Encounters with the Invisible
by Dorothy Wall
From the time I was a child, I knew I wouldn't stay home like the traditional woman. I'd come of age in the liberating '60s, knowing there would be a place for me out in the professional world. So it was with a cruel irony that in the fall of 1995 I found myself in bed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), so ill I could barely walk across a room. Overnight I had become housebound, staring each day through bedroom windows at the gangly branches of my neighbor's Monterey pine. My throat was so sore I couldn't talk for months at a time. I was too weak to write a short note. My partner, Bill, and 23-year-old daughter, Lisa, hovered around me, ferrying in soup and hot compresses.
For two years I lay in bed, staring through the plastic skylight above me at the white pinwheel blossoms of our flowering apple tree, while my head spun with the ideas I didn't have the strength to record. It was unnerving to find myself consigned to bed, like some nineteenth- century neurasthenic woman. I'd worked hard to leave home, my mother's world, to have a life of teaching, conferences, parties, speaking engagements. As someone who prized an active, vocal life, I was struck by the way ME/CFS had made me a shut-in, muted and invisible, mimicking the forced confinement of women in earlier times.
The ironies compounded. Everyone around me, anxious and confused, wanted me to get well and rejoin the world, NOW! But I knew that in order to heal I had to stay where I was, studying the pattern of blue sky behind a clump of brown-green pine boughs. In the fall of 1997, when I could finally pull myself up in bed and put pen to paper, I wrote a cryptic, four-page essay, "Staying Home," about what it meant to me to be confined. That was my starting point, but I knew I had more to say, about invisibility, silence, language, and about the terrible lack of understanding of the severity of this disease. Another essay appeared, and another.
I wasn't thinking of writing a book, nor did I want to write only my daily account of ME/CFS. I was grappling with all the implications of having an illness that has been dismissed by the medical community as "all in the head," trivialized by the media and misunderstood by the public, yet is painfully, palpably real to me and hundreds of thousands like me. My limp body, barely strong enough to take a shower or walk downstairs, was at the center of an intense struggle over medical knowledge and authority. Whose story should have priority, the patient's or the doctor's? The more I wrote, the more I realized that I couldn't write about ME/CFS without engaging the medical and cultural issues this illness raises.
By 2001, as I grew stronger, I began interviewing physicians, researchers and advocates in the ME/CFS community. What they said was surprising and illuminating. Increasingly, I saw the ME/CFS story as a revealing drama of competing needs and interests: of entrenched medical convictions, bureaucratic intransigence, irate patient advocates, of a handful of maverick physicians and whole battalions of very ill patients. I spent the final years of writing linking my personal experience to the fascinating questions forced by ME/CFS and other controversial illnesses (fibromyalgia, Gulf War syndrome, multiple chemical sensitivity): How are diseases recognized and defined? Who has this power? What are the consequences?
If ME/CFS is a wrench in individual lives, it is also a challenge to our culture's triumphalist ideas about Western medicine: that biomedicine can understand and treat most diseases. ME/CFS is multicausal, chronic and complex. It won't be understood in the laboratory alone. It raises difficult questions about environmental contamination, immune dysfunction and the brain/body interconnection. It reveals the limits of a mechanistic, pathogen-oriented approach to disease, and the importance of valuing the subjective stories of patients as much as test results.
My book was born of inner conflict and frustration, and an urgent need to be vocal, to have a voice. I needed to put on the page the stark details of this illness, and the stories, questions, insights, desires and debates that had careened through my mind for so long. I needed to restore the image of myself as a person in the world, to find my place after having been displaced. If the work of illness is restoration, in the case of a contested illness like ME/CFS, it is also the work of illumination, of making visible what has been unseen: the struggling body, the faulty enzymes and T cells, the medical myths that have erased this illness.
It's easy to think of chronic illness as a bland stretch of days interrupted by a meal or a friend. In fact, the hours spent lying in bed while the body labors to heal are tumultuous and textured, thrusting the ill person face to face with conflicts far beyond the bedroom. I wanted readers to see this complexity, and I wanted to reframe the ME/CFS story from one of problematic patients to one of problematic and limited biomedical orthodoxies. Of the 800,000 people in the U.S. with ME/CFS, only an estimated 10 percent will recover fully. Most will vacillate through cycles of remission and recurrence. Some get worse. The majority heal slowly and venture, as I have, back out to the world with a renewed appreciation for each step along the way.