Surprised myself by having fun while writing here yesterday. Thought I’d keep a good thing going so I’m not here out of guilt, but for my own amusement.
My penmanship may become sloppier over time. Symptomatic of my obscure and unpredictable disease.
Peroneal muscular atrophy is known by its more common name, Charcot-Marie-Tooth disease. It’s apparently hereditary, although I’ve never heard of anyone in my family having it, and it usually shows up in the late teens, but it can sometimes present later in life. My feet look a little like Roman arches—like I’ve been gripping bars with them all my life. I’ve a Gumby spine now, thanks to the resulting scoliosis. My shoulders and arms sometimes jiggle as the result of tremors caused by wasted muscle. I use a wheelchair to save my feet the torture. I’m constantly in pain.
My doctor goes berserk whenever she sees me: with her dark eyes sliding to the floor, she says, Most people with Charcot-Marie-Tooth get treatment and don’t need wheelchairs. Nobody lets it progress like you do, Dr. Ripley. She called my case unprecedented. I love that word. Before my diagnosis I’d been an expert in British literature; I still am, though with a more focused specialization. After a few years the brilliant honey haze of Jack Daniel’s slid away, and I started to see new patterns in the literature I love, and when I began studying those patterns, I began seeing myself in a deliriously wonderful way. Like a yogi, my body is continually bent into new positions, from which I must work to see clearly. I love my life. I love the Residence. I love the university. My condition will worsen over time. I’ve accepted that. In fact I embrace it, because the way I see it, and as I mentioned earlier, my disability has given me the proper perspective. The more disabled I become, the clearer I’m able to see the world. The sheen, streamline and harmony fall away and I see the fat, jagged, grimy gristle of the soul. I’m forty-six now; by the time I’m fifty or fifty-five I hope to have x-ray vision.