These days I dream of walking through hallways, up steps, and down city streets. Every night for months my mind has built dream narratives around searching for my wheelchair, feeling ashamed in the familiar way one feels ashamed during dreams of appearing naked in front of an audience. In these dreams, I walk easily from place to place searching and believing with all my heart that I have been exposed as a fraud, as a fully ambulatory person who somehow desires rather than needs the chair. A friend theorizes that these dreams might be about integrating my wheelchair into my sense of self, about developing a relationship between my body and my chair. I suspect that his theory is partially correct, but these dreams also seem to be about the shame that resides at their center, about the exposure of emotional weaknesses I am deeply reticent to admit.
I am ashamed of the callowness of my initial feelings about the people I encountered in my neurologist’s waiting room. Right after my MS diagnosis I went for my first “follow-up” appointment. I knew that MS has an idiosyncratic disease progression, that the level and type of disability that each of us experiences is not necessarily the same as the level and type of disability others with MS experience. At a time when I should have had feelings of camaraderie with others in that waiting room I used my knowledge of the idiosyncratic nature of MS progression to distance myself from them. I tried desperately to convince myself that my disease course would be less aggressive, that while I might walk with a cane or have a tendency to stumble, the sheer force of my will would keep me from needing a walker or wheelchair, that I would always be pretty damn close to able-bodied. I was sure that the people in that room who used walkers or wheelchairs—and even those who simply walked with pronounced limps—had diseases other than MS or forms of MS completely unlike my own. I told myself that I felt compassion for them and their disabilities, and that pretense somehow convinced me that I had license to “other” them, to see myself as unlikely to ever be as disabled as they clearly were.
Every time it became clear that I needed “the next” mobility aid – a cane, then a walker, and now a power chair – I resisted, telling myself that these devices were meant for people other than myself. I came to realize that unbeknownst to me, I had spent my life working hard to move unnoticed through physical space. Among friends I laughed and talked with fervor and gusto, but I had developed an absolute dependence upon maintaining as much physical silence as possible. Though I would fight to the death for others’ right to take up space, to need physical room and accommodation, I loathed the thought of needing space and accommodation of my own. I was, I admit, a bigot, having distanced myself from the disabled other. My penance: my body has become what I once feared. Now when I enter my neurologist’s waiting room I am pretty certain that someone there sees me and thinks, “That’s what scares me. I can’t become her.”