A (Not-So-)Brief History

2008-07-17T07:21:00.002-11:00

Twelve years ago I awoke one morning unable to lift my right arm. Each time I tried I was thwarted by a sharp pain at the front of my shoulder. Thinking this pain was a latent tree-planting injury from the previous season (even though it arrived in the midst of a long cold winter nearly five months after the planting season had ended), I assumed it would eventually resolve itself if only I was careful and avoided opening doors and playing pool. After the subsequent planting season commenced, I adapted my tree-planting style to ease the pain in my right shoulder by alternating my shovel arm between right and left. This decreased my productivity significantly, but not my pain. When the pain persisted through that long and unproductive summer, I saw a doctor out in British Columbia who told me it was probably just bursitis. He recommended cortisone shots and I respectfully declined. I would conquer this without medication, I thought. As suddenly as the pain in my right shoulder appeared, it migrated to my left shoulder. Since then, the same pain appears and vanishes in both shoulders without any predictable pattern.

It has been more than nine years since I retired from the tree-planting lifestyle and the pain in my shoulders continues to come and go. It has not, however, remained isolated to my shoulders. My hips are often affected, making it impossible to sit for an extended length of time (long car trips and university lectures are particularly problematic). My knees are affected as well; at night I often wake up to an intense burning sensation in my right knee that seems to be accompanied by tightly flexed quadriceps. This burning might go on nightly for two weeks and then vanish suddenly. Intermittently, the joint of my big toe on my right foot becomes red and inflamed. Again, this lasts for several weeks and eventually disappears. While the pain in my joints and muscles is not entirely debilitating, it does make certain activities much more difficult; and its harrowing invisibility means that my limited abilities do not necessarily make sense to those around me, particularly family and colleagues.

My joint pain is accompanied by various other symptoms that may or may not be related. In particular, I have suffered from Restless Leg Syndrome (RLS) for at least ten years. While I don’t remember the exact moment of its instigation, I have experienced it at least since my first pregnancy at twenty-two. My mother and sister also suffer from RLS. Years ago I recall my mother describing this strange sensation in her legs, a bubbling movement that felt something like intestinal gas. At the time, my sister and I thought this farting leg disorder was quite comical. Only now do I realize how far-reaching the effects of this syndrome are. To me, RLS feels like a crawling sensation under my skin accompanied by the sudden and uncontrollable urge to move. It occurs primarily when I am overtired or after I have been sitting for long periods of time. I normally counter this sensation by flexing my legs hard, which sends me several minutes of temporary relief, but eventually I simply have to go to sleep.

Attempting to trace these symptoms back to events in early childhood, I have tried to recall significant dates in my own health history. I was once hospitalized for a concussion I received after falling down a set of basement stairs onto a bare cement floor. I remember this vividly. In my childhood house, a short set of stairs went from the foyer to the main floor and another longer set, from the landing to the basement. I could stand on the edge of the landing where my eyes lined up perfectly with the main floor whose space was demarcated by a spindly railing. One day I had the idea that if I leaned forward and placed my hands on the edge of the floor I could swing like a monkey and arrive safely back where I began. Hooking my fingers over the trim that comprised the railing’s base I lifted my feet and swung forward, only I didn’t end up back where I began. Instead I found myself prone on the cold basement floor with jagged television lines clouding my vision. A scream erupted from my mouth that had the shape of the word “mom,” but I didn’t recognize the voice as my own. My mother, who was in the shower at the time, came running down the stairs and scooped me up, dripping still-steamy water droplets onto my limp body. I think I was about ten when this happened. (Somehow all the significant things that happened to me happened when I was ten. At least that’s the way I remember it.) I think I spent about three days in the hospital where I vomited every time someone touched me for at least the first 24 hours, where I played a funny game my mother bought at the hospital tuck shop while I convalesced, where the hospital food smelled exactly like the overcooked microwave food my dad ate after twelve hours on the car lot, where I woke up the next morning with one whole side of my body pins-and-needles, where they awoke me every hour and asked me the same questions—my name, my address, how many fingers—over and over, where they brought a neurologist across from Toronto to have a look at me.

At sixteen I went on the birth control pill and shortly afterward experienced what, in retrospect, was likely an ocular neuropathy. Suddenly a small prismatic disturbance entered my peripheral vision and proceeded to grow until my entire field of vision resembled a window made of beveled glass. At the time, I was out shopping at the mall with my mother. We had gone our separate ways and agreed to meet at a designated time and place. So there I was wandering alone in a crowded shopping mall searching for my mother through slowly fragmenting vision, a turbulent flickering cluster of splintering light. When I eventually began to experience numbness and tingling in my fingers, the doctor tried me on a different birth control pill. I tried several different brands and doses and finally stopped taking the pill when I was nineteen; I have never been on it since.

During another visit to the hospital during my youth I was given suppositories. (Again, I must have been about ten.) The reason for this visit was a sharp gnawing pain in my abdomen just below my ribcage, one that plagues me to this day, one that has no predictable schedule. It seems to sit in the crux of my solar plexus and comes in strange waves, almost always at night. I lie in the fetal position, which doesn’t really help, but I can’t move. It lasts anywhere from minutes to hours; and the strange thing is that it makes me yawn. It’s as if the intensity of the pain saps me of every ounce of energy I have. During that one particular visit the doctor thought I might be constipated, so he gently inserted a small white torpedo into my anus. I remember the friendly male doctor and his white gloved hands and my mother’s soothing voice telling me not to worry. I was worried anyway; no one had ever put anything into that place. Just last spring the pain in my solar plexus returned and I lay alone in my one-room basement apartment, knowing I wasn’t constipated, listening to college kids yell obscenities on the street after the bars let out. The doctor at the walk-in clinic the next day sent me for an upper-GI x-ray and an abdominal ultrasound. I forced down the thick purplish barium solution after the pop-rocks so that they could take pictures of my swollen gas-filled belly. All the results came back negative (as usual); no ulcer, no damage, no nothing.

Shortly after the stomach trouble last year I developed a twitch in my thumb (I can’t remember which one). This twitch blossomed into a host of migrating twitches that traversed my entire body. No body part was safe; I had twitches in my legs, my arms, my cheek, my stomach, and even those dark cavernous places that nobody ever sees. After two weeks of this incessant twitching I checked myself into the hospital in the middle of yet another anxiety-ridden sleepless night. While I felt silly inhabiting the waiting room amidst sick and crying babies and elderly coughing people for something as seemingly insignificant as muscle twitches, I knew that if I didn’t find out what the problem was I would drive myself crazy (if I wasn’t already). After some stealthy internet research I had managed to convince myself that I must have ALS, or Lupus, or some equally fatal disease. My hospital stay revealed nothing out of the ordinary. It took me six months to get an appointment with a specialist in Orillia, a wonderfully warm-hearted rheumatologist who took my concerns seriously. After a host of physical tests, from range-of-motion to strength tests, and an analysis of the “tender points,” I was unofficially diagnosed with Fibromyalgia. I say “unofficially” because I have no documentation stating this, only the doctor’s assertion that I responded to enough of the eighteen tender points to be considered “fibromyalgic.” He also explained that many of my muscles are in chronic spasm, especially that deep-seated core muscle called the piriformis. He could give me muscle relaxants and pain killers, he said, but he didn’t recommend this. I was grateful. Instead he sent me off with a photocopy of potentially helpful stretches (which I am far too lax about doing). It has been over a year now since that first fateful twitch threatened to steal my sanity and I have grown accustomed to these apparently benign muscle fasciculations; at least I am no longer convinced I am dying of some undiagnosed fatal disease.

I have always been a bit of a hypochondriac, as a child interrogating my mother about every bodily sensation, every ache, every pain, every terribly and frightfully embodied moment. I’ve always also been a bit hysterical, an anxious child operating under the fight-or-flight mechanism for a good part of every day. Sometimes even I find it hard to take myself seriously. Yet the symptoms are real. I still have heart palpitations and muscle twitches; I still suffer from migrating joint pain that makes the odd day unbearable; I still experience periodic stomach cramps, strange ocular disturbances, shortness of breath, and anxiety. It has simply become a part of who I am. I have learned to live with these things, rather than fight them. I am still curious though and I wonder what these symptoms mean, why there are so many others experiencing the same general set of symptoms and, like me, failing to receive a definitive diagnosis. In some ways, this blog is meant to reach out to those whose experiences are similar. At the same time, I aim to capture the pervasiveness and simultaneous banality of living and dealing with chronic non-fatal illness.

Anatomy of an Academic

A (Not-So-)Brief History