I have many full-time jobs, and managing MD is only one of them

Managing my condition is a full-time job. Muscular dystrophy (MD) has woven its way into more than just my muscles. It takes a mental toll as time goes by. The hours tick away. The cells tick away.

I was 12 when I learned of my diagnosis. I barely thought about what it meant. It wasn’t real in my mind, and when I lost my balance, fell, or lost the ability to do something, I simply pushed through it and got on with my day. At first, the disease was barely noticeable to others, and for years, I ignored it as much as possible. I viewed it as a nuisance that was lurking somewhere over the horizon.

Over time, limb-girdle muscular dystrophy (LGMD) robbed me of being able to run, climb stairs, bend down to pick something up, walk, lift objects, carry groceries, and cook. It robbed me of using my arms to feed myself, shower myself, and dress myself. It has taken away the ability to visit friends’ houses that have steps and narrow bathroom doors, public places without elevators, or hiking trails in the woods.

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My normal now

LGMD has also made areas of my life an absurd comedy.

I have three mechanics. Two for my vehicle and one for my power wheelchair. I have a place that services my Chrysler Town and Country, specifically for the entry ramp and high-tech computer gear that makes it possible for me to drive with my hands. I also have a local mechanic who does inspections, changes my oil, and monitors my tires. Finally, a third mechanic is on my schedule for wheelchair maintenance — motors, tires, switches, seat adjustments, and a bolt that attaches to the bottom of the chair that locks me into the van so I can drive. It all comes together, but three mechanics is the absurd part.

This is my normal. This and a primary care physician and a host of specialists, including a cardiologist, pulmonologist, endocrinologist, gastroenterologist, and mental health professional. Oh, I forgot: I also do physical therapy from time to time. And since I am in my 50s, all the doctors are worried about other health problems that men can have. So I have cancer screenings, skin checks, eye exams, and regular trips to the dentist.

Also absurd? I don’t tell anyone outside my family that living with LGMD is my full-time job. It doesn’t need to burden other people, too. I do not portray myself as a victim of things that are not my fault. This disease is no one’s fault. I do not feel sorry for myself.

Instead, I tell people that my full-time job was teaching middle school music for 28 years. That job alone involved teaching, learning, policing, counseling, and coaching — sometimes all in the same day. I retired from teaching a few years ago, and now work full time for a nonprofit that helps people with Duchenne and Becker MD live their lives to the fullest.

My other full-time job is being a dad. I think that’s the one I love the most. A wise person once said that if you love your job, you will never work a day in your life. To me, it’s all about filling my hours and days to avoid dwelling on the medical condition that progresses inside my cells.

I have always enjoyed staying busy. That’s my secret to keeping my sanity. The disease is everywhere all at once. But it will never control my thinking. I do not think about living with MD every hour of every day. It may sound strange, but even with all the stuff I do that relates to this rare, chronic disease, the act of managing it keeps me moving, thinking, and, above all, occupied with happy jobs.

When I stop to reflect on all of this, a more accurate description of my full-time job would be living my life.

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.