Remarkable Improvement: From Sick to Disabled     

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My body began falling apart more than a decade ago. I can't stand long because I get dizzy and fall over. I can't tolerate exercise or repetitive motion: a stroll around the block requires an hour's rest. Leafing through a magazine puts my hands out of commission for half a day. Sitting in standard chairs is difficult, since so many joints, muscles, and tendons hurt. Thankfully, my brain developed a rapid-forgetting technique so I'm not overwhelmed by chronic pain. Unfortunately, this means I forget my topic in mid-sentence, and the marketable skills I had seem to have been, um, ahh, misplaced. In 1991 I had to quit even part-time paid work.

A decade's worth of doctors told me that it was all in my head. Finally, two psychiatrists suggested I investigate "chronic fatigue syndrome." After some auto-bibliotherapy, I realized this diagnosis was mine. Despite my physical deterioration it was very hard for me to admit that I had a disability. Luckily I'd worked with people who are blind and deaf, so I had learned what a difference a little technology and the right attitude could make. However, my co-workers took great pride in being healthy: they were simply deaf or blind. I didn't personally know any of "those people," you know, the ones who use wheelchairs. I denied I was "disabled" because I did not want to accept the stereotypes that ride along with that label. Gallons of ink have been spilled to debate the best term for disability. Euphemisms like "differently abled" or "physically challenged" sugar coated my experience. Yet, it was a struggle to think of myself as "sick," let alone "disabled." This is not just a word game, because it is hard to put on a filthy, tattered coat if you can hide your shivering.

THE ROAD TO DENIAL

Who would choose to call themselves incompetent, worthless, imprisoned? It seemed easier to pass as "normal," even if that meant never being comfortable with who I was or where I was sitting. I did not want to develop a new body image, cope with pain, relearn certain activities, modify my pace or, God forbid, use a wheelchair! Why, that was for "those people" not me. All these reluctances added up to a powerful engine of personal denial.

In addition to these voices in my head, there's the steady bell of the American individualist ideal: rely on oneself. In the popular imagination, disability is always a struggle. "Successful" people with disabilities "overcome" them. Societal guilt piled on top of denial made me sure that, if I could only develop a more positive mental attitude, I'd get better. This notion was reinforced by the "it's all in your head" crap from the ill-informed doctors I saw. I got American medicine's most basic message about illness and disability: If you're sick, get better or die. I learned that our national way of health adds insult to the injury of illness and disability.

A new image of disability has come from the dangerous reaction of our individualist ideals and our way of health. Totally invisible in the past, the few mainstream media images of disability we now see are the overachievers, the "super crips" who pump iron, dress like Geena Davis, work 80 hours a week, and never get nasty when discriminated against. If someone just gracefully accepts changes in one's body—well, that is weak. Like obnoxious "super morn" stereotype, the super crip is a convenient myth that keeps us so busy juggling that we forget to ponder how society's messages about us are wrong and harmful. My own history in the feminist movement, and a few great books like With the Power of Each Breath and The Me in the Mirror, taught me this "super" perspective stems from the notion that being disabled, like being female, is just not "normal."

THE WALKING FOOL

Denial made a walking fool out of me. It kept me away from the tools and services that could minimize my pain, exhaustion, and functional limitations. I was spending almost all day in the recliner because I was afraid of falling down. When I did get out, I would jealously eyeball those people who used canes, or crutches, or walkers. Why couldn't I use something like that? Well, my doctor didn't want to prescribe it for me. When I took a three-step header onto a concrete floor, further mangling an already-cranky hip, I realized that denial had become my real disability.

As time went on, both the capacity and the will to live on the edge of my physical limits drained away. My illness robbed me of the ability to spring back. Our "be all you can be" society may give greater approval to the walking fool than the rolling sage, but did I really need to listen to that old song? Why was I waiting on someone else's opinion? My doctor couldn't do my walking for me. So, I bought a four-wheel walker with a built-in seat. It helped enormously—a basket for my stuff, and a place to rest. Suddenly, I needed the curb cuts that "those people" had been fighting so hard for. Their fight became mine as well. Hell hath no fury like a former AB scorned! This anger was handy in motivating me all around town, but it wasn't enough to defeat physical reality. I fell a few times with the rolling walker, but the day its weight dragged me butt first down a metal flight of bus stairs was a turning point. I realized I was overdrawn at the energy bank.

I now celebrate July 17, 1993 as my "independence day," because that's when I got my power wheelchair—prescribed by a new doctor, of course. When I asked, he said, "Anything that gets you out and doing something is great." I finally have a pain-free place to sit that I can take wherever I go! Thanks to many years of activist effort, I know that a restaurant or movie theater will usually be accessible. Snug and relaxed, I have more energy for daily tasks and volunteer work. I can travel the ten blocks to the bus stop, roll on the lift, and travel independently. The less effort I spend walking, the more energy I have to think. I can go back to my favorite place on earth—the library—easily transporting pounds of books in the bag that hangs on back.

The down side is that some folks think they know something important about me when they see me roll by. The walking aids colored in the outlines of my invisible illness. Most readily accept that I may not do things just like they do. Although my illness has not changed my appearance, the chair speaks for me. A few other chair users have been quite nonplused when they find out that my chair use is "optional." My favorite trick is zipping up to a library shelf, then standing up to get a high book. If anyone's watching I say, "It's time for my Lourdes maneuver" before I break their preconceptions. That must mean I still feel the need to justify and explain. But, at least I'm at the library now, on a roll.

Of course, some people see the wheelchair as confining me, rendering me incompetent, worthless, incapable of speech, independent thought, or a place in their society. I can tolerate that, because I now accept myself and my disability. I have decided that walking is for "those people"—and I'm not one of them anymore.

fesse Kaysen has been an idealistic activist and a burnout; a bike mechanic, drafter, typesetter, tech writer, sign language interpreter, computer guru, and house vegetable. Her current life includes ESL tutoring, net-surfing and doing graphics for CFS-related projects.