1.
Recently a beloved friend texted me to see how I was doing and I let him know that my symptoms had worsened. He replied, “Good luck on your journey!” and despite the aforementioned beloved-ness, I wanted to punch him in the fucking throat. Which, to be clear, is something I’d never do, unless the person in question were a proponent of fascism, capers in salads, or insisted Yoko broke up The Beatles.
I hate the platitudes and euphemisms that surround illness, perhaps because I’ve been assailed with so many of them since I first became sick then disabled when I was 24 in 1991.
My “journey”, such as it is, is living with the degenerative, thus far incurable, and potentially fatal neuro-immuno illness Myalgic Encephalomyelitis. Each day my body is wracked with what feels like an unending, ungodly severe flu, replete with recurring fevers, persistent chills, and unending muscle aches. I’m always dizzy, as if my Seattle apartment were a ship at sea, rocking up and down at the behest of waves only my central nervous system can detect. My lymph nodes have been swollen since early in the first Clinton administration and I’m never not nauseous. My blood pools in my legs and doesn’t return to my heart as it should, making it a challenge to sit up and, indeed, I’m writing this as I’ve written everything I’ve published to date in my career: lying down. My immune system no longer properly fights secondary infections, leading to three protracted bouts of pneumonia, shingles that lasted five months, and a sinus infection entering its third decade. Due to encroaching nerve damage in my right leg, I walk with a walker and am unable to drive, prompting me to either ask loved ones yet again for a ride or to spend my dwindling cash on car fare. Also nestled in this body—for reasons that are perhaps becoming clear, I sometimes I find it useful to think of it as an entity separate from myself—are the vestiges of Stage 3 thyroid cancer that spread to at least four lymph nodes, and the myriad ongoing complications from surgery and radiation treatment four years ago. To boot, several medical tests confirmed my instincts were correct and that I had a small heart attack in November 2022. The cancer and cardiac episode aren’t as random as they might seem: research shows that persons with Myalgic Encephalomyelitis—hereafter called “M.E.” for all our sakes—bear an increased risk for both.
I’m not on a journey, but stuck in a maze in hell.
2.
In keeping with much of the language surrounding major illness and/or disability, M.E. itself used to be known by a euphemism, “Chronic Fatigue Syndrome”. In an act both hideously stupid and probably misogynistic—we’ve known from the start that most persons with M.E. are women—this is the moniker the Centers for Disease Control bequeathed when laying out its diagnostic criteria in 1988. As tens of thousands of us were told by our physicians that we were “just tired” or “burned out” because, after all, “fatigue” was right there in the name, the CDC estimates at least 3.35 million Americans have M.E. Out of the original CDC physicians who never thought twice about giving an incapacitating illness a name that proved dangerous to those stigmatized by it, only Harvard’s Dr. Anthony Komaroff later apologized.
If I hadn’t written about M.E. extensively for the Washington Post, I’d be far more vulnerable to physician error or abuse, both of which shadow persons with M.E. like pigeons on pizza crust. Instead, my work renders me safer than I was at the onset, when I was a young woman struck with such force by what was likely a virus—hold that thought—that over a three week period I went from working out each day to ensconced in a wheelchair, unable to lift my head. Repeatedly, physicians accused me of “faking symptoms” or “seeking attention” and as I asked one cardiologist, “Does it seem like I need to fake an illness to get attention?” Now I can send my doctors links to my WaPo essays which in turn link to the latest research at Stanford Medical School and other unimpeachable facilities. And when my doctors finally acquiesce and read said pieces, i.e. do their jobs, I tell them, “Now you need to treat the waitress with M.E. like I’ve convinced you to treat me.”
My bed might be my de facto home now rather than the destination for coital romps it used to be, my physical strength siphoned by each passing moment. But I know I’m very much one of the lucky ones.
Even so, most of my life is over and it didn’t have to be this way.
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