For a year I lived with a diagnosis of Friedreich’s ataxia, a genetic, neuromuscular disease whose symptoms are quite close to mine.

My symptoms: Since 2005 I have been aware, at first dimly, of a mobility disorder developing in me; today, in 2015, I walk with a cane or impressive walking stick, stiffly, like I am wearing very tight jeans; I have little sensation in my lower legs and even have moments of “body confusion” in which I think I am moving my right leg but my left leg moves. I sway when I stand and fall/walk into walls and my sense of not knowing where I am in the world contributes moments of comedy to my day. I was in my mid-30s when the symptoms began to attract my attention, which means the symptoms began to appear several years earlier.

Instead, it is very likely that I have a disease called spinal muscular atrophy, but I am grateful for that year in which I thought I had Friedreich’s ataxia. This is because all that I knew upon learning my diagnosis was my diagnosis—Dr. M, my neurologst, did not even hand me a tri-fold pamphlet, “So You Have a Potentially Life-Shortening Condition,” if such an item is even available—but there were online groups ready to embrace someone like me.
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