How my attitude toward health checkups has changed over the years

Shortly after being diagnosed with muscular dystrophy in 1985, I returned to the hospital for a checkup and to review my treatment plan. I thought the doctors might tell me to eat an apple, take some aspirin, and rest up. I was 12 years old, so what did I know? In my mind, I’d go to the doctor, receive treatment, recover, and live happily ever after.

Not so much.

In addition to checking the range of motion in my ankles, hips, elbows, and shoulders, doctors tracked how long it took me to rise from sitting cross-legged on the floor to a standing position. I was timed and filmed walking up and down the dark green, linoleum-tiled hallway while being reminded not to hold on to the waist-high wooden railing. I walked back and forth while the doctors took notes, commented on my gait, and had me walk in shoes, then only in socks, and then barefoot.

I also had to climb and descend a flight of eight stairs. This time, I was allowed to grip the railing, but the pressure of the stopwatch made me wonder why I had to keep doing these things. “Geez, guys,” I thought. “I have muscular dystrophy. I’m getting tired. I know I look funny when I do all this stuff in front of half a dozen doctors watching and taking notes.” I felt like a lab rat.

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My parents were always nearby, and though my mother tried to hide her feelings, she wasn’t quite successful. I felt bad that she felt bad. My father used logic, telling me that I was contributing to important science for myself and others. He was right, but I didn’t care. I just wanted to be done with all of it.

I asked how often and for how long I would have to do this. I was told that these visits would occur every six months until I turned 18. At that point, I would be an adult and need to take responsibility for my own medical care. I didn’t realize at the time that I would be participating in these visits for the rest of my life. I didn’t like that scenario.

During my next couple of checkups, I gave one-word answers to the doctors. I stopped trying with the physical therapist. I was projecting my adolescent attitude by being a brat.

An attitude adjustment

This did not sit well with my father. Shortly after returning home from my third or fourth checkup, my father came into my room and gave me a stern talking to about my attitude. He framed it up by telling me that muscular dystrophy is permanent. Not only did I need to accept that fact, but I should also think about how the doctors felt, watching kids lose abilities. The tenor and attitude of all of the visits were up to me; I didn’t need to make everything more difficult with my teenage attitude. In short: Stop being negative.

This sums up my father: pushing me to reflect on how others may think and feel, while letting me know that I had the power to shape the mood.

From then on, I tried to bring levity, humor, and a positive attitude to all of the appointments. I joked with the residents when they asked me what hurt (“Everything, but especially my brain!”), and I started asking for my recent walking and climbing stats to see if I could beat my best times.

I still have cardiac and pulmonary appointments every six months or so. I still make the doctors laugh. I can’t control limb-girdle muscular dystrophy, but I can control my interactions in the clinic.

It took me a few years to understand that these checkups weren’t just important for me; they also help gather scientific data. All of us living with various forms of muscular dystrophy can contribute to medical advances by attending visits regularly. As we measure our range of motion, endure timed walking tests, and open up about our mental health, we provide doctors and scientists with increasing clarity about our lived experience.

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.