Wednesday, May 25, 2016

How I Turned Up Missing

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.

As Cort Johnson recently described on his blog about "The 25% Disease: Is Chronic Fatigue Syndrome (ME/CFS) Unique In How Many People Are Homebound?," ME/CFS -- especially for the lowest 25 percent of which I am one -- fells people more dramatically and rapidly than any other known disease of the under-65 set. People with many other illnesses can still do things -- work, go to graduate school, travel -- with enough accommodation and support, and those of us with ME/CFS most often simply can't, that's where the line is drawn. "One study, found only an astonishingly low 13% were employed full-time," wrote Cort. He continued, "It was no surprise to see that symptom severity/fatigue/quality of life etc. were all significantly worse in the housebound patients. Or that the housebound have a greater propensity to relapse after minor exertion and are more socially isolated." Perhaps the most shocking statistic, relating to the unique symptom of post-exertional malaise, or "PEM" (exercise intolerance) in ME/CFS, is this one: "The almost complete withdrawal from work in all patients was staggering. Even the non-housebound patients spent only an average number of 8 hours over the past month on non-household work. Remarkably, less than 10% of the patients surveyed were employed full-time and less than 20% were employed part-time." This illness is a life of the tiniest snapshots of participation, followed by cavernous, inconceivably limited months and years. Like any severe ME/CFS patient, I was only able to stagger through some part-time work (full-time of 35 hours a week, with frequent sick days, for a period of only 6 months or so) for 2.5 years after getting sick, and I have been on disability since then. The main job I kept during that "working" period was at a psychotherapy center where I was the office manager and grant writer, and where I stealthily lay down on therapy couches for the 50-minute hours when my co-workers were in session, since sitting up all day was impossible.

Commencement of 1992 was surreal. I have no idea who the speaker was. I sat near this guy I had dated a year earlier, who was telling me all about his plans to go to Alaska. I had sea legs in a landlocked space. I felt nauseous, had vertigo. My heart was rocketing out of my chest. I was just trying to focus on how I'd get to the podium to get my degree. My plan to immediately depart on a cross-country drive was daunting, but there was no way out. My student health insurance had ended in December of 1991 with my official graduation. Even now, I look back and think what a miracle it is that I graduated at all. I know of other ME/CFS patients who didn't make it all the way through college because of this disease. The ME/CFS "flu" -- that Alice in Wonderland meningitis-like disease that is nothing like a "flu" and involves tumbling places so unfamiliar there are suddenly no words to describe the symptoms -- had waited on me. In January of 1992, my partner had spun out on the ice with my friend in the front seat and me in the back, all of us driving head-first into a guard rail over an overpass, me flung forward as the only one without a seatbelt. Afterward, standing dazed in a parking lot nearby, contemplating that we'd almost died, my head felt like it was packed with cotton and I just couldn't think. Over the next few months, I had worsening vertigo and other symptoms. But it wasn't until that May of '92 that the ME/CFS "flu" hit -- and it was a night-and-day collapse, right then in the moment of watching my friends disperse scattershot around the country. That same partner, that same friend, were the people I was about to drive cross-country with.

The morning after commencement, one of my Oberlin housemates was putting my bike rack on her car. She was one of two housemates I had from Western Mass., where I'd later end up. "Hey, that's my bike rack, I need it!" I yelled. "I know," she said angrily, in what seemed like elite rage suddenly separating the haves and not-quite-haves at Oberlin again as we departed, and continued to load her bike onto it. I don't know what that bizarre gesture was as I thought we were friends, I just remember it, as if it was the very moment the world turned hostile and I was too sick to fight the distorted, eye-toothed maw that was chomping down as I left that bucolic town for the great outside. A few months earlier, I'd been sitting with two friends on the lawn of the lush, green square that centers Oberlin, talking about how we'd like to bicycle through the Southwest together after graduation. Instead, I was going to drive it, but not until I literally wrenched my bike rack from the hands of someone who had a future. I still have that bike rack, and the same Trek touring bike -- artifacts from my able-bodied life I just can't let go of, since they symbolize hope to me of a cure that still hasn't come. By the time I got to San Francisco, any attempt to ride my bike resulted in doubled-over nausea that took hours to relent, or searing chest pains that likely indicated the cardiomyopathy Dr. Martin Lerner later found in most ME/CFS patients via heart tissue biopsies.

My Berkeley friend -- also on that cross-country trip to San Francisco -- later wrote in a letter for my disability hearing, "When I first met Peggy in the Fall of 1987, I was struck by her warmth and energy. She was very physically active, often leaving me in the dust while biking, swimming or doing aerobics. She was also extremely sharp in academics, while fostering her creativity through the arts. She had an uncanny ability to read over a page of information and instantly memorize it. . . . She also never seemed to get any of the myriad of cold and flus that wiped out the rest of campus." This friend would soon have the closest lens to my collapse. "Peggy's energy level started to diminish noticeably in the Spring of 1992," she wrote. "She often felt weak, and faint, and had begun to complain of severe neck pain a couple of months after a car accident that she, another friend, and I had been in."

The three of us went East first right after commencement -- to see their families, to visit my friend at Brown -- and I lay on her floor in Providence, completely allergic suddenly to her pet bunny, sneezing and miserable, as I think I remember her telling me I should wait to go on. I didn't know how to do that. My traveling companions got there to meet me, and off we caravaned. We stopped in Illinois to see my family -- again, a checkpoint, I could have just stayed but didn't. My travel companions loved Normal, Illinois (my unassumingly-named hometown) -- they had both seen it before, found my family both quaint and lively and eccentric -- and my Dad bought us two old-time CB radios from Radio Shack so we could communicate between the cars, a worried look on his face. My divorced Dad wasn't really worried enough though, not enough to say "I'll take care of you" or something. There was no promise from him, no culture that supported children returning to live with their parents after college (for a Valedictorian, it probably would have been unheard of). That Calvinist, Protestant-work-ethic culture was pushing me onward. I smiled through our departure. We divided into our two cars, rotating driving shifts with one person resting, our CBs blaring, making up silly handles along the way.

We planned to parallel old Route 66, and take I-40 through the Southwest. We rolled out the huge atlases at every stop. We stayed at cheap KOA "Kabins" to glamp our way across the country, but by the time we got to Amarillo, my meningitis-like symptoms were off the charts, and it marked a period of extensions and trip delays as my partner and friend grew increasingly worried -- yet at our young age, with my prior health as they knew it, nobody expected my "flu" to last. I had, notably, the classic symptoms of encephalitis or meningitis though, not really a "flu" and it felt like nothing I had experience before, nothing I had language for. As they hiked a canyon, I just recall how bright and insanely piercing the light got, how close to blacking out I felt, how dehydrated I seemed despite hydration, how much my neck was killing me. They left me on a rock, splayed, while they hiked. This would become a theme for the rest of the trip. I had called my Dad from Amarillo, and he offered to pay for a hotel room for a night or two -- I think it ended up being two -- while I tried to feel better. He never seemed able to link these glimmers of insight together, to see the gestalt of how sick and disabled I already was from that moment on. My friends saw it though. In that letter for disability penned in January of 1996, my friend wrote, "Peggy was fairly incapacitated throughout the trip from a combination of headaches, nausea, and flu-like symptoms.. . . At the time. . .we. . . encouraged her to push herself to keep up. At some point during the trip it became clear to me that she wasn't just being lazy or tired, but that she was physically unable to keep up and was already straining herself in a dangerous way. By the end of the trip, she wasn't even attempting to go on hikes with us, but would rest at the bottom of the mountain."

I remembered the muddied graywater of rest stop toilets, something I'd never seen before but noticed because of the need to rest my forehead on a toilet bowl, nauseous. Rolling into New Mexico, the clouds were a high hat on one side and we drove back, back into a state park that seemed uninhabited, until we arrived at the edge of a giant, pristine lake. At this point, storm clouds were just rolling in, touching the water, and we waded in quickly before the sky erupted. The storm was so astonishingly beautiful and yet, the building pressure in my skull right before that had been so palpable, the contrast of hot and cold as the goosebumps stood up on my legs in that perfect water.

In Albuquerque, staying with someone my friend knew, I was suddenly allergic to everything and the light sensitivity was worsening. My throat was raw with pain. One day they all went to a pueblo and I lay on a futon covered by a tapestry, taking an echinacea tincture the kind host had given me, though it didn't help even marginally. It was, however, a sure sign of how transient we all thought my illness would be. Still, we had a serious conversation at that point about whether we should just stay in Albuquerque and settle there, instead of moving to the Bay Area. But we continued on, and somewhere near Jerome, Arizona -- an old mining-turned-artist town high up in the mountains -- I was pretty sure I was going to drive off a cliff because I just could not see past the glare any more and was practically steering on faith. At some point, there was a feeling of deja vu when the three of us were in a car together, temporarily, driving away from our latest campground, when my lover had what's known as "brake fade" on the mountain and her brakes went out and she steered us precipitously to the bottom. I remember a gas station that seemed nearly swallowed up by the surrounding desert, a man with a sombrero outside, and how I just didn't know how to keep going.

We drove through the LA area where we stayed with my sister's boyfriend, up the coast to Berkeley, where we ended up in the same house my friend and I had stayed in before. We spent a week there, apartment-hunting in San Francisco which proved harder than expected, and finally settled in the Inner Sunset. I was devastatingly ill, really too sick to work even a day at that point, and yet I managed to start a job at a health food store in the heart of the Castro, where gay men were in June of 1992 dying in droves. AIDS deaths in San Francisco in fact peaked during my years there, and AIDS was so omnipresent in the Bay Area right then there really wasn't room for another emerging illness (by the end of my time in San Francisco, I lived on Castro Street, just over the hill in Noe Valley). According to a recent article in the San Francisco Chronicle, in 1981, nine people died of AIDS in San Francisco: by 1992 when I arrived, 30 people were dying each week. In that health food store where HIV-positive men would come in waving special discount cards to buy immune system supplements and weight gain powder, I was too sick to do my job properly and only lasted a couple of months, though I tried to hide this reality from even my HIV-positive boss, the one who had campily exclaimed "you could run for President too!" when interviewing me and seeing I was from Normal, Illinois, since Bill Clinton was currently running for President and pushing his Hope, Arkansas hometown angle in a time of plague-ridden despair.

My friend later wrote in that letter, "it's clear to me that Peggy was still trying to deny the severity of her illness, she would continue to try and keep up, going on bike rides or hikes but she was just not able to do it, experiencing shortness of breath and heart palpitations. She took to sleeping more, needing to lie down at times throughout the day, and taking frequent rest periods when out on walks. She often felt nausea, and weak and disoriented. Her mental sharpness seemed to be dulled as well. For as long as I had known her Peggy was always reading challenging books about critical theory and a host of other topics, would actively engage in heated discussions, and was always impassioned by her writing, but this interest and level of intensity was also decreasing." She added, "Peggy found it difficult to socialize at this time because of her growing list of disabling symptoms, and I started to see less of her. It was often too exhausting for her to get in her car and drive the fifteen minutes to my house."

These last lines are particularly poignant, as I became "the missing" so rapidly then, simply losing my ability to connect to people as any social commerce became so exhausting and a fifteen minute trip was suddenly like a cross-country drive. The more I disappeared due to necessity, the less people witnessed how gravely ill I was. And things, from there, simply got worse. That friend noted her own lack of understanding, kindly, in her letter -- but most of my friendships just quietly popped like bubbles in the margins. "Hindsight is of course always enlightening," she wrote. "And I wish I could say I was supportive of Peggy during this time as she struggled with the growing awareness of the severity of her illness, but I wasn't. Being a young, able-bodied person, . . .it was incomprehensible to me that she was actually sick and physically incapable of being as active as I was. She often pretended or down-played her limitations, or made excuses as to why she couldn't socialize."

In 2010, a family member ranted to a Bay Area friend visiting me in Western Massachusetts, "Peggy was NOT disabled in San Francisco!" My family remains in denial about just how rapidly I was stolen away there, lost to retro communiques over Radio Shack CB radios that dissipated into the desert as I desperately tried to mask my symptoms and still could for awhile. Of course, this kind of familial response was typical of the families of the AIDS patients I saw in San Francisco who wasted so rapidly into bones. A recent article in Out, that profiled a luminous woman named Ruth Cocker Burks who cared for hundreds of men dying of AIDS in Arkansas in those lost years of the '80s and '90s stated, "Burks estimates she worked with more than 1,000 people dying of AIDS over the years. Of those, she said, only a handful of families didn’t turn their backs on their loved ones." My friend came to terms of the reality that I couldn't even travel across San Francisco over twenty years ago without significant relapse, a harbinger of the longer and greater illness crashes to come that would soon become exponentially disabling and permanent. She wrote, "I took it as a personal insult that she couldn't push herself to come and visit with me, when really she just simply couldn't."

My friend's words from twenty years ago are still so haunting, given what I've lost since then. Sudden illnesses are often described as pathogenic "insults," but mine was subtly reframed by others including often by my own family as a personal affront (one of their favorite repeated lines to me in the past decade was "I believe you believe you can't move" about my inability to get back to Illinois) just as AIDS was in its early years without cultural understanding when AIDS patients, like ME/CFS patients still to this day, were bullied over so-called "lifestyle choices" and treated as pariahs for their "choices" or "beliefs" rather than seen as victims of a horrific plague. This language of lifestyle still permeates the research and government response to ME/CFS, as patients organize protests full of empty shoes to connote those of us too weak to ever consider protesting. The damage for my illness remains swept into the desert sands that became scalding mirrors in my infected optic nerves, my former life taking on a mirage-like quality. I revisit the Southwest landscape and San Franscisco in my mind in a flashback format -- though I'm too sick to go back to either. I have recurring dreams of suddenly parking my Airstream in a San Francisco driveway, surprising everyone with the end of an epidemic. These images haunt me, from those places where I made those final, critical choices that likely irrevocably shaped my future -- and in them, I'm trying to hide how sick I am, to change the future. In What Her Body Thought, Susan Griffin wrote, "What you are able to say or even know about your own experience depends in some mysterious manner on the attitude of the listener. Truth comes into being by call and response. The curiosity of the listener is like a magnet, pulling testimony from an inarticulate obscurity." (p. 285). I once could have just stayed put and tried to heal my brain, but I didn't do so because I had no words for my surreal descent, and that "attitude of the listener" morphed into practical lack of treatments and stable care systems going on decades now.

Without curiosity, and with a fixed attitude about "lifestyle" or "choices" that insists on metaphor versus clinical research, the truth of an illness can seemingly stay suspended nearly indefinitely in that "inarticulate obscurity" that ME/CFS remains in to this day. Just this year, Dr. Brian Walitt was named lead clinical investigator for NIH’s intramural study of post-infectious ME/CFS. Walitt has openly called ME/CFS a somatoform illness and fibromyalgia a normal life experience instead of a distinct medical entity, making bizarre hypnotic-spiral statements like "“First let me affirm by saying that chronic fatigue syndrome/myalgic encephalomyelitis are a biological disorder. Research has shown that in every system of the body that has been investigated that there have been abnormalities when compared to healthy volunteers. If chronic fatigue syndrome/myalgic encephalomyelitis is all in your head, it’s only because your head is part of your body.”

As Jeannette K. Burmeister points out on the Thoughts About M.E. blog, "Walitt seems to believe that the abnormalities are being created by the patients’ own thoughts and emotions due to some kind of biochemical mechanism.. . . Saying that one doesn’t believe that symptoms are all in a patient’s head is not irreconcilable with believing that the patient suffers from a somatoform disorder." My family's construct of "We believe you believe you can't __________________ " (fill in the blank with whatever symptom you want to minimize) is pretty much taken right from Walitt's playbook of how to pretend to "believe in" the symptoms while reinforcing it's all in someone's head (it's a line much like the ex-gay ministries "love the sinner, hate the sin" once inflicted on abandoned gay men dying of AIDS). I can't believe people are still brainwashed by these hateful ideologies, but they are. Ruth Coker Burks wants to do a monument for the men with AIDS she helped, reading simply, "they knew they would be remembered, loved, and taken care of." Imagine knowing those things as an ME/CFS patient. This is all that patients, without FDA-approved treatments and viable care more than a quarter of a century into this other devastating epidemic, are asking for on this day of protest.

2 comments:

Unknown said...

Bravo, Peggy! Thank you for telling your story. Yours is an experience not unlike my own. The parallel to Hiv/AIDS is tragic but sadly filled with truth.

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