Finding My Purpose in Life Despite Duchenne Muscular Dystrophy

Finding My Purpose in Life Despite Duchenne Muscular Dystrophy

My faith in God and my spiritual and practical gifts have helped me to find a purpose worth living for in a body and world that make it difficult. Because of Duchenne muscular dystrophy, I can solve all of the small inconveniences in front of me without understanding the big picture. I believe each of us is here for a reason and we owe it to ourselves to find our purpose. Otherwise, we are mere leaves blowing in the wind.

Over spring break, I was on a retreat at Hume Lake in California. The tranquility of nature around me and the wisdom from one of the speakers forced me to consider my purpose seriously.

View from the road around Hume Lake. (Photo by Hawken Miller)

Chuck Madden is 78 years old and lives what I consider to be a life full of purpose. During one of his talks, he showed us that each part of his day serves the highest goal for his relationship with God, family, work, and health. As he spoke, I realized that if we aren’t completing each item on our to-do list with the intent of pursuing our purpose, then what’s the point?

We all get caught up in a cyclone of “the next thing.” I’m guilty of this myself. Whether it be at work, home, or school, we put our heads down and go from one task to another without ever asking ourselves why. Chuck called this the “tyranny of the urgent,” where the urgent overtakes the important.

“The real question is what do we want to do?” he said. “If we do not know, sooner or later we’ll realize that whatever it was, there isn’t enough time left to do it.”

With Duchenne, I likely don’t have the same amount of time as Chuck, which means that I’d better figure out my life’s direction now. My purpose has made itself clearer each year since I first earnestly developed my mission in an eighth-grade English assignment.

One of my most influential teachers, Mrs. Wilder, had us read the book, “This I Believe: The Personal Philosophies of Remarkable Men and Women.” The collection of essays, based on an NPR series of the same name, revolves around the simple prompt “this I believe.”

I wrote my own version, “This I Believe: Purpose through God.” In it, I discuss the peace I have found through my daily challenges, which have grown in the past nine years, because of my belief in God. I volunteered to read my essay in front of the class.

I wrote: “He [God] has shown me that no matter what my problems are on this Earth, coping with them for the relatively short time we have and spreading the news of the Lord are much better than feeling bad for myself and doing nothing with my opportunities to spread the word and do the most good under Him.”

My friend Luke had to finish reading the essay for me because about halfway through, I broke down in tears. What I had said spoke truth to me in a way I hadn’t expected.

Working on election night coverage for USC Annenberg Media, a student-run news outlet. (Photo by Alan Mittelstaedt)

The essay was circulated among friends, family, peers, and parents. A close friend’s mother passed away under tragic circumstances a couple of years later. Shortly afterward, my teacher told me that my words had made an impact on her. I realized that people are searching for a direction and each of us can help to point them in the right direction.

Back at Hume Lake, I scribbled out my reformed life’s purpose. I’ve had a lot of life experience since eighth grade — it was time to make a specific, attainable goal.

I wrote: “Become an effective writer and communicator through journalism and practice so I can bring the word of God to those who need it most.”

Everyone has different goals, and I understand that some people don’t believe in God and others hate to write or speak publicly. However, I think that each of us is uniquely and wonderfully made to accomplish a higher goal in life. Without a purpose, I could not have believed that my life had meaning. I would have eventually given up hope and emptied my soul. It’s easy to do when you have Duchenne.

Your life has a purpose and meaning no matter what others may tell you. However, you need to take the time to reflect and figure it out. For me and others, Duchenne is just a small part of the big picture. It’s impossible to climb a mountain without a rope to guide you up. Let your purpose be that rope.

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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 Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.

One comment

  1. Ejiegbu Christian says:

    Thanks.
    I Wish my son Charles could talk or make use of his hands. Pray for us that we get a drug in India that could help him.

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