Living Your Best Life with a Disability
By Josh McDermott
Wednesday, May 1st, 2019
Recently I was at a family gathering. Every year, one of my family members asks me the same question. “Josh, you look good. Are you getting any better physically? Can you work out to regain muscle? There has to be something you can do.” My answer every time is no. Nothing has changed. I can barely lift a gallon of milk. Yet, I am happy just taking it one day at a time.
I have a disease called limb-girdle muscular dystrophy. When you have MD, you cannot build muscle. Slowly over time, the disease depletes the muscles in your body. Unfortunately, there is nothing I can really do. I choose not to take medicine. I just want everything to happen naturally.
I’m in pain a lot. Sometimes I randomly get tired mid-day because the disease is attacking my muscles. It sucks. I went from being able to walk, run and play sports to using a Go-Go® scooter throughout my day and occasionally walking. And now, I use an Edge 3 Power Wheelchair with iLevel® full time. I understand that eventually I will probably not be able to do half of the things I currently can do. For example, If I drop my phone on the floor, I always curse and complain about having to pick it up. After I pick my phone up, I always say ‘well, at least I can still pick my phone up.’ I understand that one day in the future, I will drop my phone and I won’t be able to pick it up. I have a progressive disease. Yet, I’m happy. I have a right to be pissed off, but I’m not mad. I live a great life. I try not to take things for granted. I’m 25 years old, and it would probably surprise you how much I have accomplished and all the places I have traveled. I finished high school and went to college. I’ve served as an ambassador for the Muscular Dystrophy Association and I participate in MDA Summer Camp every year, working with kids like me who have the condition.
Surprisingly, when I wake up in the morning, I don’t even think about having a disability. It’s just another day to me. Transferring from my bed to my power wheelchair is like a regular part of getting ready. it’s the equivalent of you putting your shoes on. You wouldn’t go anywhere without shoes. I don’t go anywhere without my iLevel Power Wheelchair. It gives me the freedom to be independent and active, so I can live my best life.
My Edge 3 with iLevel is a tool that allows me to fulfill my purpose in life, which is to live my best life every day and educate people about my disability. I go to trade shows with the Quantum team, give speeches for events and organizations and do everything I can to show people that it’s important to be optimistic about having a disability. But, you also need to be a realist. Realize the situation you are in and make sure you are getting the most out of each day and not focus on the negative. I am thankful for what I can do and what I can control. I do not live in fear and I strive to be the best version of myself.
Josh McDermott is a consumer advocate for Quantum Rehab®. He is a public speaker and has served as a goodwill ambassador for the Muscular Dystrophy Association. Josh lives in New York and loves to travel. Click here to learn more about Josh.