Hereditary

How Dystrophy affected me in a way I never expected

I don’t know if my parents knew I was going to be disabled, I’ve always felt weird asking. If they didn’t, they definitely found out the second I was born. I came out backwards, upside down, and with my legs wrapped around my head (I would kill to have that flexibility now). But I also exhibited the telltale sign of Muscular Dystrophy: Floppy hands and feet. I was immediately taken from my mother for observation because there was something wrong with my heart, too.

By the time I was 4 I had been diagnosed with mitral valve prolapse, heart disease called a cardiomyopathy, and congenital Muscular Dystrophy. Anyone with an early 90’s medical textbook could have told you the latter. I didn’t crawl until I was 1, walk until I was 2, and I was the only person in my family with any kind of physical disability like that. I hit the genetic lottery and the jackpot I won was better parking at Costco.

Growing up, I always felt like I was missing a piece to the puzzle that completed my individuality. I never knew what specific type of dystrophy I have. “Congenital” is really broad and, to me, boring. There’s something about the specificity of it that I felt was severely lacking and I didn’t know who I was because of it.

In my early 20’s, one of my doctors thought she could narrow it down and find a specific diagnosis. After multiple blood tests and a PTSD episode triggered by being stuck with a needle for over an hour, I still didn’t have an answer. It made me give up. I was starting to believe this would elude me for the rest of my life.

When I was 25, a really good friend who was a med student at the time referred me to Emory Genetics, a lab a Georgia that was helping disabled people with genetic sequencing. Even better, there was no blood involved, only saliva. A bodily fluid much easier for me to produce. Ask my dentist. After filling up a tube with my spit and putting it in the mail, I found my white whale.

Ullrich Congenital Muscular Dystrophy. Dumb name but, whatever. It’ll be renamed to Steve Way Muscular Dystrophy one day.

After 25 years, I finally got my answer. I had the full picture of my identity at last. It also gave me a lot of context and understanding about my body. It was a random genetic mutation and while it’s possible I can pass it to my children, the wonders of modern medicine that feel straight out of a Grey’s Anatomy episode can detect it very early. Since I was approaching my thirties, I figured I should get tested and make sure everything was going… swimmingly.

I have not talked about this publicly until now. After a year and a half since receiving the news, I’m still bothered by it. For my entire life, no doctor ever told me it was even a possibility. That my specific type of Muscular Dystrophy would prevent me from naturally having children. The only thing harder than hearing that was reconciling with the fact that all the medical professionals I’ve seen throughout three decades let me down. Either thinking I would be dead by now or I would never find someone who would want to have a family with me.

I've taken steps to make sure the second part is an option for me. A bunch of potential Stevie Jr.’s are currently hanging out in a freezer in Westchester, NY. My future child will be a test tube baby and that’s okay. They won’t be loved any less. Except if they grow up to be a Mets fan.

I’m here if anyone reading this wants to talk about similar circumstances.

Solidarity forever.

-Steve