everyone’s most intimate companion, which turns out to be traitor to the self it houses. Every minor twinge is suspect. And even the lack of twinges is suspect. At any moment, your body could be incubating your death, entirely unbeknownst to you. And then the rest of it comes under suspicion. Why do I have a “prominence” in my thyroid and a precancerous stomach condition at the age of 32? Is it because I wear polyester clothing, because I smoked clove cigarettes in high school, because I drink from plastic bottles, because I used to eat meat, etc, etc? The path from sickness to conspiracy is short; after all, what is autoimmune sickness but a conspiracy? It is what happens when your body conspires against you. And if the “soft animal of your body” is in league against you, which animal, if any, can you trust?

Anyway, I’ll probably write a real essay about all this eventually….what’s the point of suffering if you can’t convert it all into words?