4 things I’ve learned living with Muscular Dystrophy

A Grok Nation reader shares his experience living with a disease
By Joe SteigerUpdated on 08/13/2018 at 3:35 PM EDT \ Originally published 03/06/2017 at 9:09 AM EDT
Joe Steiger is a huge 'Big Bang Theory' fan.

My life is different than most people’s. I like to fantasize that maybe I am not a human but that, like Superman, I’m from another planet. And instead of thriving here under Earth’s yellow sun, it has made me weaker and that’s what was “different” about me. I was born with muscular dystrophy. But I don’t see myself as “Joe with Muscular Dystrophy”—I’m just Joe.  

Muscular Dystrophy (MD) is an umbrella term covering over 52 different muscular and neuromuscular diseases. MD causes progressive muscle weakness, which affects the muscles used for walking, breathing and swallowing. Symptoms vary among the various types of MD, from mild weakness to complete paralysis.

A few months ago, after 28 years living with MD, genetic testing identified the specific type of MD I have: Centronuclear myopathy, which is a mutation of the DM2 gene. So technically I am a mutant—like one of the X-Men!

Here are 4 important things I have learned because I live with MD:

1. Surround yourself with family and friends for support. I need assistance with everyday activities that most people take for granted, including dressing, bathing, toileting, meals, and getting around. I have learned how important it is to ask for help, and that it’s ok do so. I don’t need to do everything alone. One of my biggest sources of strength, besides my faith in God, is my family and friends. They have always been there to comfort and support me and never treated me differently. I was always able to be me.

2. Find confidence in being yourself. Every year people spend millions—if not billions—of dollars changing or modifying their appearance in hopes of fitting in and being accepted. As a person with MD, it’s glaringly obvious that I am different. And I have learned that that’s ok. I would be lying if I said I never felt uncomfortable with my body; when I am out and about, there are times people will stare at me because I am different. But I think about my late friend Ryan Walsh’s wise words regarding living with MD: “Why waste time and energy on things I can’t control?” I have the same mindset: I won’t dwell on what I am not and what I can’t do, but be confident with who I am and what I can do.

3. Don’t be afraid to challenge your limits/set goals. I have never let my disability stop me from doing things I want to do; as a highly competitive person by nature, I don’t want MD to “win” and hold me back. Knowing I was never going to be the guy to win a footrace, I found other ways to be successful and challenge myself. In school, I always tried to make better grades than everyone else; and when I was in Scouts, I wanted to reach the rank of Eagle Scout faster than anyone else. (I succeeded!)

I am a big superhero/sci-fi geek and I have always followed the various comic book conventions online. I always imagined how cool would it be to go to one of these conventions and this year, I thought, “Why don’t I just go?!” I asked a few friends if they wanted to come and this past June, we went to AwesomeCon in Washington D.C.  I had the best time! There is no reason for a handicapped person to be unable or afraid to go to a comic convention; the staff were able to assist with anything I needed to make the trip possible.

I’m also a huge fan of The Big Bang Theory—the show resonates with me deeply because it has shown the world that it is OK to be different; like I’m different. I even have my own Facebook group, Big Bang Theory All Access, where I post and discuss everything and anything about the show with like-minded fans. I thought it would be really cool to go to California to see an episode filmed. I worked and worked at this dream, disregarding everyone who said it would never happen. One day, Simon Helberg (who plays Howard on TBBT) and his wife took notice of my presence online and emailed me about coming to see the show taped.  

In January of 2015, I flew across the country on my Big Bang pilgrimage of sorts. I attended a taping, met the cast and had an amazing time.  It was by far one of the best experiences I have ever had.  

I draw inspiration from quote by Jack Harbaugh (father of Baltimore Ravens head coach John Harbaugh). He always told his kids growing up: “Attack the day with an enthusiasm unknown to mankind.” I feel like that’s what I try to do every day despite my challenges.  How can I face the day with positivity and make it great?

4. Have faith. People often ask me how I manage to live with MD.  I tell them that my faith is one of my main driving forces that keeps me going; that God doesn’t make mistakes. I believe that God made me the way I am for a reason; I just may not be able to understand right now what that reason is.  I like to think I was given the challenge of living with muscular dystrophy because God knows I am strong enough to do it.  I strive to show God – and everyone – each day that I won’t let MD define or stop me.  If, in the process, I can inspire other people to never give up their dreams, that is a bonus.

Editor’s Note: Joe Steiger died on July 31, 2018. If you would like to give to the Muscular Dystrophy Association in his honor, please click this link.

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