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How I Turned Up Missing

The last post on my former blog, reposted from May, 2016.

San Francisco was my destination in 1992, now it's the site of one of many May 25 protests around the world about ME/CFS, and the "millions missing," of which I am one. This May is also my 24th anniversary of getting sick, coinciding with my 25th Oberlin College reunion. In May of 1992, I was waiting around for Oberlin Commencement (I had graduated officially in December of '91) and I had suddenly contracted the ME/CFS "flu-like illness" that harkens the onset of the disease, though I had experienced what is known as "prodrome" (early, shadowy, pre-illness symptoms) in the years before, and in fact almost dropped out of Oberlin and stayed around the Bay Area in the Fall of 1998, when my body seemed to be saying to me stay but I didn't listen. But let me backtrack to the "prodrome" which -- if research would help us -- could become useful foreshadowing for patients and doctors: I had left Oberlin for a semester off in the Fall of 1988, after only one year of college, because of a lot of weird symptoms including -- most alarmingly and shamefully -- the sudden inability my freshman year to read and comprehend books much of the time, which in a college like Oberlin is a massive liability and something I had to conceal. I had been one of three Valedictorians of my high school class of '87 (over 400 people), so to lose an ability like reading was shocking to a facile brain. I remember sitting in someone's room at Barrows Dorm while a turntable spun aimlessly around -- I think it was actually playing Don McLean's American Pie -- and as I stared at it someone in the room said, "Peggy never has to read for her classes," and I just thought "if only you knew!" I wasn't choosing anything: I was coming close to failing at something I'd always been good at. My grades were actually nosediving. I kept trying to read about Stalin's great purges for Soviet Politics (I had taken classes that first year not offered in my public high school, like that and an awesome African American History class -- but I was even screwing up my "easy" art classes) and the words literally seemed to snake around the page, practically popping like bubbles in the margins in a hallucinatory fashion, and not until 2001 did I read about this exact visual symptom via an article on "Visual Dysfunction in CFS" profiling ophalmologist William Padula. "Persons with CFS have in essence suffered a neurological event that effects their vision similar to traumatic brain injury," said Padula, describing what he calls "post-traumatic vision syndrome (PTVS)," which includes, "intermittent blurry vision, perceived movement in print and stationary objects, headaches, light sensitivity and seeing words and print run together." If I hadn't dramatically abandoned my oil paintings in the art studio that year, like the autumnal painting I kept making darker and darker like a narrowing visual field, or the black and umber painting of a man facing away in a chair, not making eye contact -- they might have been an interesting study in pathogen-induced brain injury. I had planned to major in art, but I also had found myself getting toxed out in the printmaking lab my freshman year (the professor who taught that class later died pretty young of cancer: that class was held in a poorly-ventilated basement, where he also had office hours). I would go into class, and -- as with the turntable -- just sort of stare at things, as if seized by a long-running absence seizure, until my professor literally told me that I should drop the class. I did drop his class, and then dropped out of Oberlin for a semester to run off to Berkeley and regroup. I dropped art altogether. A humble and generous friend of my Mom's had fortuitously inherited a bunch of money, bought a house in the lush and gorgeous Berkeley hills, and she and her partner rented my friend and I the basement bedroom and kitchenette for cheap. I bought a scooter to use for those 6 months that I could fill up with gas for 30 cents, and we both got heavily into lattes and Cafe Intermezzo salads. I rode down to the Cheese Board to pick up bread, or to Peets coffee or the Berkeley Bowl. But I was strangely exhausted, sleeping way more than usual (not "depressed," actually really happy in Berkeley -- but pre-exertional-intolerant) while my friend hiked vertical step-trails up into the Berkeley hills and I just couldn't do it, yet I was able to wait tables for long and grueling shifts that resulted in me being passed by semis on an overpass out of Emeryville, the whoosh of life and death blowing past my vulnerable scooter. I seemed to be on the mend though, and taking a semester off had been good for me. During those months, I visited UC Santa Cruz -- I'd been there once before -- and thought about transferring. I was still on the cusp of that decision when, one day, I was sitting on the steps of a building at UC Berkeley and I took this weirdly extreme tumble down the stairs that seemingly broke my toe. It swelled up to about three times its normal size, and I was in so much pain I considered canceling my flight home (in what would become a theme, I had no health insurance then, so didn't go to a doctor). I felt like something was telling me to just rest it off, just wait -- as something was still clearly wrong with my body. I had never had bad balance like that. But instead I taped my toes together, white-knuckled the flight (I was never one to go to doctors anyway, a family trait from my mom's stoic farming side), and pursued my goal of getting into Oberlin's competitive Creative Writing major, where I could read short stories and poems instead of longer works and the classes were small and selective like an MFA, and I also staggered my way through French feminist literary theory: its body-focused text became relatable, as did poetry with its stop motion animation of speech that mimicked a sputtering brain. I got highly physically functional again over the next few years, my grades were up (though it took a while to catch up on credits from a low first-year course load) and though never back to my old cognitive self I got good at faking it via creativity and faddish deconstructionism that nicely mirrored my minefield brain. In that era of early identity politics, having a scattered and shattered identity and "redefining labels" held a certain cache, no matter what the source. I began doing more and more cycling through the Oberlin countryside, focusing on body over brain. Nobody would have noticed those subclinical prodrome symptoms since I was able to mask them really well. Oberlin had a very loose core curriculum, though it's a pressure cooker of a school wrapped up in an activist and artsy exterior. Would it surprise people outside of Oberlin though to learn I took "bike repair" for credit, even audited a student-taught erotic writing class the semester after I graduated? I graduated in December of 1991, resolving to walk at commencement in May of '92 and plan out the future with my friends, then nearly at the top of my game again. Nearly twenty-five years later, I have literally missed every single reunion -- high school and college -- along with every single wedding, and every single commitment ceremony, and every single funeral -- that has happened during these last 24 years (though I managed to listen to my Grandma's funeral on a speaker phone, crying in solitude in a small room). I have been stranded on the East Coast for over 17 years, in literal exile, too ill to travel home again to Illinois (my family pretends this is a choice), or to pass through Oberlin on the way. That's how disabling ME/CFS is. It's exactly what Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University, said when he described it in those early years as "[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades." It is shockingly disabling, and while I can't name the exact hour I got sick with the ME/CFS sudden-onset "flu," I can name the weeks: right before Oberlin commencement of 1992. Continue reading

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