To the Cruel Disease That Tried to Break Me: You Failed


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 them in the same dirt I would fall facedown on years later.

You attacked my muscles slowly at first, just subtly enough for me to shrug it off as laziness and fatigue. I would work out hard, but you kept coming back harder. Eventually I would learn that the more I tried to preserve my muscle mass, the more you would destroy my muscle cells. You’re a cruel disease. You killed my cells when I was active. You killed my cells when I was inactive.

Three years ago, you almost broke my spirit. Falling face-first onto the sidewalk for the first time – you almost had me. The gravel, the blood on my hands, the torn jeans — those were minor inconveniences compared to the emotional toll it took on me. I’ve never felt so down in my life.

In your perverted world you took pleasure in my misfortune. You kept knocking me down over and over and over again, always making me fall right when I built my confidence back up to go outside and attempt to live a full life.

You turned the city I live in and the city I love – Boston – into a prison. I can’t go for walks anymore. I can’t go to many places in this historic city because they have staircases. For the longest time you turned me into a hermit, building up my immunity to cabin fever. I can no longer be spontaneous, as you require that I plan out how to get from Point A to Point B in excruciating detail. Some days you are miserable to deal with.

But in your ignorance and pride, you made a fatal mistake. You picked the wrong person. 

You have unlocked a determination in me I never knew existed. You thought my frustration, my sadness, my depression would cause me to withdraw from society and take away all the joy in my life.

You failed.

Instead, you’ve taught me the importance of relationships with friends and family. You have connected me to muscle disease researchers determined to reverse the effects you have had on my life. You may have forced me to see the world through a different lens, but that lens shows me the open doors, not the ones you have closed.

It turns out you are the weak one. I mean, you don’t even have an official name – I have to call the disease different names to different people depending on the audience because you are so hard to diagnose. Miyoshi Myopathy. Limb-Girdle Muscular Dystrophy. Distal Muscular Dystrophy. Whatever you are called, your reign is coming to an end.

You’ve given me a purpose in my life I never would have known. And that purpose is to make sure that you and all your muscle disease friends are defeated once and for all. Someday you will be the one that falls. Someday, when someone receives your diagnosis, you will be nothing more than a footnote in a medical record, treated and forgotten about.

Dear Dysferlinopathy,

You thought you could break me. But you failed. You will never touch my soul, the part of me that is unbreakable. 

I never would have known that without you coming into my life.

For that, I thank you.

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