This week, leading up to #giveRARE Day on March 3, we are featuring stories of folks living with a rare disease. Today's story is from Casey Deakins.
Come back all week for inspiring stories of people who individually may be rare,
but are creating a strong community together.
I hate the word “disease.” It makes me sound like I should be isolated in a room with contact protocols in place by the nursing staff and visitors having to wear yellow gowns, masks, and gloves to enter the room.
“Disorder”… while still unsavory to me, is a closer term to describe myself. Myself is Casey McRae Deakins, born in 1986, making it into that year by mere days. I’ve always been known to do things in my own, unique, way. Some may describe my personality as goofy. Yeah, goofy works. I’m just a 28-year-old who hasn’t figured out, or doesn’t want to accept, that my childhood is gone. I guess I watched too much Robin Williams in my life and saw that humor does wonders to lighten moods.
While now I know that there are some situations where I have to be an “adult," humor gets me by in life and helps me deal with the everyday chaos (like rush-hour traffic….oy vey!). And the good news is, I like being me … I get a kick out of making people laugh and seeing their face light up. It makes me feel like I’ve done something right.
Here’s another side of me: I was born with a congenital condition known as Apert Syndrome. Basically, before I was born, my skull bones prematurely fused, along with my hands, toes and partially my shoulders and elbows. Even now, in 2015, this fusion happens with 1 in every 100,000 births. My syndrome is a cousin to Crouzon Syndrome, and many others. Basically what happened is a gene mutated and viola, I was created. I had my first surgery at 3 months old: a skull surgery to make room for my growing brain. I still have the scar from that, too, though it's hidden by my hair and faded.
I have lots of scars from my 20+ surgeries. My hands and feet are riddled with them. I had Apert Type 1 in my head (we think) but my hands were type 3, the most severe form. I lacked the muscle and blood vessels to get 5 digits, though I’ve done well with my 4 nubs. They can drive a car, control a horse, play the piano, draw, paint, type 68 words per minute, and much more.
At age 13, I received another diagnosis: Asperger’s Syndrome (on the Autism spectrum). While things now are greatly improved from even 2 years ago, I still have trouble looking people in the eye. Crowds bug me, especially when mixed with small spaces. Throw loud noises into that mix and good luck getting me inside those doors! However, I can make exceptions and self-accommodate. It's a skill I'm learning and practicing. Plus, I’m loyal, kind, loving, and compassionate ... in part because of what I've experienced in my life.
Overcoming some of my issues may take time, but if I open myself up to you, you’re family. No if's, and's, or but's. Now, that is not to say I’m going to spill out my secrets, but it means that I feel okay being me around you. I don’t have to worry about being judged because I can’t look you in the eye or because my hands look “weird.” Family and friends are everything to me. My world goes ‘round because of them. I am at my happiest when I am with friends and family. They are my constant supporters, encouragers, and much more. It's imperative to have good people in your life... even if you have to make the effort to find them.
On Tuesday, March 3, please remember that everyone is different. We all have our own “quirks” that may be "rare." But no matter how different we are, we're stronger together. Please spread the message "Choose Kind" on March 3 and everyday. That is my request to you!