Losing them, fixing them, forgetting to put them in
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There’s a lot wrong with me. Researchers in Maryland have cultivated several viruses from my blood and spinal fluid, revealing that those viruses are rampant in my body. My body’s immune system flails away at them without success. It fails to respond to common viral material introduced in a skin test — antigens for mumps, tetanus, and candida — that ought to drive it berserk. At the same time, my system is so hyperactive that for nearly three years I’ve experienced the intense flu-like symptoms of a person whose body is waging war with foreign invaders. So my immune system is both energized and sluggish, parts of it working overtime and other parts on strike.
My central nervous system has been the hardest hit. Swollen and scarred, my brain works in strange ways now. My visual memory is in shambles. If I see you scratch your head while I’m talking to you, chances are I’ll forget what I’m saying. When I prepare hot cereal in the morning, I’m as likely to pour my rolled oats into the lid as into the pot. Washing a soup pot in the kitchen sink, I’ve extended the rinsing hose and pointed its nozzle down the neck of my shirt instead of into the pot, drenching and astonishing myself. I’ve put talcum powder instead of Crest on my toothbrush, ice cubes in the cupboard, and a salad in the oven to cool. At the grocery store, a stock clerk once chatted with me while I was selecting plums, and I put them into the recycling bin instead of my cart — an interesting variation on my usual practice of depositing my goods into other shoppers’ carts. Although I was a collegiate baseball player and a lifelong jock, my balance and coordination are unpredictable. I break mugs, plates, and glasses so often that I no longer risk clean-up duty. I see obstacles in my path and walk into them anyway. For nearly a decade I ran daily, putting in more than 2,000 miles a year. Now, instead of alternating running shoes every day, I alternate hand-carved canes.
Although I resist it, sometimes I simply feel unhealthy, like a polluted stream. The glands in my neck have been tender to the touch for almost three years, my eyelids and upper lip flutter all the time, my eyes and mouth are so dry they tend to stick shut. When my joints and muscles merely ache as though I’ve just run a dozen hilly miles, it’s a good day. I have dreams in which a giant stalk of rotten celery is growing out of my mouth. I try to pull it free, but it’s lodged so deeply in my belly that it feels as though I’m uprooting my soul.
I look all right, even if my tightly curled hair has straightened and my muscles, built up by years of hard training, have lost all tone. But I now buckle, breathless and fatigued, after minutes of easy walking during an exercise treadmill test. Sitting in a chair to recover from the exertion, ten electrodes still stuck to my shaven torso, I can only stare at the floor and wonder about the body’s essential delicacy. I, who always thought of my body as sturdy, almost indomitable.
And the things I say! I ask a friend for a stick of decaffeinated gum, complain to a colleague that my hair is leaking instead of thinning, ask my doctor whether the blood tests show amnesia instead of anemia. I call the car’s antenna an umbrella, my Greek captain’s hat a shiptain’s hat; I say that film needs to be validated instead of developed. The xerox machine apparently stands for all machines in my rearranged brain: I say I’m going to reheat my coffee in the xerox, ask my son to xerox the lawn, explain to my daughter that the doctor will xerox her injured arm. My spelling, like my math, has become utterly original.
I have Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and perhaps soon to be known as Chronic Immune Activation Syndrome (CIAS). If I hear you call it the yuppie flu, I’ll hit you with a xerox machine.
I got sick on December 7, 1988 — my personal day of infamy.
I was forty-one and fitter than ever, running seven or eight miles a day. A serious, competitive racer, I won ribbons in my age group nearly every weekend. Throughout the summer and early fall, I’d trained intensively and broken personal records at every distance from one to ten miles.
I’d just completed a second novel and a third chapbook of poems. My writing was appearing in magazines like Harper’s, Shenandoah, Prairie Schooner, and The New Criterion. I was awarded a poetry fellowship by the Oregon Institute of Literary Arts and had received a prize for my fiction from the Kansas Arts Commission. I was giving readings every few months and began teaching a poetry-writing class in my home one evening a week.
As a senior public policy analyst for an energy corporation, it was common for me to be on the phone dealing simultaneously with questions on proposed legislation in Oregon, Washington, California, Montana, Idaho, and Wyoming; people waited for my advice before acting. I’d received a bonus and raise for my performance during the last legislative session and had been given new responsibilities.
On December 7, I was in Washington, D.C. at an energy policy seminar. When I woke to run at dawn, something was wrong. The room reeked, as though I could smell the odors of everyone who’d ever stayed there, and I was too exhausted to fold back the sheets. I felt dizzy and disoriented, walking into walls, trying to enter the elevator before the doors opened. Jet lag, I thought, this can’t stop me; I went out to run two laps around the Mall. After all, I had a race back home Sunday morning and needed the workout.
I couldn’t stay awake during the seminar, and had no desire for dinner. I took a cab to a bookstore instead of walking. Back at the hotel, though deeply tired, I couldn’t sleep, so I went down to the bar for a ten-dollar snifter of cognac. I couldn’t take one sip; alcohol was suddenly disgusting.
Sudden onset, consistent with viral infection, is a classic symptom of CFS. The baffling speed with which my power was stripped — and never returned — remains shocking nearly three years later. As Dr. Oliver Sacks says in his book, A Leg To Stand On, “To be full of strength and vigor one moment and virtually helpless the next, in the pink and pride of health one moment and a cripple the next, with all one’s powers and faculties one moment and without them the next — such a change, such suddenness, is difficult to comprehend, and the mind casts about for explanations.”
I was too severely affected even to realize how sick I was. By Christmas, I couldn’t concentrate at work, was having trouble reading, and had run out of ideas. I got lost on my way back from the coffee shop I’d gone to every day for two years. I could no longer remember people’s names or explain how a hydroelectric dam works. I reversed numbers when I did math and letters when I wrote, so my memos and cost estimates were consistently incorrect.
My temperature was 96.2 and remained below 97 for the next two years. I was sleeping no more than two hours at a time. I had agonizing headaches, pinpointed between my eyes, lasting five days, unaffected by any analgesic. My leg muscles and joints always hurt, as though I’d just run a marathon. This was confusing because I could barely run two miles anymore.
Listen to your body, my running friends always said. Listen to your body, I had told friends who were hurt. I listened, heard my body saying it was fatigued, and decided to push harder in order to break through. Running was synonymous with health; if I forced myself to keep running, I would get stronger and beat this thing, which seemed like the most tenacious flu I’d ever had.
On January 20 I finally could not get out of bed at all. I still thought a couple of nights’ sleep would do it. My family finally convinced me that this was more than a bad flu.
It took me five months to get diagnosed with CFS. From January through May 1989, my former wife and I went to half a dozen doctors in search of an explanation. I could not have done it without her help; I was no longer able to drive nor to explain my symptoms or history coherently. Although she was working as director of planning for a Portland medical center, she made time to take me to consultations, and she picked up X-rays and films of magnetic resonance imaging (MRI) tests so they would appear at the right doctor’s office at the right time. She described my situation to skeptical doctors, and took notes so that we could make sense of what they were saying. She dealt with the insurance carriers and with my boss. Most important, she believed in me.
I heard a frightful medley of preliminary diagnoses: hepatitis, Lyme disease (caught from a tick in the woods where I ran), multiple and amyotrophic lateral sclerosis, somatization disorder (i.e., it was all in my head). I was tested for AIDS, syphilis, leukemia, and cancer. I heard a new language, in which doctors spoke of unremarkable tests (some were pretty remarkable to me), insidious onset, morbidity, and elevated titers. I encountered indifferent machines and technicians, swallowed awful potions, and was injected with fluids that felt both hot and cold at the same time. I submitted to tests that could have been designed only by someone much sicker than I was. About the only thing the medical practitioners didn’t do was listen to me.
In his book, Newton’s Madness: Further Tales Of Clinical Neurology, Dr. Harold L. Klawans says, “It is fear that leads physicians to rely more on scientific data than on their patients. Laboratory results, not history. X-rays, not the physical examination. Logic, not insight. And never intuition. And along the way, understanding and caring have gotten lost.” Norman Cousins extends this point in Anatomy Of An Illness, when he says, “Some doctors tend to favor the new technology precisely because they don’t have time enough to allow the diagnosis to emerge from a comprehensive direct personal examination, and from extended give-and-take with the patient.” Cousins also observes that the laying on of tools has replaced the laying on of hands. Dr. Oliver Sacks in Awakenings talks about the difficulty “created by physicians themselves who, in effect, decline to listen to their patients, to treat them as equals, and who are prone to adopt — from force of habit, or from a less excusable sense of professional apartness and superiority — an approach and language which effectively prevent any real communication between themselves and their patients.” That’s certainly the way it was for me, the art of diagnosis disappearing within the science of diagnosis.
I endured a battery of the most sophisticated and expensive procedures, including brain and liver scans, MRIs, electroencephalography, and electromyography (where they stick huge needles into your muscles to measure their ability to conduct electrical impulses, all the while saying, “Most patients tell me this doesn’t hurt”). Just months after running ten miles in less than an hour, I couldn’t walk fifteen minutes on a treadmill. I failed to put together jigsaw puzzles or count backward from a hundred by sevens or stand erect with my eyes closed.
It will be hard to forget the first physician I went to, who mumbled to himself as he read the instructions for a thyroid-releasing hormone test that he had never performed before. His wife, who was the nurse, tried to distract me by asking about my family, but I was transfixed by the sight of this man trying to figure out how to conduct a test he said would cause my blood pressure to fluctuate wildly, give me hot flashes, and cause me to feel an intense need to urinate for its entire thirty-minute duration. His demeanor, especially when he crumpled up the page, reminded me of my son when he was a boy, hating to read instructions and preferring to “figure it out by doing it.”
Eventually, I found a doctor . . . who knew exactly what was wrong with me. As bad as the diagnosis was — a disease that could be neither treated nor cured — I wept with relief at having a name for it.
Eventually, I found a doctor . . . who knew exactly what was wrong with me. As bad as the diagnosis was — a disease that could be neither treated nor cured — I wept with relief at having a name for it.
Another physician, a former athlete who looked enough like me to be my brother, refused to meet my eyes as he told me he was convinced I was not depressed and not faking. He suggested I might be suffering from a post-viral fatigue of unknown origin, and if I was, there was nothing he could do. He then told me I should see a psychologist.
Eventually, I found a doctor in May 1989 who knew exactly what was wrong with me. As bad as the diagnosis was — a disease that could be neither treated nor cured — I wept with relief at having a name for it.
In part, the diagnosis was so hard to come by because I got sick a few years too early. Now, far more is known about CFS, and it is beginning to be given more credence by the medical community. At a press conference in the fall of 1990, when it was announced that CFS was associated with a newly-discovered leukemia-like retrovirus, Dr. Paul Cheney said of those with the disease, “You see their entire social structure, work interactions, and family units come crashing down over the several years that can typically affect these patients before they begin to recover somewhat.” With grand and, I believe, unconscious ambiguity, he added, “It is an unbelievable illness.”
Part of the problem is the name. Calling this Chronic Fatigue Syndrome is as inadequate as calling emphysema Chronic Coughing Syndrome — it highlights one symptom and doesn’t touch the reality of the disease. Labeling it the “yuppie flu” is as misleading and demeaning as labeling Parkinson’s disease the geriatric shakes. In Great Britain, CFS is known as myalgic encephalomyelitis, a name with heft, the kind that might earn the disease greater respect in America. But until the gravity of the disease is accepted, the media would most likely seize on its acronym (the ME disease?) to create yet another unflattering image.
One reason medical research can’t settle on a name is that it hasn’t identified a specific cause or pathology. Also, the symptoms are so diverse that it’s hard to find a label that encompasses them all. But the primary reason its name remains at issue is that naming is an act of recognition. If doctors can’t diagnose the disease through blood and other laboratory tests, X-rays, brain scans, or MRIs, it doesn’t exist. Furthermore, recognizing this disease as legitimate has serious political and economic implications. Far more research would have to be funded. Government agencies and private insurance carriers would have to respond appropriately. As with AIDS — originally regarded as the “gay cancer” — CFS has been assigned pejorative labels that diminish its seriousness, implying that its victims are getting only what their lifestyle warrants. It isn’t surprising that this disease has had a hard time in America.
A friend I used to run with visits me at least twice a week. He uses my home as a health club, changing for runs and cooling down in my living room while we talk. It’s wonderful, as though my illness has changed nothing between us except my ability to be beside him on the wooded trails we once ran together.
People I used to work with call several times a week. They sometimes bring lunch and spend an hour with me at the round oak table in my dining room. They’ve stopped asking under what names I stored various memos on my word processor at the office because I can’t remember, but they continue to make me feel important in their lives.
My two children, grown and living their own busy adult lives, are in touch almost daily. They’ve progressed with me through the typical stages of denial, fear, anger, acceptance; now they’re simply here for me.
With a disease for which there’s no known treatment or cure, you’ll try almost anything. If it was written about in the CFIDS Chronicle (an invaluable journal published by the Chronic Fatigue and Immune Dysfunction Syndrome Association in Charlotte, North Carolina), I tried it. If it had been talked about in my support groups or over my informal national phone network and didn’t involve voodoo, I considered it.
The hardest thing is to do nothing, to go home and rest, which is what most of the doctors I saw suggested.
My doctor, fortunately, was among the few nationwide who had worked with CFS and kept up with current research. Besides, he was a rock guitarist on the weekends, so I could trust him. Because it had been anecdotally reported to help, we tried intramuscular shots of immunoglobulin, a notoriously painful injection. This was the stuff they used in the fifties to try to ward off polio attacks if people had been exposed to the virus. It didn’t help me.
We tried small doses of Naltrexone, a drug that’s often used to help addicts going through detox because it blocks the effects of such drugs as opium and morphine. The theory behind its use on me was that it also stimulates the endorphin receptors and has a positive effect on immune cells. It was a sweet red liquid I kept beside the tabasco sauce in our refrigerator. It didn’t help either.
We tried the standard CFS therapy — a wide array of antidepressants taken in lower than normal doses, which didn’t improve my condition and seemed to bring all my bodily functions to a halt. I could sleep when I was taking them, but I could barely wake up all day. We tried antibiotics. My doctor explained the concept of “aggressive rest” to me, helping me to view bed rest as an active form of therapy rather than as doing nothing. Some of the literature about CFS reported the clear link between this disease and the development of certain cancers, particularly lymphomas, so doing nothing was a terrifying thought.
I went to a number of alternative care providers — naturopaths, chiropractors, and spiritual healers. I tried acupuncture for several months, lying there with needles stuck in my face and neck, my chest, my toes. It seemed to make me more exhausted, though it did relieve my headache, and being in the presence of the practitioner was soothing. I took something called Minor Blue Dragon and something else that was the consistency of sand. I tried ground thyroid and powdered vitamin C, Astragalus-10 and CoQ-10. I put vitamin B-12 up my nose but drew the line at putting garlic cloves up my ass, which a reader of one of my articles about CFS advised during an unsolicited late-night phone call. I didn’t buy the biomagnetic mattress that another concerned reader offered to sell me, nor — as someone else suggested — get rid of all the appliances in my house that produced magnetic fields. There were countless offers to sell me herbs and elixirs. I didn’t start smoking after someone wrote to say that nicotine had cured his virus, nor did I start eating whole limes after a World War II veteran wrote to explain that it had cured his. I did not get all the fillings in my teeth replaced, though I considered it.
I agreed to participate in an experimental fourteen-week program assembled by Oregon Health Sciences University for a half-dozen of us. It combined occupational therapy, nutritional and psychological counseling, relaxation techniques, and group interaction in an attempt to teach us to live more effectively with our illness. We were tested at the beginning and end of the program to determine whether we’d benefited. After fourteen weeks, I still couldn’t march up and down the stairs at the acceptable pace, or perform the memory exercises properly, or sleep for more than two hours at a time.
By the end of fifteen months, I had exhausted the options.
I never imagined that I’d be a medical research subject. Let doctors conduct experiments on my body? Well, maybe to find out why my performance as a runner kept getting better once I passed forty. Floyd the Medical Marvel: I’d graciously let them study that. Put me on a treadmill and watch me run for hours. But certainly not to find out whether some new drug was safe and effective in treating a dysfunctional immune system. That was for other people. But it’s astonishing how quickly serious illness can rearrange your imagination.
For the past year, I’ve been the subject of medical experimentation — a volunteer in the clinical field trials of a new and promising drug called Ampligen. Half the one hundred patients in this trial are receiving the drug and half are receiving a placebo. I don’t know for certain what I’m getting, but I’ve gotten worse in the last year. My partner in the study, a former world-class race-walker and mother of three young children, is fully recovered.