Health - Reversals of Fortune

It may seem strange that even with all I can do now—doing backbreaking work in the garden, going through college classes, going back to work—that I still consider myself disabled. It seems strange to me sometimes as well, but I keep reminding myself how easy it would be to do the wrong thing, run into some misfortune, and find myself sliding right back to square one or lower. All it takes is a few days of short sleep and it's all too easy to remember how fragile this good health really is.

People who meet me now have no idea I was ever sick, and when I mention some of the places this road has taken me, they seem to boggle. It's been a long, strange trip, to be sure, and if you're making your own journey or know someone who is, this history might shed a little light on one person's experiences.

I first got symptoms of burnout in high school, though we thought it was something akin to mono; I would lose my appetite, much of my energy, and, oddly, my sense of taste. It happened several times, and always went away in a couple of weeks. We thought nothing of it. Freshman year of college came and went, and I was exhausted for three weeks after break started, but that was somewhat expected; I was majoring in physics, and getting a pretty good GPA at a demanding school. I had my grad school all planned out, and a career in scientific illustration was calling me.

It was the middle of sophomore year, when I was 19, that the exhaustion set in. I remember collapsing several times that year, when my body would abruptly stop working and I'd barely be able to crawl somewhere I could lie down. The worst of those episodes lasted four hours, filled with numbness, paralysis, and creeping terror. It's when you try to move a finger, and after five minutes of trying finally you get an uncontrollable twitch, that you really start to panic. The paralysis always went away, and after a few more times I was able to resign myself to it. But it really was the beginning of the end.

By the end of that year I was totally spent, and my energy just didn't come back. I had no appetite, I slept most of the day, and when I was awake I was tired and listless. A visit to my doctor brought a diagnosis of depression and a prescription for Prozac; armed with this, I went back for junior year.

By October I knew it was hopeless. I couldn't drag myself out of bed for morning classes, and even when I was there I couldn't concentrate. I dropped one class, then another, and finally, after the personal triumph of holding my concentration together for a full forty-five minutes to take an exam (I got a C), I pulled out to go home. It was heartbreaking for someone who loves school, is never happier than when taking a full load... and I had a feeling I wouldn't be back.

Once I got home, I had two weeks when I tried to reconnect with friends to keep from dwelling on my failure. One such attempt netted me a good friend, who turned into a romantic interest, who turned into a caretaker as well as lover when I finally collapsed for good.

I recall very, very little of the next nine months. My mind and memory were gone, exhausted; I moved through life in a dream, going where my SO led me, taking my pills when he prompted me to, picking up undemanding hobbies like crochet when my vision and short-term concentration improved enough. I tested my mental stamina when I could, playing games like MahJongg and Sherlock, Bust-A-Move and Puzzle Fighter, watching my focus hold for two minutes, then five, then fifteen. I'm told of several things that happened which I have absolutely no memory of, significant events like a friend from Washington flying down for a visit. I was there, but I wasn't.

The return of memory is patchy and oddly compressed. I know that I did learn to drive at some point the following summer, and had to stop for a while when my reflexes got too bad. My color vision was gone, an odd and frustrating thing for an artist who prides herself on her color-matching skills; I couldn't tell the difference between black and dark green no matter how hard I tried. But after a while, I figured I was doing well enough, and I gave in to my driving urge to go back to school.

The University of California Santa Cruz is a beautiful college, with a unique feel and curriculum; it's an indescribable pity that my memories of the year I spent there are bitter. I still couldn't take the demands of full-time school, though I desperately wanted to, and I dropped out of several classes as I fought to keep myself going. In the middle of the year I went through a full identity crisis, suddenly losing myself so badly that a wonderful friend drove down from Fremont to fetch me up for the weekend because I couldn't drive. I had realized I no longer knew where I was going, who I really was, or even my favorite color anymore. It was a long few weeks after that, of reminding myself of simple things, such as the fact I like to keep fish. (I still keep them; at the time of this writing two bettas are snoozing on the shelf above my head.)

I pulled through it, though it marked a total change in personality. For those who follow such things, I changed totems from Owl to Cougar/Hawk, and my disposition gradually revealed itself to be much brighter than it was before; I am now an optimist, with a generally cheerful mood, a sharp contrast to the depressive, somewhat cynical realist I was up to that point. And to me, I was different, as if I had been recreated at that point with the memories and life of another person.

I finished the year of school, and turned to the possibility of simply working. I had moved into an apartment with my SO, and went from this job to that as I tried to figure out what worked for me. Retail drove me batty, and I was a night-owl, so I switched to night security work and patrolled hotels for maybe three months. Somewhere in all this, a chance comment led my mother to realize that I was in constant pain, though it was nothing unusual to me: it was the same full-body burning that had slept below the surface all my life, raising its head when I was under stress or short on sleep. I distinctly recall reaching for it, testing its level (and thus my level of fatigue) when I was ten or eleven, and it was natural then.

But she told me it wasn't normal. She found the web address a friend had given her, the site for Immune, and after a bit of research I went to my doctor and asked him whether I had fibromyalgia, as I indeed had tender spots, burning pain, and fatigue. And my doctor said he honestly couldn't test for it, but we'd try some treatments and see whether they worked.

They didn't. I have some interesting and hair-raising lists of side effects for the medications they put me on, mostly antidepressants and mild drugs of other sorts. When I put my foot down—I hadn't, as I pointed out, had sleep problems until I took some of these medicines they prescribed for sleep problems, which can be a cause of fibro—my doctor and the HMO threw up their hands and sent me to a pain clinic to learn coping skills.

Then one night before work my legs simply refused to respond. I hated to quit so abruptly (my supervisor was a kind sort) but I could barely stand up. It was the end of the last of my dreams for a while, as I crept home again, my SO moving fifty miles away shortly before we parted ways.

I spent a week or two in bed, the stairs down to the kitchen a formidable obstacle, and the pain grown to a dull fire that never faded. My computer and ICQ were constant companions, and I still managed to keep up on the live-action game I was in, though I couldn't stand for more than a few minutes. I met another player there who I spent time with, and after a few weeks he confessed to an attraction; I found that simply being with him eased the pain, and we became inseparable. (We still are.)

Nick was a bastion of sanity during the following years, and I moved in with him at his parents' house in an effort to take advantage of his pain-easing abilities. My paralysis was still a problem, coming on when I would sit down or otherwise relax, and he would help by bringing things to me or helping me walk. One time I was forced to walk from the car to the house through an episode, coaxing my legs into a jerking motion that mostly held my balance... but it wrenched my back, and between that and other events my lower back became a severe problem. I didn't realize how severe until my feet started to go numb.

Back to the doctors again, as my condition worsened to the point that I rented a wheelchair for a weekend convention, worried that the numbness was a sign of damage and unwilling to add to the problem by standing or walking much. I saw two doctors, one of whom shrugged and said nothing, the other of which ran a tool along my foot, asked me whether I felt it, and (when I did, dimly) then narrowly avoided telling me to my face that I was lying. I was in a near-panic, convinced that I had a spinal injury and was on my way to paralysis without proper treatment, resigned to buying a wheelchair and using my disabled placard. The pain was crippling.

I spent quite a bit of time in San Leandro at the time, visiting the extended household that had surrounded the friend who had driven me up from Santa Cruz a couple of years prior. Rhanda herself had had mobility trouble, dealing with a degenerative spine disease and extra weight, so such problems were not unfamiliar there; she had died suddenly a few months earlier, however, and I felt her loss keenly. In that, too, it was a sympathetic place to be.

Listening to my worries about possible spinal injuries and whether any doctors would be able to help, the head of the house offered me her appointment for the family massage therapist. The practitioner in question had a reputation as a miracle-worker; I confess that I was simply looking for enough relief to get me to the next doctor's appointment. That day was the single turning point for me, and I have two people I will always thank for it.

To hear Jane tell it, she watched me shuffle into her office like an old woman, and walk out like a young one. She realigned my back, restored feeling to my feet, got rid of almost every sore point I knew about, and quenched the burning pain that had dogged me since childhood... in an hour. The sheer absence of the full-body pain was unnerving, as suddenly I was lacking the feedback that told me where my body was. My feet were down there somewhere, but I couldn't say where unless I moved them; it's taken a long time to crank up the sensitivity of feeling to the point where I can tell where everything is again.

The fixes lasted for three days before they started to shift back again. Four weeks later, she again worked at sweeping back the tide, and the blessed relief lasted a little longer. After nine months I was functional; after three years I was pronounced basically cured. My back was strong and pain-free, the burning was gone, my tender points had vanished, and I could walk better than many of my young friends. I've been told repeatedly that being in my mid-twenties, with a body that wanted to heal, was a large part of this miracle... but I know who to thank for performing it.

We discovered, as things progressed, that much of my pain was simply my body's overreaction to misaligned bones, a phenomenon she had run across occasionally. Most people can have bones or joints that are slightly out of place, or immobilized so they don't move properly, and they don't notice. My system, on the other hand, puts up flares, fireworks, and blinking neon signs... especially in one case. In a twist she had never encountered before, Jane and I found that two bones in my upper shoulders (T2/T3) were the root cause of that inflammation that had burned along my nerves since I was in grade school. Even now, on the rare occasion they shift out of place, the burning returns, with a host of symptoms like light sensitivity and unstable boy temperature. (She keeps saying she wants the wiring diagram from when I was assembled.)

While I was working at fixing the structural problems, and looking into acupuncture (needles terrified me, but it's amazing what desperation will do) I was living at Nick's house in Antioch. One afternoon, his mother mopped the kitchen floor using Formula 409, your typical household cleaner.... and thoughtlessly neglected to open doors or windows. Hungry, I went out to fix some food, but after twenty minutes I gave up on cooking and went to lie down, lightheaded. Nick brought me the food, but I was sick with a fever that evening, and slept most of a day.

I felt strange after that, my energy unusually low, but I attributed that to the hot weather that summer. When my face and neck began to itch, it was assumed to be a heat-rash, until Cyndi (of Immune) saw me when I went to visit her and she told me it was a detoxification reaction. She had me wipe my face with alcohol, to get what felt like a waxy residue off... and it immediately stopped burning so much, and I felt better. I spent the next two weeks with an alcohol swab handy, as I began to realize that the waxiness was caustic, blistering my cheeks and neck if it wasn't removed. Over those two weeks, as my body threw out a toxic chemical via one of the only avenues it had left, my other systems began to break.

When I realized I could no longer digest food, I moved out of that house and into my parents' place again, the haven which I had come home to so many times before. It's a very clean environment, surrounded by overgrown greenery and managed by an attitude of "clean enough", lacking the chemicals of much of the rest of the world. And there I began to try to piece my health back together, starting with a digestive system that didn't seem to remember how to work.

That function came back eventually, but attended by several food allergies I still have today. I dealt with the consequences of that single exposure for months, maybe a year, before I felt fully recovered; it had me nearly bedridden again. And ultimately, it snapped an already fragile part of my system and threw it into irreperable chaos. The P-450 detoxification pathway, key to degrading so many modern poisons (solvents, pesticides, even alcohol) into less harmful substances, was permanently broken, leaving my body the choice of reacting horribly to the poisons or their half-degraded byproducts, or storing the chemicals away in fat, a lurking threat that would come out later, sometimes years down the line.

I recovered somewhat, started acupuncture (it really doesn't hurt... though true to form, my body will take the slightest excuse to find pain in things, and that's no exception), and waited. Slowly, strength and stamina came back. Slowly, I found myself better able to deal with stress. I found a physician who ran tests and more tests, the alternative panels and offbeat screenings, and found nothing definite, though I still take a handful of vitamins daily to fill in the minor deficiencies the tests revealed. I stopped taking birth-control pills, my last remnant of the drug trade, and my hormones very slowly started to normalize. (Two years and a couple of supplements later, I have close to normal sexual hormone levels, for the first time in maybe a decade.) My health came creeping back, bringing a better tolerance of most chemicals, and energy levels that are higher and stay that way even under minor stress and major exertion.

I still see Jane and my acupuncturist regularly. I'm back in school again, working my way up to full-time, or part-time with a job. I can hoe a 30x30 area in one go, and wield a shovel and pick in our heavy soil. Obviously, my efforts worked, though I do still have intolerances—I can't eat wheat, antibiotic-tainted meat, or anything cooked in tap water, as well as unfiltered water itself—and Formula 409 took me down for four weeks when I was exposed to a tiny amount six months ago. I can go to the mall or clothing stores, tolerate year-old buildings and cars with ease, and barely even get a headache from most fragrances these days. Success, though not unmitigated, and not guaranteed for life.

We have no answers as to what caused all this in the first place; the only event I can point to is the chemical injury, but it begs the question of why a common household cleaner (even one with a chilling safety data sheet and recommended precautions) should be able to injure me that badly in the first place. My system was already stressed to the point of breaking, but we don't know what it all came from. We may never know... and it scares many of the younger people I know when I tell them that I was struck down fresh out of high school and cast into a nightmare of disability, and I don't even know why.

I hope regularly that someone else will have the chances I did, and pull themselves out before they get trapped in the hole I see so many others fall into. Because a lot of people out there get this illness, or the ones related to it, and it progresses to the point that simple survival is a struggle. Sometimes they lose. The chemically-sensitive community has lost many people since the malady first came to light, and we stand to lose many more, some of whom I know by name. And there, but for the grace of God (and friends) go I.