We am experience it at one point or another, that feeling where your inner self just isn’t represented with what you are seeing in the mirror. However, for me 2020 has made this drastically worse. I find myself looking at person who I always feared.
Growing up with a disabled parent is hard. My father was diagnosed with muscular dystrophy in the 80’s and my parents decided to not have kids. Luckily for me, they argued about who’d get surgery to ensure this and I popped up unplanned.
While my father lost his ability to walk, I was learning to walk late due to surgeries to fix a birth defect called Club Foot. So, my physical experience has never been “typical” in this life. I’ve always been slower, weaker, and different.
I didn’t get the right doctor as an infant for my foot, it was unseen in my little rural area. So, I ended up having extra surgery than I should have needed. I remember clearly seeing my reflection in the glass of our entertainment center. The scar tissue in my ankle had re occurred and it was twisting my little ankle sideways. Meaning I was walking more on the side of my foot than the bottom. My mom said she saw it in my little wet footprints that summer, and knew it was time to find a better specialist. We did and though my young memory is full of traumatic medical procedures, the doctor fixed my ankle to the best of his abilities. Although limited somewhat due to the botched first surgery.
I remember waking up alone in a hospital room and seeing my little arm wrapped in gauze onto a splint with a hook. It was meant to keep my IV in and hooked onto the side of the bed. My little self though thought they’d taken my hand and now I would forever be like Captain Hook! I screamed and cried, traumatizing the sweet Hispanic lady who was cleaning my room.
Fast forward and I never ran well in school. I never got good marks in PE and remember teachers yelling in my face to try harder with sit ups. I’ve always just felt like I’m trying to work through a world of very heavy gravity. Everything just weighs more on me.
When I hit puberty I got curvy. Then I hurt my knee. We were too poor for MRIs and most doctor’s acted like I just needed to rest it and lose weight. I would and it just got worse. At one point I could move my kneecap around sideways with just a slight pressure. It was constantly dislocating by then and horribly painful.
In my late teens I couldn’t tell if my knee made stairs hard or if it was something else. No one told me I could get my dad’s disease, but I knew it. Little me prayed nightly that if God needed me to learn from struggle, please just don’t let it be my father’s disease. Anything but that. I watched him slowly get trapped in a body he couldn’t move, struggling to breathe or even scratch his nose. Until it killed him before I was 16.
In my early twenties I got pregnant with my daughter. It was extremely challenging with a knee that would dislocate when just standing up. My pregnancy was lonely and painful. My partner worked nights and slowly became a monster who had no empathy and unlimited cruelty. Thinking if I could just be “normal” I’d save my little family. I rushed into reconstructive knee surgery less than three months after having my daughter via emergency c-section, with painful complications after.
That year was one of the worst in my life. Living alone with an abusive partner while battling postpartum depression and trying to heal from a knee surgery that felt more like I’d been hit by semi. I didn’t have internet. I didn’t have cable TV. I wasnt allowed to have anyone over. And anything I did around the house or to rehab was just never enough in the eyes of my partner. I finally broke and told him I needed to be tested for my father’s disease, something just wasn’t right.
This was something I’d warned him of from the very beginning of our relationship. So, it wasn’t like I had kept this dark secret. I even fought the idea of being in a relationship in the beginning, telling him of the difficulties that ensue with loving someone so sick. I was given platitudes that it wouldn’t matter due to love but I guess you can’t know until you’re in it.
Fast forward and his abuse shifted towards our child and I was done. He convinced me I deserved all his physical and emotional abuse but I knew our child did not. I became a single mom weeks before being given a muscular dystrophy diagnosis. All before I turned 23.
The years have chipped at my physical form to now I’m full time in an electric wheelchair. My diagnosis is muscular dystrophy? The genetic testing said no, but the testing is a difficult process. Doctors can’t even figure me out.
It’s so hard to live in a world where you’re simultaneously judged by your physicality and yet told not to allow it become your identity.
How can it not define me when it shapes my entire world?
Or how do I show the world who I am when my physical form is so damn far from who I truly am inside?
When will my reflection be of who I really am?