If I could explain Madelungs Deformity to someone HONESTLY this is what I would say this:
Madelungs Deformity is a deformity in the way you’re wrists are formed—you’re born with it too and it begins in early adolescents usually at age thirteen. It started at age nine for me. When doctors describe it to you they use words like ‘ulna’, ‘radius’, and ‘growth plate’. But you don’t really hear them because you are in a hell of a lot of pain. It’s categorized as a connective tissue disorder. But none of that really explains what it’s like to have it, day after day. And no body tells you that it comes with chronic pain and depression, and that those things together can be a volatile combination.
It’s horrible and painful. Some days the pain feels like boiling water and I’m drowning in it, from the inside out.
It’s always there; it’s a rare disease/deformity/disability, and so few people know about it.
It’s the reason it took me almost six years to finish high school; the reason it feels like my body is at war with itself everyday; it’s the thing that keeps me alone and the thing that holds onto me. It was the first to introduce me to the deep and numbing, sadness that we call depression.
It likes to drag me down.
I’d tell you that because of Madelungs Deformity, this congenital deformity, I experience a type of ever-lasting pain. It’s pretty extreme pain, if I’m being honest, and it’s chronic.
It’s a sort of curse, but at the same time if I squint my eyes, I can see it as a gift or a blessing of sorts. I’ve seen the more of the world and more of humanity than I would have, had I been normal.
I’d tell you that it isn’t as bad as it once was, but that it’s still bad.
I have good days, and bad days, and days I just want to scream.
Along with being chronic, it’s frustrating because I just want life to start. I’ve had three surgeries, one two months ago. But while I’ve been busy fighting to live, my family and friends have grown bored of it, and they’ve all moved on. It’s not their fault really, I get it.
I’d say to you that sometimes I just want to prove this pain to people who don’t believe me, I want to show it to them.
I would tell you that the hospitals, surgeries, children’s rehabilitation centers, the tests, the medications, the appointments—those were all easier than the endless day-to-day struggling I endure.
It gets tiring, which is why I’ve resolved to keep my mouth quiet.
I’d tell you that with this problem there have been really bad times in my life when people have used me and taken advantage of me. Sadly, some of these people were very, very close to me. As in family close.
This is the third surgery I had—it took place on June 10. I’m recovering now. Recovering and floating. Waiting, once again, for life to start.
Because of what and how people judge pain people don’t believe me. I don’t look like I’m in pain….
Well that is because when I’m out I work hard—effing hard to not show it, the truth is, if they wanted to see it—they would.
The last thing I would tell you is that aside from all that I am more than the sum of my parts. I am more than the pain and the deformity.And I’m a survivor.