Adrienne Pilon

It was during a family road trip that I first felt the chill wind of fatigue. Driving and navigating unfamiliar highways took a toll on me, and at day’s end, a sensation of cold passed through my body, as of an impending fever, reminiscent of a bout of chicken pox I’d had years earlier. I sat by the pool at our hotel and lay there, insensibly tired, arms heavy and burning. The sensation lifted somewhat after dinner but returned intermittently over the next few days as deep within, I felt something amiss. It faded over that week and I shrugged it off as a virus that didn’t take hold or low blood sugar or just a fluke.

Almost a year after that trip I took a fall, slipping on the wet bathroom floor. I fell because the floor was covered with water and soap because I had been washing it down—flooding it, really—because I had dragged a shit-covered rug through there, and then my children had come through to shower with feces on their shoes and clothes. There was shit on the rugs, on the walls, and even on the piano. My cat, once she got wind of it, was upset and for the first time in her life, proceeded to defecate in the house.

My house was shit-covered because friends had been visiting and their young child had had an epic accident that spilled out of his pants, down his legs, into his shoes, and tracked into every room for about an hour before any of us noticed. While this was going on, our friends spoke at length about this son and about their sorrow of the past months. They had been grieving the death of their youngest, a sweet soul who had been ill for all three years of his life. We talked, and then, noticing their son had had an accident, took their leave in a sudden rush; it was evident to us all that his incontinence was an outward manifestation of sorrow and disorientation. As they left, they seemed lighter than I’d seen them in some time.

I, on the other hand, felt a strange transformation upon their departure, sensing a leaden weight upon me, as though some of this grief had been deposited in the house. A dark cloud seemed to manifest above my home. Is such a thing possible?

As I cleaned, I experienced a sense of dread and sadness. I felt that I wouldn’t be able to find all the shit and clean it—that it would lodge in the crevasses of the wood floors and the fibers of the rugs and that it wouldn’t ever come out. I cleaned and scrubbed and washed and finally got in the shower myself and as I stepped out, I slipped and fell on the wet floor, using my arm to brace the fall. It hurt, but not terribly, settling into a dull ache.

I didn’t think much of it until two days later when the ache in my arm turned to a ferocious throb, my wrist bone swelled, and the strange sensation I’d had on that road trip a year earlier returned. X-rays revealed nothing interesting. I was given Vicodin, but the pain and feeling of sick exhaustion, accompanied by a strange hum in my body, persisted. I thought: cancer. I thought: a blood disorder. Then came the rounds of doctors, the rounds of inconclusive tests. An internist told me that it was all in my head; an orthopedist bet “dollars to donuts” that I had rheumatoid arthritis, judging by the pain and sudden swelling of the wrist; a rheumatologist suggested lupus. All blood tests were negative. The rheumatologist insisted I take immune suppressing medication, because I surely had some sort of autoimmune disorder and could end up in a wheelchair (“we’re losing ground!”). The doctors finally settled on a short course of steroids, which made my joints feel better, but made my arms burn and kept me awake all night thinking strange and dark thoughts.

While the pain was bad, the fatigue was frightening. Each day felt like a marathon. Rise, dress, drive to my job teaching high school English. Work, measuring the hours and the tasks. Pick up my sons from school. I would fragment the day into individual parcels. Like a mantra, I would say, “just this one thing,” and do that one thing, not thinking about the next. “Drive son to guitar lesson.” “Park the car.” “Get out of the car.” And so on. Simple tasks, such as winding my hair into a knot on my head or writing on the chalkboard in the classroom caused a burning fatigue in my arms, as though I had been lifting heavy weights.

Laid low, in anticipation of the house falling down around me, I shelved creative ventures for practical ones and used good days (for there were good and bad days) for grocery shopping, laundry, paperwork. I left folders of lesson plans in case of my absence at work—an absence that almost never happened, because fear of capitulating to the fatigue was sometimes as strong as the fatigue itself.

Socially, I felt as though I had disappeared. I begged off parties and dinners and limited my energies to what I could manage. I prepared for upcoming events by resting for days in advance. Showing my face to the world felt like a monumental pretense; artifice, and the occasional partial revelation seemed essential. Excuses such as, “something I ate,” or “that cold that’s going around,” proved useful for explaining absences. To avoid exertion, I had another set. Can’t lift the stack of books? Sprained my arm at the gym. Trouble with the stairs? Old ankle injury. I knew then, and know now, that hiding is necessary if one wants to work and be in the world while harboring an invisible illness.

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Fatigue, in its noun form, is defined as, “extreme tiredness resulting from mental or physical exertion or illness.” What if there’s been insufficient exertion, or no readily definable illness? Example: an outing to the beach on an unseasonably warm January day. I’d parked the car and taken a two block walk down to the sand where my family was at play. Six months earlier I’d have run miles without breaking a sweat, but on this day I collapsed, shaking, into a beach chair and waved off my husband’s attempts to get me into the water. I love bodysurfing, but the thought of putting on my bathing suit exhausted me. I sat, grateful for the chair. Grateful for the sun that was warm and not hot. Grateful that my family was happy in the waves. I was grateful, too, for the slight breeze, but as it increased in intensity I found the very sensation of the wind on my body tiring.

There was no reason for it. As a verb, fatigue is “to cause to feel tired or exhausted.” I hadn’t done anything that day to merit exhaustion, though. In any form, fatigue isn’t the right term; I’ve tried to find a better word, going the OED for etymological assistance, but fatigue is as close as I come. No expression felt sufficient to describe my complete collapse that afternoon.

Rilke, in his letters to the young poet Kappus, complained that for a time he was, “…. suffering the whole time, not exactly from an illness, but oppressed by an influenza-like exhaustion, which made me incapable of anything.” This was just such an exhaustion, one accompanied by joint pain, muscle pain, a fog over my mind, and a persistent buzz in my body that kept me from resting well, and often, from sleep. Of all these symptoms, the very worst was the fatigue.

To be clear: I was not simply tired or “stressed,” as has been suggested to me. This was a condition caused by a virus, or an autoimmune disorder, or fibromyalgia —all conditions doctors have told me I had, or could possibly have, or could be developing. It is the physical sensation of extreme depletion, what I term (again, inadequately) a “sick fatigue” at times so excruciating, that it feels like a nausea of the entire body, though I don’t vomit. When I try to explain it, even now, I can only liken it, as Rilke does, to having the flu.

This, of course, is the solace so often found in literature—the discovery of others who share our suffering, and the eloquent expression of said suffering. There are others. The writer Laura Hillebrand wrote of her unnamed illness and its crippling exhaustion that kept her housebound for years. Historical records note that Florence Nightingale suffered from a chronic fatigue, likely brought on by brucellosis, a bacterial infection and exacerbated, perhaps, by a lifetime of heavy work. Though she lived to be ninety, she spent many of her final years in bed. She was, perhaps, exhausted.

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Exhausted, adjective: “Consumed, used up, drained.” Exhaust, verb: “Reduce the efficiency of (a muscle or organ) by prolonged activity.” Or perhaps a secondary definition of fatigue is pertinent here, again, as a verb: “to weaken (a material, especially metal) by repeated variations of stress.” This is what I believe may have happened to me. After an extended period in which I woke once or more nightly (“prolonged activity”) to administer medicine to my asthmatic son (“repeated variations of stress”), I lost the ability to sleep properly. Months went by and I was depleted, fatigued, exhausted. I fell asleep on the drive to work one day and backed into a brick wall. I fell asleep while teaching. I fell to the ground and hurt myself in the face of another’s staggering grief. Finally, I fell ill.

I have never had a clear diagnosis. Physically, I have looked fine, even on terrible days. Rheumatologists, who should know better, have said to me, “You look like a healthy person. You look great. What’s the problem?” Doctors have often committed the crime of condescension as they sometimes do when a patient does not conform to a particular profile, or is difficult to diagnose, or asks too many questions, or is female. It is a common problem. On online forums, it is mostly women who despair of having a proper diagnosis, or at least someone who will listen with sympathy and wisdom. More difficult than the doctors are the family members or friends who dismiss what they are not able to see.

There are various names for this mysterious fatigue, and acronyms, too. Besides fibromyalgia, we have chronic fatigue syndrome and myalgic encephalomyelitis (CFS/ME), systemic exertion intolerance disease (SEID) and now, Long Covid with its attendant troubles. My preferred term for my own syndrome is “my malaise,” because I like the poetic nature of the term and what is an undefined illness if not a malaise?

Whatever it might be, I have mostly reached an equilibrium, a détente. With alternative therapies and diet management I have restored myself to health. For several years I’ve had more good days than bad and have an excess of energy—or at least enough energy—to work and cook and walk and do all the things that comprise a day. I can no longer kayak or swim regularly or play the piano, as these activities cause pain and fatigue in my arms, where my sickness seems to lurk. Overwork the arms and I have a setback. Yet nearly every day I walk or go to the gym. The malaise is in abeyance. I feel lucky, whatever “lucky” is—another concept and word I find dubious and inaccurate.

Not long ago, though, the malaise returned. It was a Tuesday. Like a wave, I felt it wash over me. Some time had passed since I felt its grip in this way. When it is gone, I happily forget how it ruled my life and my days, how I measured out my energy and lived in increments. How I calculated the distance to the bathroom, or to the kitchen, because perhaps eating something will help. Getting there and not preparing food, because even a plate felt heavy. Brain, clouded. Worst of all was the fear: what if I cannot get up next time?

That Tuesday I was conquered. It may have been dietary indiscretions, or exposure to a virus, sending my immune system into overdrive. Hormones, sleep patterns—all these mysterious variables and their combinations can conspire to bring me to a crashing halt. This was such a halt. I gave in, came home early from work and lay on the couch. I couldn’t read; I found the mental exertion too much for my clouded mind. I watched a film, Two Days, One Night, and the protagonist’s difficulty made me feel more exhausted.  I contemplated turning it off, yet I found in the tired and depressed character a kindred spirit. At one narrative juncture she is hospitalized and I felt envious of her respite in a clean, white bed where she lay nearly motionless. Soup brought in a cup. Liquids through a tube. “A nice rest,” I thought, “how lovely to just lie there.” That she was hospitalized for attempted suicide did not resonate in that moment. I just wanted to lie there, too. I just wanted it—the fatigue, the pain, the brain fog, the dread that comes with all of it—to stop.

It wasn’t going to stop, so I somehow needed to make sense of it. I returned to my well-worn copy of Rilke’s Letters. As he writes about sorrow and life’s challenges to the young Kappus, I imagine his own illness inspired these words:

Why do you want to exclude any disturbance, any pain, any melancholy from your life, since you don’t know what these conditions are working upon you?…do reflect that disease is the means by which an organism rids itself of a foreign body; you must then simply help it to be ill, to have its full disease and to let it break out, for that is its development.

It is a hopeful reading. Illness, infirmity, and grief come to us all. What might they have to teach us? Giving in to the experience of illness or grief might be necessary for recovery from whatever it is—physical or psychic—that ails us. Rilke continues with an exhortation that is both comfort and strength: “That is fundamentally the only courage which is demanded of us: to be brave in the face of the strangest, most singular and most inexplicable things that can befall us.”  I consider Rilke’s words because on a bad day I might have nothing else but the bed and the words. I consider how others more afflicted than me—Hillebrand or Nightingale—ruled their kingdoms from the confines of their beds. That despite it all, they were able to press on. That maybe this time out of life provides a space for reflection. It has generated in me more empathy for the suffering of others, which is no small thing. Yet, the “foreign body” is sickness, and though I cannot disagree that sickness can serve a function, I want nothing more than for it to be gone forever.

With this recent bout, the fatigue and pain began to lift in a few days. Gradually, I became a little more active, my mind less clouded. Then, one morning: a walk through the damp after a rain onto the pathways of the oak forest near my home. My mind organized itself anew. My step became brisk and my stride strong and I walked miles, gratefully, through the woods, into the shadows and out again to a clearing, forgetting, for the moment, what I’d left behind.

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