Living in a body with FOP is like being forced to ride a completely different roller coaster every day with no time in between to catch your breath. I never know when the next drop (unexpected flare-up) might be, if I’ll stop going in loops (seemingly never-ending pain), or if it’ll be a smoother ride…
Category: Living with FOP
Body Image & Insecurities
“Some people think I am my body and treat me with prejudice or pity. Some are just curious. It took years, but I have learned to ignore the stares and just smile back. My body has taught me to respect my fellow humans — even the thin, able-bodied, beautiful ones.” -Lisa Sandin, “I Am Not…
Health Update: Flare-ups
“Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.” -Michael J. Fox I’ve been dealing with multiple flare-ups of new FOP bone growth for the past two months. It’s very painful, frustrating, and exhausting. The most prominent flare-up, my left hip,…
A Letter to FOP
The Mighty has daily posts dedicated to “finding strength, joy, and beauty in disability.” I’ve followed them for a while now and am always touched by the inspiring stories written with such grace, strength, and hope. For the entire month of March, they have asked their readers to write a letter to a diagnosis that…