Living with Duchenne muscular dystrophy but choosing opportunity

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. 

Nobody chooses a life with Duchenne muscular dystrophy (DMD), but there still are choices for how to live that life. My name is Ash Brittenham, and I’ve been living with Duchenne for 28 years. In that time, I’ve had successes and losses, but growing up, my mom gave me as many choices and opportunities as she could. I had the option to take steroids. When informed of the side effects, I realized that the short-term benefit was not worth the long-term effects and decided not to take them.

Ash Brittenham is pictured outside his home in Vermont. (Photo by Ash Brittenham)

When I was 18, my family and I moved to North Carolina from my home state of Vermont. It took a long time to get my resources set up, but once I did, I gained more independence. Medicaid-funded caregivers got me up and helped me with my day. Vocational rehabilitation paid for my online sound engineering program from Full Sail University.

After moving into my own subsidized apartment, I started a treatment that has provided me with some long-term wins. I also adopted a sweet, sassy chihuahua to ride on my lap and sleep in my bed. Living in my own space was very meaningful to me as someone who grew up in the Independent Living Movement. This was the kind of thing I marched for in Washington, D.C., chanting “Our homes, not nursing homes!” I lived in my apartment for seven years.

After my caregiver agency dropped me, I moved back to Vermont with my mom a year ago. The last year has been filled with a lot of uncertainty, but also hope for what’s next for me. Though I was reluctant to move back to Vermont, I do feel more connected to my community, friends, and family here. I’ve been able to go on some outings with two of my friends with Duchenne. I’m also setting up a free comic lending library in my neighborhood.

I am managing to do things that bring me joy despite intense chronic nerve pain and mounting care and political concerns. Even with caregivers, a lot still falls on my mom, who is getting older. I will continue to march, carry my signs, and advocate for independence. I hope to set up a living situation with a few of my friends with Duchenne where we can hire and share awesome caregivers.

My advice to people with complex conditions is to keep an eye open for opportunities, and when you see one, take it. Although a lot of things may be outside your control, you still have choices in how you want to live this life.