“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 My Body” written/spoken word
I started writing notes for this post earlier this year. I’m not sure what exactly inspired me to write about how I view my body, but I do remember that the words flowed right into my notebook. I had a lot to say and realized I’d never fully opened up about this particular topic to anyone (so, I asked myself, why not do it publicly?!).
Body image has played a major role in my life ever since I was 9 or 10 years old; my body drastically changed each year due to the natural progression of my rare disease, FOP. My upper body was affected first, which is typical for people with this diagnosis. My neck became immobile, my shoulders became asymmetrical, my arms lost significant mobility, and bumps formed on my back. These unexpected changes took their toll on me as a preteen, triggering an unhealthy body image and a lot of insecurities.
Neck. Shoulders. Back. Hands. Legs. Feet. All of my insecurities are directly caused by my diagnosis, something I have absolutely no control over. My left shoulder appears to be shrugged and nearly touches my ear due to my severe scoliosis. The position of my neck causes so many inconvenient frustrations, like coats and thick scarves refusing to fit properly. I used to despise my long legs and the thigh gap caused by my left hip being more pronounced; I’m now unable to stand straight and my gait is uneven. I often feel awkward and uncomfortable in social settings, especially around a lot of people or while posing for a group photo.
I didn’t completely understand the science behind FOP when I was a young teenager, but I understood enough to know that I was physically different from my peers. I couldn’t participate in any types of vigorous activities, sit cross-legged on the floor, turn my head to see someone sitting next to me, or even just dance with my friends. These losses have been some of the most difficult to come to terms with. They’re all relatively simple actions, but my body has made them impossible for me.
As weird as it may sound, I feel safe in this body (other than the spontaneous progression aspect of it). I’m used to dealing with all of my insecurities and figuring out ways to overcome them, even if it’s temporarily. I’m used to the way I walk, kind of unevenly and penguin-like. I’m used to relying on assistive devices (reachers, long hairbrushes, back scratchers, wheelchairs or scooters in certain public places) to maintain as much of my independence as I can. I’m used to depending on other people for everyday tasks, such as styling my hair, reaching for something, or helping with my jacket in public. My body’s limitations have taught me patience, acceptance, empathy, and resilience.
I’m hoping that by writing this post, I’ll be able to look back someday and realize how much more confident I am in my body. It’s also my hope that my words might inspire someone, even just one person, to embrace all that they are. There’s courage in feeling vulnerable and there’s strength in being honest with yourself and others.
I am not my body. You are not yours.