I was 13 when my world began to turn upside down, 15 by the time I started to feel the changes. It started as a slow degeneration; first consisting of a limp, however still enabling me to walk.
As the years went on, this became worse and worse. Until eventually crippling me to no longer being able to stand on my own two feet.
I had high expectations for my life. I had never wanted to be one of those people who depended on others to live. I wanted to have something that was worth living for.
I wanted to live an exciting life, to work at something I loved to do; something that paid well, had bonus advantages and didn’t require an impressive education to get there!
I was good at school, but never liked it. Early mornings wasn’t my cup of tea, and still isn’t.
At the age of six, I began taking swimming lessons, with the intention to become a confident swimmer in the water. My mam urged my brother and I to take it up, as she was never confident in water, she didn’t want her children to be the same.
As the years went by, I was excelling as a swimmer. Talks of me swimming competitively were in place.
I was delighted, my vision for my career was panning out nicely.
I became interested in gymnastics after seeing the gymnasts performing in The Olympics of 2008. The bars especially intrigued me, and I wanted to learn to do all those flips and spins.
I was now partaking in swimming and gymnastics, eager to extend and improve my talents.
However when I turned 12, just two years after I began gymnastics and six years after I started swimming, I found participating in these sports too hard to continue. I thought it was probably just the addition of school to the equation, the transition from primary to secondary school that year required more focus and took more energy out of me. I thought no big deal of it.
I was feeling discouraged to continue with these activities as my mobility began to shut down .
A few months later I was diagnosed with tight hamstrings, which didn’t faze me as I was convinced it would only be a temporary problem.
After an MRI scan at the age of 16, it was confirmed and I was re-diagnosed with ND (Neuro Degenerative) CNS (Central Nervous System) LCH. Unaware of the degeneration to happen, I continued life ignoring the fact my mobility was deteriorating.
Three or four years I had known my friends. Nine or ten years I had known my best friend. But I couldn’t face degenerating before their eyes; I thought by cutting them out, I’d be saving them the grief and embarrassment of witnessing my physical deterioration; but it only hurt me. To have my closest friendships destroyed by this condition which was to change my life. Developing friendships over a long period of time, only to lose them because of unwanted change was heart breaking.
Within the past eight years, this condition has turned my life 180 degrees around, I have had to watch my future potential achievements waste away. Most young adults are worrying about their looks, money or college/work. For the past eight years I have had deal with the additional distress of having my independence pulled away. I worry about degenerating further, to the point when I won’t be able to feed myself. Although not as rapid as before, I feel the degenerative aspect is still apparent.