In the years since my diagnosis, Deb and I have talked frequently about her cousin Suzie. In the mid-1950s, when she was in her late teens, Suzie was diagnosed with a progressive form of MS, and the constant progression of her symptoms curtailed any plans she had for attending college and enjoying a career. Instead, she spent much of her life confined to a manual wheelchair and isolated in her own home. By the time the Americans with Disabilities Act was signed into law in 1990, Suzie was already well on her way to being bedridden, and even if she had still been able to leave the house, the curb cuts, accessible businesses and restrooms, etc. would be uncommon for another two decades.
It’s hard for me to imagine Susie’s life because mine is so much less confining. I can go pretty much anywhere I like and I am allowed to become outraged when a business is not accessible. The fact is, though, to most able-bodied people I am either invisible or I am pitied. For those to whom I am invisible there is, of course, no issue. For those who pity me I am actively visible. By that I mean that my visibility makes them nervous. The walking person steps back, encourages those around to step back as well, and just generally makes a very big deal of my presence. I don’t know what to do in these situations; should I thank them? Should I ignore them? Should I act more disabled than I am? What should I do? What is appropriate? What shows my gratitude? I am sad as I write this. I am sad because this reminds me that my wheelchair is visible, that I can’t just be a regular person.
All my life the only thing I wanted was to be invisible, to be regular. In my youth I was very visible. My father let me know that I was visible. I was fat – so fat that others noticed and judged me. They thought of me as stupid because I was so fat. Later, I found that just the opposite is true. I am fat so others think I’m smart. They think I’m smart because I have nothing else to do but read because no one is interested in me because I’m fat. Even at my age (53), I worry about being fat. I want to diet. I want to fast. I want to do anything that will help me lose my weight. That is not possible, though, because I am so old. The older I get the less possible it is for me to lose weight.
To this day my mother understands my weight. That said, she doesn’t understand me. I am sorry for her because I think she lays every day in the recliner she loves so much. She watches her soaps as she has ever since my sister and I were children. The rest of the time she rests. I think she is tired; I think my grandparents treated her badly. They did not mean to, but my grandmother had lupus; she was tired and ill and had no time for a child. My maternal grandfather was a loving and gentle man, but he had to work so my mother was left alone with her mother who I suspect hurt my mother every day.