“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.
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.
San Diego, California (October 2015)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.
In my eyes, you are completely and utterly perfect.
…And I love you.
Shivaun
Palm Desert, California
You’d be surprised how we perceive the way people look at us. I realize now that people are usually looking at others to read their faces & body language as a way of communicating. Stares are usually out of interest or curiosity instead of judgement. You are a brave & intelligent girl Jasmine.
Phenomenal post, lady! You have endured so much and truly you have shown resilience. Despite the different circumstances, I can relate with this and I know most athletes could too, particularly females. Loving the confidence that comes out in your writing style!
Jasmin – Although our situations are vastly different, I also have a hard time accepting my body the way it is. Someone posted a video of me playing the piano the other day, and I couldn’t even appreciate how good it sounded because all I could see was how huge I am! Thank you for reminding me that I am not my body, and that it’s my soul and spirit that really matter. God Bless You!
Jasmin–this is a wonderful post. You are such a good writer! Well done.
Very well said Jasmin. Thank you!
Amazing transparency in this post, my extraordinary daughter! I am so proud of you! You are really a great writer. I so appreciate how you get right to the nitty-gritty of FOP. The honesty, openness and fearlessness expressed in this post was exceptional. You have shed a bright light on a vastly, important topic.
You are amazing, Jasmin, and so wise. Keep on writing and inspiring.
A very encouraging post, Jasmin. So many people are dissatisfied with themselves, this or that isn’t just right. Your outlook is cheerful and your honesty beautiful.
What a beautiful young lady you are Jasmin! Your post is soulful! To see your mile wide smile in the San Diego photo reflects how I see you – seizing life and enjoying the positives of life. Your words are so inspiring to me and your strength and courage are right there in your beautiful smiling face! You continue to touch my heart, mind and spirit with your generosity in sharing your vulnerabilities. You are more confident than most for expressing yourself. Love XOXO
Great post, Jasmin! I often think about how so much depends on the luck of getting whatever DNA we’re pushed into when we’re born. And then there’s the family we’re born into – a LOT of how we deal with things depends on them too.
Hey Jasmin, that you for this excellent and thoughtful post. Bravo to you. Karen