The following essay was written by Zabrisa, a 16 year old with FSHD who lives in Arizona.
“Are you strong enough? Are you really sure you can do this, you’re not too weak?” “You’re such an inspiration for chasing your dreams.” “Smile, Zabrisa!” “You look so weird.” “Your ears–what are those things in your ears?” “Can you hear me now?” “So Zabrisa, your future?”
I’ve gone through an awful lot for the 16 years that I’ve been alive. Diagnosed with an uncommon muscle disease at 1 ½ years old, I had challenges and difficulties served to me on silver platters. I never liked thinking of myself as “disabled” nor did I ever think anything was wrong with me. I was just a person who happened to have a muscle disease. I didn’t let myself think about it; how different I was from the rest of them, how I’d always have to work a little harder to get where I’m going in life. I listened to the doctors rattle off facts about atrophy and degeneration of muscle tissue and scapular fusion surgery but never paid it much heed. I’d deal with it when I got there. Well now I’m getting there and it’s scary.
My disease is called Facioscapulohumeral dystrophy, or FSHD. An infantile diagnosis of this disease is a lot more severe and incredibly rare. At 1 ½ years old, they watched me intently and told my parents I’d be completely deaf and wheelchair bound by 11. Five years later and I’m not wheelchair bound, nor am I completely deaf. I say completely because I do have mild hearing loss, which is a side effect of FSHD. For this, I wear hearing aids. I wore my dark black hair long and down to cover my ears because they made me self conscious. I felt like everyone could see them even when my hair was down. I felt like my disability was blaringly loud with them in. It helped when I started seeing other kids with hearing aids and I began wearing my hair up. I learned how to be confident and how to care less about what people thought of me.
I’m not a miracle and I despise it when people think they’re being kind by saying what an inspiration I am for not letting my disease get the best of me. I’ve had adults tell me the oddest things regarding my condition, ranging from expressions of genuine concern to ignorant, insensitive remarks. Comments like these made me feel so small. It’s not as if I had a choice. I didn’t actively choose to have FSHD; it just happened to me and I dealt with it as I could. You don’t congratulate premature babies for their will to live so why congratulate me for wanting to be normal? I understand now why they made those comments; it’s a complicated disease that you don’t see every day. I’m an anomaly. Even so, I made it my life’s goal to prove that I could do more than they thought I could. I continuously pushed myself to my breaking point. I don’t know if it made me any stronger, but for a little while, I believed that I was relatively normal.
When I was younger, I learned to emotionally cope with my FSHD by letting my strong will take charge. I learned to compensate for things I couldn’t do. I got up every time I fell, determined to keep walking. Eventually, I had to teach myself how to fall so I wouldn’t hurt myself. I had to be strong mentally because I knew I couldn’t be strong physically. I didn’t want to believe that I was any different from anyone else. I refused to acknowledge the ever-growing presence of my condition, even though I knew that the walls I’d built would eventually, inevitably come crumbling down.
The walls started crumbling when I turned 13. At 13, I realized I’d never run again or hike the rugged trails of Mt. Lemmon with my family. 13 was when I started becoming out of breath just from walking. To be 13 and realize you’d never run another mile in your life? Physical education was always hard for me because I simply lacked muscle, yet I still believed I could run if I wanted to. I refused to see that I was getting weaker, claiming I was just out of shape.
I used to think that as long as I had the information and the facts, I’d be prepared for anything FSHD threw at me. That’s not the truth. I scoured medical websites and prodded my doctors for facts, answers, but it only scared me. I read about heart failure and difficulties during childbirth, lordosis, and eventual loss of speech. In an attempt to alleviate my hidden fears, I joined a support group for other people who have FSHD in hopes that just maybe I’d find someone like me. I forgot that most people aren’t diagnosed until they’re older and wound up reading their horror stories of waking up feeling paralyzed and not being able to breathe right. I was looking into a crystal ball of my future and I hated it. Then one day, I woke up feeling paralyzed and the sudden realization that I’d have to deal with it hit me like a ton of bricks.
For 15 years any talk of my disease had been shoved in a box collecting dust in the far corner of my closet. However, in the last year, I’ve had to take a closer look at my condition. In the next year and a half or so, I’m going to be out in the world with no one to hold my hand or catch me when I fall. I’ll be applying to colleges, learning how to drive, and preparing to leave home. Talk of future plans and scholarships buzz in my ears constantly like those flies that just won’t die. “Apply for scholarships, look up disability scholarships,” they said. I can’t say I wasn’t appalled at the thought. I’m not–oh right, I am “disabled.”
I wish I could say I accepted my fate easily, but I’m only human and a stubborn one of that. Over this past year, I’ve slowly come to terms with the fact that I will never be able to experience some things the way others can. My stubbornness will sometimes get in the way of reality and I’ll go back to thinking I’m invincible. Then I try to run and I’m face-to-floor tasting dirt and feeling the burn of freshly skinned knees.
I’m not invincible. I have a degenerative muscle disease. I’m stuck on the ground, but that’s okay. FSHD is a beastly disease that challenges my strength constantly. Some days, it’s a matter of getting up out of bed and others it’s a fight to keep myself upright and walking. Acceptance doesn’t happen overnight. I learned that it happens gradually, over a long period of time. It’s not easy, either. I had to stop looking in the wrong mirror even though it was one I found greatly attractive. Now, I take life one day at a time, one step at a time, and one task at a time. I haven’t given up yet, nor will I give up any time soon. My battle with FSHD has barely begun and I want to fight until the end. I will, too.