RETURN TO TABLE OF CONTENTS
Winter 2004 

Whatever Doesn't Kill You Makes You Stranger
By Kate Franklin

I stood outside, blinking as my eyes adjusted to the bright sunlight. Behind me sat a squat nondescript building marked with only its address, 6700-B, and inside, a windowless room, darkened for slides and crudely drawn overhead projections. As I stood waiting for a cab to take me back to the hotel, exhaustion set in. I had held it at bay during the morning with sugar and caffeine, but now I could feel it settling into my bones. I looked for a place to sit, but there wasn’t a bench or even a ledge. Across a concrete expanse I could see only 6700-A, the companion, mirror image of the building behind me.

The fatigue was familiar, expected. Ten years before, I had come down with what I thought
was the flu. I never recovered. Ultimately I was diagnosed with chronic fatigue syndrome, a baffling condition with a constellation of symptoms including profound exhaustion, joint and muscle pain, headaches and the like. I had come here, to the National Institutes of Health, for a "State of the Science" meeting — invited by the scientists to convey the patients’ perspective on the illness, to "put a human face on it" for researchers, many of whom had never before encountered an actual patient. I was anecdotal evidence at best, just one story, uncontrolled for all of life’s uncontrollable variables, a single data point for the scientists to ponder.

I had written a speech and practiced it, but knew I hadn’t captured the essence of the illness. How to describe the feeling of chronic unwellness to those blessed with health? The speaker before me, a prominent researcher in the field, gave me a clue. "Scientists don’t know the cause of many symptoms," he said, "fatigue for example." He talked of lying in bed, feverish, with muscles aching and that deep sense of exhaustion that accompanies the flu. We don’t yet have the science to explain what intricate processes are at work, what chemicals or enzymes are producing that profound weariness, he said. We just know, he went on, that if we stay in bed resting a few days, and let the virus run its course, we can pick ourselves up and go on with our lives.

"Imagine," I said, as I rose to speak, "that you have the flu, not for days, but for months, or even years — that you lie in bed for weeks on end — that you feel as tired when you wake up as when you finally drift off to sleep again. That’s what it feels like," I told them. "Imagine."

I told them how the illness had divided my life into "before" and "after." How I was just living my life until that one day 10 years ago when I got the flu and didn’t get better. How I was just living my life until that one day when I wasn’t, couldn’t anymore. Couldn’t work, couldn’t bike, ski, swim. Couldn’t do anything really except lay in bed or on the couch, resting — waiting for the fog of fatigue to lift.

I spoke for myself and other patients I knew — how we went from doctor to doctor in search of answers and found none. How we turned in desperation to vitamins and herbs, then bee pollen, shark cartilage, evening primrose oil, then magnets, crystals, then faith healers. How we combed through Internet sites of patients’ accounts of the illness for a lead to that one magic substance that would return us to our former lives.

Was I depressed? one scientist wanted to know.

"Chronic illness is depressing," I said. "It brings with it so many losses, loss of our careers, hobbies, relationships, and with those losses too, a loss of our former identities, our former selves."

"Imagine," I said to them, this distinguished panel, gathered at the epicenter of biomedical research, "that you could no longer pursue your career, that you were no longer the accomplished scientist, the expert in your field that you are here today."

Imagine, I thought, that your biggest achievement was coping, getting through life, day after day, navigating through pain and loss, the twin shoals of unceasing illness.

"What do patients want most?" another of the scientists asked.

I knew that many patients had been lobbying for a name change, "chronic fatigue syndrome" sounding so insubstantial, so trivial so as to subject its sufferers to ridicule. In England it’s called "myalgic encephalomyelitis," a much more impressive-sounding illness. It was a subject of some debate on the Internet. One patient’s sly suggestion was "living death syndrome," and another, my favorite, "the disease formerly known as chronic fatigue syndrome," accompanied by a cryptic symbol.

For me though, I didn’t really care what it was called — I just wanted not to have it anymore.

"We want a cure," I said without hesitation. We’d often fantasized about it at meetings and support groups and told each other what we’d do if it happened. A big party, I’d always said, one that lasted for days. We’d drink and dance and revel in our wellness.

"You’ll all be invited," I told the scientists. "We’ll carry you through the streets on our shoulders." They laughed, the tension finally broken.

Afterward the scientists approached, some to thank me for my candor, others to ask additional questions, musing over my answers as if they

might hold the key to the mystery of the illness. Patients surrounded me too. Some pressed their cards or handwritten notes into my hands. One had just a hug. "You told my story too," he said.

This morning I had come to hear the scientists’ perspective on the illness. We sat at the conference table together — 12 researchers and one patient — around us the room filled with other scientists and patients observing. I didn’t speak but sat silently at the table — a reminder to the scientists that their findings in the lab somehow translated into a real toll on real lives. I sat as they talked about double-blind, controlled experiments, of "robust" science, "elegant" studies — as they marveled over unexpected, puzzling, "interesting" results.

Perhaps a "stealth virus," one suggested with concurrence from the others — arriving unheralded, wreaking its havoc with the immune system and then vanishing, undetected. Maybe some environmental trauma that triggers a disruption of the neuroendocrine system, another mused, referring to that complex web of chemical messengers and nerve receptors that control our breathing, our heart rate, everything that our bodies do without our conscious direction.

"No party for you," the scientists joked with one another, echoing my comment of the day before, as each confessed his or her bewilderment over some aspect of the disease.

As I listened, I was heartened and disheart-ened. Smart, dedicated people were working on the problem, but the cause of the illness remained elusive, what we didn’t know about it seemingly overwhelming what we did.

I left at the lunch break when fatigue finally won out over my determination to stay and witness. As I stood outside, a scientist from the panel approached me and thanked me for my presentation.

"Most patients are so angry, so strident. They’re their own worst enemies," he scowled. "Don’t they know we’re doing all we can. If this were an easy problem to solve, we’d have solved it years ago."

Patients were angry. Many had been told for years that there was nothing wrong with them, that their all too physical symptoms were "all in their heads," the result of stress, of their inability to cope with their emotions or the demands of a normal life. The medical establishment, doctors and the government agencies responsible for the public health had been seemingly slow to respond — so slow, so painfully and infuriatingly slow as those stricken lay in bed, resting, waiting — and was just now, after a decade or two of apparent indifference to lobbying by patients and their families, rousing itself, shaking itself from its torpor to confront the problem.

"You have to understand," I said. "Many patients have suffered a long time."

As he turned to go back into the building, I saw Robert, one of the angry, strident patients, loping up the walk, pushing off his cane with every other step. I thought of my own folded cane in my bag, now used mainly as a prop when I needed to look as disabled as I felt.

Robert came and stood beside me. I cocked my head toward the building behind me. "What did you think?" I asked.

"There’s an old Chinese curse," he said, "‘May you live in interesting times.’ In our case, he said, the curse is ‘May you have an interesting disease.’"

I laughed and offered up my own illnessisms, perversions of meaningless adages that the well heap upon the sick. "When one door closes, a thousand others slam in your face," I said, and then my favorite, "Whatever doesn’t kill you most likely maims you horribly and ruins your life forever." Robert smiled and said, "That reminds me of an e-mail I got from someone. I have no idea if this guy meant it or if it was just a typo. It said ‘Whatever doesn’t kill you makes you stranger.’"

I started laughing again, at both the absurdity and the truth of it. Robert joined me and we laughed for a long time together, giddy in the bright sunshine, relieved at our temporary escape from the dreary room inside. I wiped tears of laughter from eyes.

"Well, there’s no question about that," I said as my cab finally pulled up. Robert waved goodbye and turned back toward the building. I got in, closed my eyes and leaned back into the seat, surrendering finally to the fatigue, feeling it close around me.

As I flew back to Boston from D.C. later that week, my speech to the scientists went around the world, leapfrogging from computer to server to computer on the World Wide Web, posted there by one of the angry-patient-activist groups. I arrived home to a full inbox of e-mail messages from patients and their families. Some had questions; others offered just their thanks and encouragement.

A patient from Germany wrote of the illness as "a grey shapeless fog hanging over me," but added, "I have learned to accept it and adapt myself, my life, my habit of daily things to this given rhythm. I would even say that I appreciate beautiful things better than before. This state of illness, it goes up and down like a wave and I try to enjoy every peak consciously and to tolerate every down."

He apologized for his occasionally awkward English, needlessly I thought. I understood perfectly and recognized him as a fellow traveler, as one who goes through life, day by day, with chronic illness his companion.

Yes, I thought. You’ve told my story too.

The author became ill with CFIDS in 1990 and is currently working toward her master of fine arts degree in creative writing at Emerson College. Kate Franklin is her pen name.