In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MDSpotlight, or read the full series.
The year was 1999. I had just turned 3.
“Take him home and love him.”
These were the words of advice the doctors gave my parents when I was diagnosed with Duchenne muscular dystrophy (DMD), a rapidly progressive neuromuscular condition. The doctors explained that DMD would take my life before I graduated from high school. They said there was nothing anyone could do.
Adam Wechsler is pictured wearing a T-shirt for one of his favorite bands. (Courtesy of Adam Wechsler)
My parents didn’t accept that and began fighting for me. They got me genetic testing to identify my stop-codon mutation. They ensured I received treatment at age 6. They enabled me to enroll in a drug trial for my mutation at age 10 — I was the fifth patient. DMD wasn’t going to beat us down.
I learned this ethos of adaptation, perseverance, and fighting spirit by witnessing my parents. I’m now 29, graduated from both high school and college, and obtained a Continuing Education certificate in Geographic Information Systems. I’m passionate about utilizing GIS to design more sustainable and inclusive communities.
The path to get here wasn’t easy, and as my disease progressed, I had to find new ways to follow my passions. One of my first passions was for the natural world, particularly wolves. I dreamed of becoming a wildlife biologist, having spent hours watching Steve Irwin and Jack Hanna on TV. I tried to be just like them, searching for wildlife in my backyard (pro tip: don’t pick up snakes) and even traveling to Alaska when I was 10 for my Make-A-Wish trip to see wolves in their natural habitat.
By the time I was 16, I could no longer walk. As I began using a power wheelchair to navigate the world, my wildlife biology ambitions came to an end. But I found new ways to connect with the natural world.
I started an environmental club in high school and became an Eagle Scout, creating a virtual tour of a local park. I majored in environmental studies in college and led a team of students to a net-zero energy home design competition in Colorado.
If there’s anything I’ve learned from living with Duchenne, it’s that the only way is through. I must continue to live my life, at times through pain, but also to experience joy. In high school, I loved playing the drum set, sometimes performing on stage with friends. Although drumming is now difficult, I continue to find joy in music by attending as many concerts as possible. I’m up to 132 shows, just having seen Dispatch for the fifth time.
Duchenne has also brought me hidden blessings. When I was 12, I began attending Camp Jabberwocky, a summer camp for people of all ages with disabilities on Martha’s Vineyard. I’ve gone for two weeks every August since. I don’t intend to stop anytime soon. I’ve found cherished friends at camp, whom I never would have met otherwise.
I feel I’m right where I’m supposed to be. I could always make some improvements, which I’m actively pursuing. To me, that is the point of life: To find what we love, what brings us joy, what brings us passion, and to live the best life we can, with or without Duchenne.
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