Dysferlinopathy

There are days when it is hard to tell whether dysferlinopathy affects me more mentally or physically. One of the most overlooked aspects of a muscle-wasting disease is the unrelenting mental grind. I find myself having to constantly adjust to my weakening body. I worry about whether or not the next step I take will [...]

Of all the times, why did you walk by me at that moment? I had only bought my crutches two weeks prior after months of denial about my deteriorating condition. I’ve had them for two years now, but on that night, I was still getting used to walking around with them. They represented a disability [...]

“Everyone get up from your seats and find a partner.” “Oh no. Oh no,” I thought. “Keep calm.” It was barely an hour into the third day of my business school orientation at Boston College. Sitting in the warm auditorium on the fifth floor of Fulton Hall, I was listening anxiously to our guest speaker [...]

Dear Dysferlinopathy, I bet you thought you could break me. You came into my life after I graduated from college, an unwelcome visitor when I was just beginning to experience all the world had to offer. You took the dreams I had for my life and threw them to the ground. Spit on them. Buried [...]