When I was younger, maybe around the age of 7, I remember we used to have to run around the playground in primary school during P.E. I used to hate P.E because I was so weak and didn’t understand why I wasn’t as good as the other children. I vividly remember running around this track and kids would pass me and say “slow coach” and “catch up” and I remember the frustration of pounding my feet into the pavement as hard as I could muster and not getting any results. We later found out, many years later at the age of 11, that my weakness was due to Charcot Marie Tooth disease (a condition where nerves are damaged, causing muscle weakness).
I was in high school when my symptoms started to worsen. I had visited the doctors in my younger years but we were told that my leg weakness was due to when I had septicaemia as a baby. It was thanks to the teaching assistants at my high school who realised that my walking wasn’t quite right, that I finally got an answer. Eventually my condition got to the point that I was always using my wheel chair. I used to go around my house on my knees because the pain of walking was so excruciating. It was a hard time for me. People didn’t understand how I went from walking around school to using a wheel chair in the short period of 6 weeks, but I guess that’s the thing with disability – it’s something that can’t be understood, it just is what it is. People in school thought I was faking it! One girl even accused me while my friend was pushing me to class, she said “you can walk, I’ve seen you walk” and I replied “I can sometimes” like I even had to justify myself to her.
Anyway, time went on and I was getting more and more depressed. Isolating myself and never leaving the house, things were not good for me. Until a surgeon decided it was best to operate on me when I was 13. It was a pretty intense operation. He had to basically break my feet and put metal rods and screws in (still there to this day) and swap tendons around. I can’t really remember much of the initial aftermath of the operation, thanks to good old morphine. I know that it hurt a lot though. So I had to go through some intense physiotherapy, something I had fairly regularly since diagnoses. I also got an upgrade in my ankle foot orthotics (leg splints as I call them).
Fast forward 7 or so years and that brings me to now. I’ve had a few more operations to correct my feet as my condition means that I will just keep deteriorating. My hands are pretty bad too but I don’t think there is much that can be done. They are in a claw like shape and I don’t have much fine motor skills which makes daily tasks super hard. I also wear leg braces which strangers seem absolutely fascinated with but I don’t mind much because they’re usually just curious and very rarely rude.
Over all I’m positive about life with a disability. I am 20 now and I think I have fully come to terms with the fact this is how it’s going to be. I’m really passionate about all things disability, I just find it really interesting that there is a whole community out there and I want to engage with it more. Expect to see posts like ‘5 things not to say to a disabled person’ and some reviews of disability texts.
Thanks for reading. I’ve included some pictures, one is from my operation when I was a child, another is an xray, another is to demonstrate how I wear my leg braces totally unashamedly (I also think I look nice) and the fourth is just me looking happy. Please check out my poems section too. xoxo