Ten years ago was when the illness descended. Ten years is a long time to realize was ten years ago.
My birthday had been a few weeks ago or so; I don’t remember exactly, but still April. I think I had felt sick around then, but a normal sort of sick: some stomach junk, sinuses, the raw sandpaper feeling growing inside-out in the throat. Minor cruddiness; usual annoyance. Spring was grey and loping, subdued and cinderblock like the university basement where I worked part-time. I remember being in our house and that the kitchen was clean.
Now, far away from it, memory is fragmented: starting in the stomach with shooting, tearing pains as if layers were being peeled. Electric starbursts in the large muscles of my legs and arms, arcing lances through my chest. Something was wrong with breathing–some inability to inhale properly, or as if the air itself was empty. Something pulled inside my head, tightening my scalp. I went to bed and have the clearest memory of lying with sun streaming through the sliding glass door, reading a book on the history of Wal-Mart (of all things) that was almost too heavy to hold, stomach and legs full of burning electricity.
I had never felt anything like this. I had been sick before: the worst was missing the first weeks of eighth grade due to mono so severe I lived in the bathroom, unable to eat, vomiting mucus. This was much worse and a different character of experience. The sickness itself was sick, cut through with garbled sensations and pain that made no sense. I didn’t know how to describe it.
Doctors were suspicious. My Group Health HMO doctor–a physician’s assistant who had always been affable if moderately disinterested–doubted my complaints without saying so much. He was reticent to run any sort of tests but ran a few basic ones: blood tests, other trivial ones I don’t remember. These would come back normal.
I got worse over the next week. More pain in new places, all with the same burning, congealing feel of electric ashes. Something seared just inside my skin and the whitehot rays of pain went into my knees, through all the joints in my hands. One night I had an overwhelming urge to get to the bathroom. I was crossing the kitchen and remember being on the floor, my wife calling after me. I couldn’t move aside from flopping upwards like a fish with a broken spine.
The PA hooked me up to an EKG, ran some traces, didn’t see anything concerning. He was far less concerned or gripped with urgency than me. Maybe an internist, he thought. They would contact me with a referral.
April 2002 had nothing to suggest it would be in any way different or extraordinary than the years before. I was working part-time after leaving the dot-com I’d been recruited to. I was no longer wracked with anxiety or a sense of failure over turning 30. My marriage, always troubled, had stabilized. Nothing wrong with the house four years ours; no issues with money. She was all right with me taking time to write, even though I felt guilt as her own job was so demanding. All normal, adult things until I woke up one day and the universe had changed.
For the next year I got sicker. My mouth burned and filled with sores and glop. My hands shook and my feet stiffened to the point it was difficult to walk when first getting up. The pain and weakness continued. It went in my mind: my vision blurred, my memory became terrible, my ability to concentrate and understand anything of any complexity markedly degraded. My part-time job of copying tapes in the university basement became excruciating and exhausting, my hands barely able to close on the tapes, my mind fogging and the world spinning as I moved to tend the machines. My intestines coursed with electric snakes and eating was no pleasure, giving hours of gurgling pain, warped taste, and pain of anything touching my tongue or roof of my mouth. It went in my muscles, joints, tendons. By early 2003 it was hard to walk, and short distances were exhausting.
Fear and anxiety were the worst. I remember realizing both were stronger and more present even than the darkest days in high school. I went to King County Public Health for an HIV test. There was nothing else I knew to test for, and if it was somehow positive I wanted the result to be anonymous. I remember clearly the tiny, white-painted cinderblock room where I had the blood drawn and to which I returned a week later. Big posters with tempra-colored happy dinosaurs encouraged vaccinations for the niños. Wedged between a desk and a grimy window I sat in a bent metal chair, watching the door, realizing that when it opened, whatever happened, things would be different. The door opened and the big-boned, kind white woman edged in, holding a manila folder–what will she say, will she–I wonder how many times she’s done this. She had a perfect, neutral, encouraging tone and told me it was negative. I don’t remember what else we talked about. It was a hard day.
Group Health had nothing to offer. I saw a series of internists who appeared to have gone to schools that advertise in the back covers of comic books. I saw a urologist, neurologist, dermatologist, rheumatologist. I had diagnoses of Guillain-Barre syndrome, Reiter’s syndrome, and some others I don’t remember. Nobody had any treatment or ideas, not even the rheumatologist, whose discipline is generally eager to pump people full of steroids and metabolic poisons. Everyone looked at me like I was crazy or desperate for attention. I wondered what they were writing about me.
I met the cruel truism that it is the sick person burdened with all the tasks of getting well, the first of which is figuring out what’s wrong. The cruelty of it falling to you, the sick person in pain with the degraded mind, to do all this work makes it no less true. I took their diagnoses and looked into them, following the primrose path first to medical books and websites, then to the medical-esque ones for all those who get nowhere with the straight dope. There are many such people. Are they all attention-hounds, Munchausen types, nutjobs? Some must be, but hardly a majority. I have better things to do than be sick, in pain, struggling to out-think a wet paper bag.
A fight is at least something to do, and I took it up because no one else was going to. I bought books and read them, talked to people on message boards, emailed those who seemed especially cogent and together. I got tips on what to look for, treatments to investigate, doctors to look into. I revisited the uncomfortable truths about medicine I remember from high school and college, when going to the doctor about bad colds and intractable fatigue got it’s just a virus or a similar dismissal. Things were done and not done for reasons of cost, for reasons of not questioning orthodoxy. I realized most doctors follow recipes to stay out of trouble, that there is too much to memorize, that they’re taught to not believe they can do much, that their prime function is pushing pills. In the HMO case, where pills are the biggest cost, the result is nothing is pushed. I wanted to believe I could find help from a doctor–wide boulevards down wild rabbit holes are not far from standard medicine’s narrow path. I would rather stick with science than the endless worlds of multicolored feelings, electric implements, and practiced breathing that struck me as delusions from the nineteenth century.
I did not involve my wife. I did not so much keep things from her as not volunteer and try as best I could to not complain, though given my mildly hysterical nature I doubt I did this very well. I didn’t want to worry her. She had enough problems with work and of her own to not need mine, which it was clear, said experts, nothing could be done anyway. Maybe this was not the best decision and I should have opened up more. But I was as quiet as I could have been and kept most things to myself.
Group Health allowed two annual visits to a naturopath. It was a way that at least split the difference with me: somewhat on the edge but receiving what I would recognize as medical training. I had a handful to choose from and picked one near the UW. The office was cramped but clean, the doctor a compact athletic woman with tattoos and a sailor’s mouth. She was (and is) thoughtful and thorough, though with what seems like a wild streak. She took me seriously, and because of this I followed her leads about thyroid and yeast even though I had no real faith in them being related to my issues. I went on a diet of rice, greens and fish for six weeks to rule out allergens and drank more water. Group Health reluctantly filled some prescriptions she advised, but the antifungals didn’t seem to help as much as the diet’s first week. (I was rewarded with some of the foulest dumps I’ve ever experienced, and then my guts calming down at least.) The staff seemed rushed and semi-professional, but even if appointments were very late, she spent as much time with me as I needed, as she had with all those before me. It was worth being late to be taken seriously.
I continued to look for doctors in what I can imagine looked like doctor-shopping, though since I wasn’t asking for downers I didn’t fit the usual pattern. I went so far as to try some local superstar doctors, all very expensive, none taking insurance. One was kind, if distant; I remember the visit as if drifting down a warm stream, his suggestions and course of action vague. He did suggest a supplement that had a fantastic effect for three days and then abruptly ended. I don’t know what it was. The second superstar doctor was an asshole who sat behind a large desk and at one point accused me of heavy drug use. His nurse supplied me with a packet of elaborate instructions and procedures I must follow to continue seeing him, including using his (and only his) audiocassettes to record journal entries following his rigid format, which I could transcribe myself or pay to have his staff do it. I threw the stuff away and decided superstar doctors aren’t worth it.
I didn’t get any worse, but didn’t improve either. I took handfuls of vitamins and supplements and plowed through each day as if I worked at a mine, or in the fields: endless upstream pushing against gravity, sparkling pain, a syrupy confused fatigue.
The diagnoses all fell in the vague no-man’s-land of autoimmune disease. Looking into this deeply was more hopeful than not, though not if I pursued standard treatments–the rheumatologist’s cortisone and worse. The book The New Arthritis Breakthrough by Henry Scammell was unhysterical, careful, and reasonable. Scammell advocated low-dose antibiotic treatment for rheumatoid arthritis, lupus and other so-called autoimmune diseases based on the theory all were caused or exacerbated by slow-growing, difficult to detect microorganisms that fooled, evaded, or subverted the body’s defenses. The treatment was simple (tetracycline-family antibiotics), safe, measured, logical, and was presented not as a wham-bang cure-all but a process that could take years with many ups and downs and an honest admission that recovery could not be guaranteed.
2003 was one of the bleakest years. I don’t remember the holidays, or New Year’s. I don’t remember any news, or successes, or pleasant things, or even unpleasant things. The pain and difficulty was a constant and consistent static making itself known every waking moment. I remember a call to a friend moved back to Texas who was also jobless on how to save. (The best I’d come up with was switching to online billpay, saving stamps.) I got up, went to work, came home, went to bed early, slept fitfully. Reality was subsumed in a low-grade anxious vibration. When the Space Shuttle Challenger disintegrated on re-entry, I learned of it by turning on the TV. It was a habit I’d gotten into after 9/11, to see if anything terrible had happened. Outwardly, aside from some rashes, nothing had happened to me. But I was just as different and changed as the rest of the world.
I became that patient with the file folder full of Xerox copies and books with Post-its sticking out the top. I took it with me to the Group Health PA and did not beat him over the head with it, or even open it. I said I wanted to try minocycline as the book described. His hand held the pen over the thick phone book my chart had become; he did not look at me and listened. Then he said something like: sure, I don’t think it’s a problem. As he wrote the prescription I felt a sense of triumph and release as big as graduating college.
The naturopath had heard of antibiotics used this way, though I don’t remember if she used them. (At the time, naturopaths could prescribe very few drugs in Washington. Now they can prescribe anything but downers and cancer drugs.) She advised taking them an hour before or two hours after meals and with some supplements to increase absorption and penetration deep into tissue. I shuffled my supplements around, dropping most. I walked as much as I could. Running every night, as I had for years previous, was far too much.
Minocycline comes in real capsules, half grey and half white. I arranged my schedule around them, taking a vial to work to take one mid-morning and just before leaving, during the empty-stomach window. The pain in my feet, the burning in my mouth and lungs, the blurry vision held. I took the pills, with the water, with the supplements, and waited.
For reasons I can’t remember, I stopped taking them. Maybe a Group Health doctor said something that spooked me, or I lost nerve, or doubted. I wonder what would have happened had I continued, where things would have gone, at what rate. But there’s no way to test the abandoned past, and am working to give up wasting energy.
In 2003 I decided I couldn’t keep copying tapes part-time. Even if I was sick I had to contribute more, be something besides sick and unable to enjoy anything from pain and anxiety. Video production, which I’d meandered in since dropping out of grad school, had poor prospects in Seattle, and it became clear I would forever be beating my head against that wall. One less wall to beat my head against was welcome, so I decided to retrain in something, something computery, since I’d always been the computer guy at jobs. I went to DeVry for exactly a week: when the dean told me that, of course, there were no job prospects with an engineering degree, I got my 90% refund. (I remain thankful for his casual remark. The work was far too hard for me.) I looked with greater care and a cheaper eye and thought a generic helpdesk/web development certificate from community college was the best bet. I started classes at Seattle Central Community College in September 2003. I bought a pillow to sit on, the joints in my hips too tender to take the school seats. I could barely concentrate, came home exhausted after class and then work in the afternoons. Everything floated in a hot, sandpaper fog. I bought my books on half.com and kept going.
Around the holidays in 2003 I went on the antibiotics again. I don’t remember why, exactly, or even precisely when, the best I can remember something about needing to try something, and this being the only thing. The grey and white capsules came with me every day, taken at water fountains or from a sport bottle one hour before or two hours after eating, the two time windows anchoring all other events. I always knew what day and what time it was.
Only in retrospect could I detect improvement. Quarter by quarter in school I would realize I no longer needed to carry the cushion around to sit on–normal chairs were fine. I could type and hold a pen for longer periods without pain. The stinging and burning under my skin seemed less, and it was easier to learn and remember. The change was imperceptible and only apparent long after the fact. I didn’t realize anything was improving until forgetting the chair cushion one day.
This was my life. For moments upon waking I was conscious of a painless, floating state, and then waking would bring everything back, and it would be grey morning again, time to ease out of bed, get my legs to work, gen up to focus with the background unvoiced worries of will I ever get well, what about money, this is not fair to her. I began to forget what it was like to be well. I had phone calls with Matt and my friend Paul on what I was going through, guilty about dumping my state on them but hungry for something I felt they could offer. I asked my parents for money. My mother enraged me in calls by always ending with stay well. I saw the naturopath who had nothing to really offer. I didn’t have lab tests or any other reasons to see the Group Health doctor and so never went in, though I always had the unconscious worry my refills would not go through. People online talked of buying some antibiotics at feed stores. I went for walks, rode the bus. The world was grey.
In early fall 2004 I persuaded my wife to change health insurance away from Group Health to Regence, opening up the doctors we could see. I’m not sure why I wanted to see the doctor I’d found: maybe he was recommended by someone local, maybe because he was an osteopath and I had found that school more pliable and sympathetic in the past. He worked out of his house out in the Issaquah wilds, back a huge converted den with wood paneling and broad windows. He kept his implements in a Sears tool chest. Same thing as one of those doctor cabinets, he said, just a lot cheaper. His expansive rec room office reminded me of something out of middle school.
He took a long history, poked around, drew some blood. He said something about it being a fibromyalgia-type thing, which he felt new research was caused by kidney problems. He advised some testing not covered by insurance that would supposedly show how healthy my cells were from the inside out. Whatever. He’d call me with results.
His excitement was audible on the message. At last, out of all the tests that had been normal, he found some that weren’t. They showed I had something called polymyositis. I needed to come in.
Polymyositis is a supposed autoimmune disorder where the muscles, connective tissue and skin are targeted by the immune system. The testing had found elevated levels of this sort of destructive process. The usual treatment was steroids, though the alternative sites and books I’d already researched listed the same antibiotics as effective. I assumed the good doctor would apply his knowledge of antimicrobials, but instead he wanted the steroids. I was hesitant but he assured me how mild the stuff he used was. I consented to one injection. In a few hours I felt as if I’d regressed a year.
I hadn’t seen the naturopath in some months, having given up on her as much as the Group Health doctors, but as I felt every symptom coming back as if I’d just woken up that morning in 2002 I could think of no course more fruitful. When I got in to see her I all but yelled at her–this guy found a diagnosis and just made it worse, and why didn’t you test what he did? She yelled back. People on the sidewalk must have heard us.
What exactly happened I don’t recall, but a course of action must have been formulated. I had a working diagnosis at last and some test to at least monitor. Antibiotics were adjusted. By Halloween I was feeling better, more or less back to where I’d been. Of the two tests, the scarier result was back in normal range (and has not been abnormal since), while the other dropped significantly. I never saw the other doctor again.
Christmas 2004 ended school for me. The holidays felt a little like those in high school or college: a little happier with the sense that something had been earned. I looked for work on New Year’s Day and found a contract job designing a Microsoft website. Others were horrified at how little it paid, but I was happy for anything that was a Real Job. The anxiety of having a new job was extreme: now I had not only my own doubt but the fear I’d not understand something, be too tired, too distracted by pain, have a seizure. Working a job in the belly of the beast and not knowing to take it less than seriously weighed on top of the weight, but winter turned to spring, then summer, then fall, and they kept me around.
Getting the job in January I checked in with the naturopath. She changed the minocycline to doxycycline, thinking it might be better. Late spring we changed back and I noticed marked improvement. That summer I realized I didn’t feel so bad. Still greatly fatigued, still twinges, still the rashes and burning, but there were breaks. Down in the bowels of the parking garage one Friday after work I realized I could remember, a little, what it was like to be well. The garage was dark and silent but I felt a thin, hopeful filament in the fluorescent light.
With occasional terrifying retrenchments, I kept getting better. The retrenchments were fewer, less severe. The worst were my own worries when lab tests were less satisfactory, my fear it signaled a return to the low cell of 2003. The fatigue never left, and was in some ways the most troublesome. Sleep remained poor, but I started writing again.
After a time, I allowed the tentative, equivocal victory of considering myself essentially well. One doctor I rarely saw to refill the meds the naturopath could not had told me he’d seen lots of people become gravely sick with some incomprehensible malady just gradually work out of it. Nobody knew what it was, why it came, or why it left. I felt I could be happy with that.
Late summer 2009 the naturopath suggested some new tests. She had a number of patients like me, she said: very sick, a garbage can diagnosis (chronic fatigue, fibromyalgia, other lingering but indistinct syndromes), slowly better and now mostly well, but never completely. The leaden drape of fatigue could still make the most timid day a challenge. She’d been to conferences and done some reading, and her hunch had proven with her other patients she’d tested so far.
The tests were for Lyme disease. They were pricey, and given how little usefulness tests had provided to this point, I hesitated. Insurance would cover a little, it turned out, so I went ahead.
A week later we were in Montana, escaping a few torturous, rare Seattle days of 100-degree heat. The tiny motel at Glacier National Park’s edge had overpriced ice cream and t-shirts and the thinnest edge of cell reception. Back from hiking, a voicemail came through. Standing on a rock and plugging my other ear, I heard the office assistant report the test had come back “very positive”. In the tiny room unchanged since the mid-Fifites, I stood in the screen doorway and felt a mix of relief and exasperation. I’m more or less well, and now they tell me.
The test changed nothing real: I was well, working in a new field, living in the city, the worst days thin memories I made a point of not dwelling on. The masses of papers and files still chronicled my normal standard tests and doubtless doctors’ notes about an agitated patient with no obvious symptoms. Outwardly I looked the same as I always had, and inwardly I felt the same mostly-certain wellness. But now I had something the bureaucracy must accept, that all the piles of rules and gatekeepers could not push away. I had my own piece of paper. I finally had a test I passed.
The test came back in August, 2009. I had been solidly well for over a year: no interludes, relapses, weird episodes. I swam regularly and went for afternoon-long walks and day hikes. The naturopath changed my meds around and I took then with a confidence I never had before. I had no side-effects, no dramatic response, but some things got gradually better: joint pain, soreness in my feet, rashes. A fog I didn’t realize I still suffered from lifted, and my thoughts were faster and more complete. My vision sharpened even further. I noticed vitamins seemed to work better, which was demonstrated when I forgot them.
I keep up the vitamins, having returned to a dedicated, or perhaps hypochondriachal, attention to them learned from my mother. I read Linus Pauling’s book on vitamin C and take large quantities of it, and I wonder things would have gone had I read the book at its 1986 appearance. I wonder other things: was the severe mono that kept me out of the first month of the eighth grade, after which I never really felt well, the start of this? Could I have had Lyme all through high school, explaining my blurry thoughts, inability to remember anything, extreme anxiety, knotted stomach, breathlessness with any exertion? Or did it really come on in April 2002, a ton of bricks with no name?
Back in September, someone observed that 9/11’s decadal anniversary was significant because it marked the point at which we could begin to forget. We have forgotten volumes already, most so the raw emotional punch. A formerly solid world twisted to surreal threads, warped planes, sinuous echoes. Here in the future, that past is dreamlike: somehow sensible but the gravity is wrong. It was all so sharp then; now things have blurred, gratefully.
Now this may be happening for me, for being sick and other things. The memory is indistinct and has the same feel of watching old VHS from high school, kept in a box, pulled out on moves or purging binges. Remember, remember? Well…maybe. The farther away things are, the less I’m sure what I remember. Cops and neuroscientists know memory fades, is malleable. I know I am not there now. I know it is better to be here, that I am more well than I think.