Duchenne Has Forced Me to Reflect on My Own Mortality

My parents tried to shield me as long as they could from data that revealed the average life expectancy of patients with Duchenne muscular dystrophy (DMD).

Once I grew older and more curious, I finally came across those numbers, and they scared me. I might die before I hit my 30s, fall in love, and have kids of my own. Even living with a fatal disease, I’ve realized no one really knows when it’s time to depart this earth, and I better make the best of the time I have.

I don’t resent my parents withholding the realities of the disease until I found out on my own. They often told me if I did happen across life expectancy, I should take it with a grain of salt. I was doing well, and recent advances in medicine — such as corticosteroids that reduce inflammation — gave me a fighting chance. As a child, I was focused on school, Boy Scouts, friends, and play, and my parents let me have that.

We all grow older and wiser. I did, too. I understand the diagnosis, and I know nothing about my life is certain — a lot of it depends on a host of factors outside one’s control. Even with the average life span improving (many survive into their early 30s and beyond), I’ve still been forced at a younger age than most to take a hard look at my own mortality.

It was quite easy for me to spot differences between my friends who grew up without DMD and me. I looked weird when I walked or ran. Once puberty hit, they got muscular and started growing facial hair, and I did not. As I look back on my young adult life, I realize there are a few similarities, too. We’re all human, have independent minds, and have the gift of life, which can just as easily be taken away. 

Just because I have a diagnosis that may cut my life short doesn’t mean other people’s lives won’t be cut short, too. Mortality is the human condition, and at least I share that with all my peers. It’s comforting to know we’re all in this together. This realization made me feel more at peace, like my disease doesn’t have control over me anymore. 

I established that God gives us a fixed time on Earth, which we won’t know until the second we die. Each morning I wake up is a blessing. It’s a new day added to my human experience. But there’s also a responsibility we have in being alive. We have a beautiful life that should not be wasted. I may not have as much time as others, but I try to make up for it every day.

Making the best of our lives depends on the person and their circumstances. For me, it looks like building relationships. Every close friendship that I make, and the time I spend with my family and getting to know my God all add up to a life well-lived.

If I can remember all the experiences I’ve had with everyone in my life and smile, I know I will have done well.

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