Hi everyone!
Welcome to my space to share with you the tales of my life.
I am currently 27 years old, just turned in March. I’m from Scotland, originally Stirling – yes, like Braveheart, then moved to Glasgow a few years ago before moving to live in New Zealand for a year.
Over the last year I have been travelling in the Southern Hemisphere, my passport has been stamped in the likes of Bali, Vietnam, Hong Kong, Taiwan and ofc New Zealand. While I have experienced and been immersed in the things others have available to them, I also have the additional feature, let’s call it, of having a disability.
How did it happen?
When I was a kid, at some point during my second year on the planet, I became unwell with a virus. My explanation and understanding comes from asking my family questions growing up, listening to doctor’s opinions and guidance and a weird desire to understand the logistics of how my body mechanically compares to others without my condition.
Chronic Inflammatory Demyelinating Polyneorapathy
So aged two, the illness took it’s life altering toll. I went from being a flower girl at a family wedding to not being able to move any part of my body. It’s hard for me to explain but essentially when the virus made its way through my body, it resulted in all my nerve endings being attacked by the white blood cells leaving them unprotected and exposed. My whole peripheral nervous system was destroyed meaning the pathways for my brain to send signals to my body were gone. Being so young I thankfully don’t remember much, I had no ability to move, walk, eat, swallow, stop my eyes rolling around in my head, I even had to be squeezed like a lemon to keep things moving.
Briefly explained, my recovery and rebuilding of my life is really still an ongoing thing. My mum always remembered the first movement I made post illness was a twitch in my middle finger (I can’t remember which one) and the ball started rolling from there. Hospital treatments, surgeries, standing frames, learning to walk over and over, physiotherapy, exercise, acceptance, growth, coping, crutches, wheelchairs, braces and a pair of trusty splints etc. and here I am today.
Splints, you say?
I sometimes take for granted that everyone will know what splints are, what they do and why I wear them. To me I feel like they have huge luminous flashing arrow lights pointing to them everywhere I go, when in fact some people notice and others don’t (or at least tell me they don’t). They are very basic in form – terrible in this day and age frankly, plastic that covers the back of my legs from the knee down round to under my foot. Two straps, one ankle and under my knee, both legs, a few bits of padding and that’s my daily companions in a nutshell. Don’t worry they will be a reoccurring theme here so they’ll be back.
Why now and why a blog?
I have been asking myself this for a while! I am championed by my friends to ‘just dae it’, don’t really have a reason not to, yet I’ve had this intro (the easiest bit) sitting as a draft for about 3 weeks. Classic case of being my own worst enemy. So if not now then when?!
On paper I am completely paralysed from the neck down meaning that the machinery used to detect signals and activity cannot pick anything up from my brain. In real life, I’m not paralysed, meaning my brain has completely rewired itself to be able to send the signals it currently does around my body. If I can rewire my brain, I can write a blog.
SPLINT UP, LOOK SHARP 