The best way to challenge misconceptions about what it means to have a disability is to share our stories and celebrate our differences
When I was 2, I was diagnosed with central core disease (a disease that causes problems with the tone and contraction of skeletal muscles). Doctors told my parents, who were trying to wade through the unknown waters of this thing called “neuromuscular disease,” that I would never be able to walk on my own without a walker or crutches. But years of physical therapy, leg braces, a walker and a pair...
After the fear subsided, my diagnosis gave me a healthy perspective on life
Upon hearing my diagnosis — type 1 myotonic muscular dystrophy (MMD, or DM) — at the age of 20, I must admit, my world crumbled for a moment. I’ll never forget how the room seemed to shrink and spin, how the doctor’s voice morphed into white noise, and how visions of immobility caught my breath.
Living with diminishing physical ability means losing some independence, but it doesn’t have to mean less adventure
Independence. It is unique to the human experience. People fight for it. Toddlers to teens demand it. It is the way we live. So when a debilitating disease threatens to take away the thing we cherish the most — our independence — most of us channel our inner “Rocky” and refuse to go down without a fight.
My crutches were a source of anxiety about not looking ‘normal,’ until I learned to let go by just holding on to them
When I fell several months ago and couldn’t get up under my own power, I knew it was time to let go. Or rather, time to finally grab a hold.
For the first 26 years of my life, I could walk on my own with confidence. But on that day, as I propped myself up using the bumper of a car and a mailbox, I realized that was no longer the case.