The painting is by Francisco Goya, a self-portrait with the doctor who nursed him through a serious, life-threatening illness. The artist's inscription says 'Goya, in gratitude to his friend Arrieta: for the compassion and care with which he saved his life during the acute and dangerous illness he suffered towards the end of the year 1819 in his seventy-third year.' This is what so many of us with ME have wished for -- compassion and care.
Guest blog by Amy McLaughlin
One of the biggest casualties for me in a very long illness has been a loss of faith, not in any god, but in the integrity of our health care system, and in language itself, in the possibility of using words to successfully communicate something vital to others.
No matter how hard I tried to describe my illness, how deep and tenacious its bite, how crushing the symptoms, people -- including, tragically, doctors -- are often skeptical. This baffled me for a very long time, until I accepted how visual a species we are. Like Othello, we want 'the ocular proof', and like Othello, we can be precipitate and destructive fools, easily misled by our confidence in what we think we see, and the rightness of our interpretations. A central problem seems to be that I, and other patients with this disease, don't look the way sick people are expected to look.
Of the many doctors I've seen over the years, only the first, back in 1987, asked any questions at all about the onset of the illness. I had been fine, fully functioning, with a job, social life, and many interests. Over the last couple of days that I was well -- the long Memorial Day weekend -- I hiked in the country, and when I got back to the city visited the Metropolitan Museum, walking down to Greenwich Village afterward before heading home. In less than 24 hours, it would be impossible for me to cover that kind of ground, and in fact, it would be a herculean effort just to walk a single block.
On Tuesday morning, I awoke ill, with the raft of miserable sensations that inaugurate a bad case of the flu -- headache, stiff neck, nausea, and an awful, hydraulic drag, as if some poisonous liquid was coursing through me. My temperature was 100, exactly. I wasn't alarmed, however, only annoyed. With a bitter sense of irony, I recall my irritation that the next couple of days of my life would be disrupted. It was May 26, 1987, and I was thirty-one years old.
My father had been a doctor. He died young, when I was still a small child, so my memories of him are sparse and misted by time. But I loved my father and was very connected to him, and he made a profound impression on me. Our living room was filled with his books and records. He read widely, and not only in the sciences -- the night he and my mother met, they had a spirited argument about Camus.
In addition to literature, he read history and philosophy. As a boy, growing up during the Depression, he had kept a birding notebook, and corresponded with Roger Tory Peterson about snow geese that he had seen in Van Cortlandt Park. He loved music, and I can remember sitting on the floor watching him, fascinated by the motionless rapture he was in, as he listened to Beethoven. I grew up assuming that doctors were cultured, were intellectuals who thought deeply, and were therefore not likely to make quick, facile judgments or have their thinking abbreviated by stereotypes and unsupported canards, especially not about anything serious, such as an illness.
In the early weeks, my flu seemed to abate slightly without resolving. I was a little puzzled, but still not seriously worried. In the days that followed, though, I noticed increasing effort in doing the most ordinary tasks. It was as if my limbs were weighted, or I was trying to walk through water. Going upstairs became especially rigorous. My muscles would start burning, I would fight not to collapse, dragging myself up by my arms. By the time I arrived at work, I would be completely staggered, barely able to deal with the most routine tasks, needing desperately to lie down. As I tried to describe what was happening, responses usually fell into two camps: the people who teased me about being out of shape, and the ones who simply looked bored and annoyed.
The mysterious flu hung on, and in July 1987 I consulted a doctor for the first time. He took me seriously until the first round of tests came back with normal values, at which point he began to talk about depression. Had I broken up with anyone recently, he asked. Sitting on the edge of his examining table in my underwear and a blue smock, a surge of desperation rose up in me. My limbs felt molten, my head and neck hurt, and I was weak, weak enough to be anxious about getting myself home. I described how I felt, trying to be as clear as possible, and said that I was sure this was not depression. He countered that it very well could be. I returned once more, in late summer, and he told me he couldn't do anything for me. I insisted that I was really ill, and he referred me to an infectious disease specialist.
Her office was on the Upper East Side. For years, I had been used to zipping around New York City with ease, but the subway trip and unavoidable walking now represented a serious ordeal. The familiar, searing pain in my leg muscles grew worse with every step. I described my symptoms, the muscle pain, the sore throats, the staggering exhaustion. Sitting across from her desk after a quick physical, the doctor declared confidently that I was fine.
There might be a small group of people who actually had something like chronic mono, but it was questionable. Most were just depressed, she said, waving her hand in a theatrically sweeping dismissal. I tried once again to describe, as carefully as I could, what I was feeling. It was as if I were suffocating, not in my lungs but throughout my body. My legs, and then everything else, would give out from minimal effort, and there were unpleasant tinglings in my hands and feet.
The doctor's temper flared, and she shouted me down. "Amy, there is nothing wrong with you! You're just depressed. You need to get really, really aerobically fit, and see a therapist." The subject was closed; the doctor began to chat happily about her life in New York -- she was a transplant from Toronto, married to an architect, she told me. Then she started talking about writers she liked -- Robertson Davies, a fellow Canadian, was a favorite. She suggested I read his work -- I had -- and got up to indicate that our futile interview was over.
On the way home, I was so ill and depleted that I could not summon the energy to get off at my subway stop in Brooklyn Heights. I rode on for two more stops before I managed to force my body up and ride back on a Manhattan-bound train. Once in my apartment, I collapsed on the bed. It was at least an hour before I was able to sit up and take off my coat. I wondered what I could do to help myself, how I could continue to work, and how I could survive.
Around that time, our federal health agencies gave my non-disease a new non- name: Chronic Fatigue Syndrome. Despite the way I had been dismissed by the physicians I had consulted, I had still felt sure that something as terrible and overwhelming as what I was enduring, would be treated seriously by institutions like the CDC. When they baptized it so contemptuously, I was shocked. I have wondered ever since about the institutional response to this disease, and of just what proportions of venality, cynicism, and sheer stupidity, it has been compounded.
The illness wore on and the reactions of my friends and people at work shifted from amusement to angry impatience. After a year and a half of fighting it, I could barely function at my job, and I no longer had much social life. An attempt to visit the museum I so loved ended on the steps outside, where I simply gave up and turned around, going home without seeing a single painting. I spent all my spare time crashed out in my bed.
One day, still dragging myself into the job I desperately wanted to keep, I collapsed on the floor of the great, vaulted main room in Grand Central Station. It was rush hour, and the crowds stepped over and around me. A miserable realization, that they assumed I was drunk, hit me. I knew I was licked, and went on medical leave. I've never been able to work again.
In the absence of any kind of help from the medical community, I prescribed a 19th-century cure for myself, a retreat to the country. I could no longer afford New York City, nor could I handle it physically -- my native city, which I had always loved, was now overwhelming. So, already mostly horizontal, like the denizens of the Magic Mountain, I moved to a small Hudson River town, where, I was sure, I would begin to recover.
Except I didn't. Every day I would awaken to the leaden weight of the illness, as if crushed beneath a prehistoric dolmen. It took hours to fight my way through a thicket of pain and exhaustion. The best time of day was usually around noon, when my symptoms would back off somewhat. I would seize the opportunity to walk to the grocery store, every step an effort of will. Afterward, as reliably as the sun rises in the east, came the horrific post-exertional crash.
Poisons seem to come rushing off an internal spillway, flooding every cell. There is a kind of awful thrumming as if an electric current is running through me. The state is a sort of penultimate stop just short of actual paralysis. It is frightening and awful, like being delivered to the threshold of death, over and over again. My heart struggles to beat, bands tighten around my skull, and my whole body labors just to maintain the most basic functions of life. The medical profession describes this as 'fatigue'.
I attempted to maintain contact with the friends I had had. One day, shortly after leaving the city, I called the woman who had been my best friend at the time I got ill. She began yelling. 'I'm not going to indulge you, Amy. The way you are isolating yourself is the worst thing anyone could do. I am not speaking to you again until you pull yourself together.' I've been unable to fulfill that requirement, and she kept her word.
All mortals experience loneliness now and then, but what enveloped me at this point was unlike anything I had ever been through. The only person with whom I had regular contact was a checkout clerk in the local supermarket. I couldn't have carried more than a couple of days' worth of groceries, and despite the punishing physical cost, I wanted to continue these daily hikes in order to get some exercise. She was a sullen young woman with brittle white-blond hair, but when I thanked her as she handed me my change, she would say abstractedly, not looking at me, 'No problem'. I subsisted on these scraps of human contact for a good two years.
The myth that the disease I had lacked any objective physical findings persisted. However, the specialist I saw ran tests that showed a host of functions gone awry. There were wild, compensatory floods of catecholamine neurotransmitters, precipitated by the least physical effort, as my body struggled to keep going. Just standing up caused my norepinephrine levels to surge to 17 times normal. For several years, I completely lost Natural Killer cell function, before it returned to merely being dangerously low. This is particularly frightening because NK cells are the body's first line of defense against cancer.
A brain scan showed global hypoperfusion, some of it severe. The results of a long and grueling neuropsychiatric exam were deflating: the doctor thought I had previously been in the 99th percentile, but was now testing as a moron in some areas. I can still recall the look on his face during the test -- an expression of near disbelief, as if he were a taxonomist encountering a previously unknown species, unsure of how to classify it.
That was bad news, but didn't surprise me. I was aware of the cognitive deficits, confusion and an inability to concentrate, which along with other symptoms grew exponentially worse with even modest physical effort. One day, impatient with my confinement and loss of fitness, I pushed myself to keep walking farther than usual, despite my body's clamoring protests. It was a beautiful day in early autumn, and I wanted to be outside, not trapped in my bed. As I walked, along with the usual pain and intense effort, a strange detachment, a sense of being far away, overcame me. I looked across the river at the far bank of the Hudson, and it seemed remote and alien in some way that eluded definition.
I headed back to my apartment. When I got there, I stopped abruptly. I wasn't sure it was actually where I lived. But it seemed to me that if the key turned in the lock, going in would be acceptable. Upstairs, I fell onto my bed, hanging on, waiting to feel better. My muscles burned painfully, and I didn't have the strength to get myself a glass of water. Outside, the sky faded to the deep cobalt of dusk, and I saw lights coming on, one by one, in my neighbors' houses. I realized, with a jolt, that I could not remember my name.
Panicking, I tried to think of ways I could discover what it was. I am a person, I told myself carefully. People get mail. My name would be on my mail. I struggled to my feet, turned on a light, and found an empty envelope lying on a table. But my own name looked strange, hardly recognizable as mine. There was no one to call or ask for help. I was now almost completely isolated, a marginal person seeing life at a distance, peering at the world through the leper's squint.
At least a million Americans contracted Myalgic Encephalomyelitis (for that is the real name of this disease) in recent decades, starting with an epidemic explosion in the 1980s. There have been outbreaks of something very similar, including noteworthy ones at a Los Angeles hospital in 1934 and at Royal Free Hospital in London in 1955. Almost everyone recounts a strikingly similar tale: a sudden onset of a flu that never resolves, after which nothing is ever the same.
The evidence is highly suggestive of an infectious disease, and yet in an insouciant flouting of Occam's razor, people latch on to almost any other notion to explain it. Karma, unwillingness to work, psychological problems, deconditioning from laziness, and depression are floated as theories, while serious studies of possible pathogens -- almost all carried out with private funds -- are largely ignored.
The notorious Simon Wessely of King's College, London, has insisted that patients are neurotics who have come to irrationally fear activity, coddling themselves and perpetuating a self-inflicted disability that can be overcome with exercise and psychotherapy. The fact that M.E. patients are anything but apathetic, and quite to the contrary are usually terribly frustrated, even grief stricken, by their inability to lead normal lives, is scarcely noted -- a bit of data, along with all the frightening biological findings, that is inconvenient for proponents of so-called 'psychogenic' disease. Wessely's thesis is welcome fodder for conservative policies that portray disabled people as frauds, lazy slackers who drain the public coffers.
Over the years, I have to some extent adjusted. There was even a brief, blissful period when I managed to get on a horse occasionally, something so wonderful it almost made up for everything that had been lost. For me, those were the happiest days I have had in 30 years. I briefly exchanged the identity of an invalid for that of a rider, in a transitory but ecstatic victory over the disease.
Acceptance of the illness is provisional for me because it involves so much temporizing with what are simply normal desires. To work and to love, in the whole range of ways that make for a full life, is mostly denied to people who are this ill. A sentence from Keats' last letter has haunted me for years. I have a habitual feeling of my real life having passed, and that I am leading a posthumous existence.
Many of the lesser pleasures others take for granted are simply beyond my capacity. About three years ago, memories of my early explorations of New York City with my father came back vividly. The nodding chrysanthemums at the Botanical Gardens, the sun-dappled light in the courtyards of the Cloisters. As a small child, I loved the wildness of the rock garden, and the rich, earthy humidity of the greenhouses. I suddenly wanted to visit both places, and badly. Even something so relatively modest, though, remains frustratingly out of reach, as my disease wears on, headed for its fourth decade.
Thank you Amy McLaughlin for sharing your important story with the ME community!
Resources on ME:
MEadvocacy Resource Page https://www.meadvocacy.org/resources
MEadvocacy Blog Index - https://www.meadvocacy.org/blog_index
ME-International Website - https://www.me-international.org/