Having Friedreich’s ataxia makes me unique, and I am one of 20,000 people in the world living with FA. Despite the extraordinary context of my life, I dare to call it ordinary. I am crabby in the morning until my first cup of coffee; I shower, get dressed, take my dogs for a walk, procrastinate, complain about my boyfriend, watch the hot show on Netflix, etc.

Yes, the way I do things is different, often requiring assistance and taking me more time, but I see them as the dull habits of any individual. I try not to dwell on the methods, (like the fact I need help); I just know I need more time than before FA. I used to be able to shower and get ready by myself in 30 minutes. Now, it’s a two-person job involving at least 60 minutes.

Is it frustrating? Hell yes. For instance, if I can’t sleep, I’d love to go to the kitchen and make a cup of coffee, but I need help getting into my wheelchair. Somedays, I just want to get through my routine as quickly as possible—usually, I have something to write that I want to type into my computer, or I simply want to be in my wheelchair where I have some control over my body. So when my caregiver gets distracted by my dogs being cute, my eyes roll, and I wish I could pull up my pants on my own.

But it’s what is necessary. I can’t change my body, and I am not waiting for the day I can. I’m living—what’s so rare about that?

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