It’s fitting that I start writing my first column as I begin my next major life transition. I graduate from the University of Southern California (USC) in May and start a journalism internship in Washington, D.C., in June. I’ll be moving from the home I’ve made on the West Coast to the strange land of the East Coast. I know it won’t be easy, but then again, life already hasn’t been easy, thanks to my fatal muscle disease, Duchenne muscular dystrophy (DMD).
I was diagnosed with DMD when I was 5. By that time, my parents noticed I had trouble keeping up with kids at school and on my soccer team. It was a heartbreaking discovery for a 5-year-old. At the same time, I gained some degree of peace knowing what was wrong with me.
I lived a normal life despite my diagnosis until middle school. The early teenage years are tough for everyone, but the disease made my teenage years even harder. My symptoms started to show between the ages of 11 and 13. I remember coming home from school in tears, frustrated that I couldn’t participate in physical activities with my friends. I had to use a scooter between classes and I felt like less of a person.
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Things improved slightly throughout high school. I found a great group of friends at the school newspaper and on the Model United Nations team. I realized I could be just as involved in other activities without using my muscles.
I’ve been a football fan since I watched former Texas Longhorns quarterback Vince Young hustle past the pylon in the game’s final seconds to win the 2006 Rose Bowl against my USC Trojans. So, when I started high school, I wanted to be involved with the team somehow. With a push of encouragement from my dad, I met with the coach the summer before my freshman year. I helped keep the practice schedule, note stats during the game, and film. My most important role was providing motivational quotes for my team at the end of practice and some games.
Since I graduated from high school, and now soon from USC, my passions and purpose have become clearer. I want to become a journalist to give a voice to communities that don’t have one. Through my involvement with Christian Challenge, I’ve realized I can use the natural and practiced skill I have of writing and communicating to advance the kingdom of God. At my parent’s foundation, CureDuchenne, which they founded shortly after my diagnosis in 2003, I’ve taken on an advocacy role by speaking on behalf of those affected by the disease.
My life hasn’t been easy, and it won’t get easier as I enter the next chapter of my life. DMD has forced my parents, friends, and me to come up with creative solutions to unique problems. For my eighth-grade school trip to Yosemite National Park in California, my dad designed a backpack for me to ride in during our hikes.
In Scouting, I had to do workarounds for a couple of merit badges, and instead of doing a strictly physical Eagle Scout project, I repainted a map of the United States at my elementary school. At USC, as I lose more and more mobility, I’ve had to learn how to humbly tell people about my needs and ask for help, especially during a recent reporting trip to Tijuana, Mexico.
Duchenne muscular dystrophy is part of my story, but it doesn’t define me. That internal motto is the fuel I use to move forward every day. I couldn’t have attended USC, pursued a career in journalism, or traveled the world if I let my disease define me.
I hope this column helps you realize that you, too, can do big things with a bit of creative thinking, stubbornness, and the right attitude. Check back on Mondays at 9 a.m. CST to follow my journey.
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.