I lost the ability to walk 22 years ago, at the age of 1o. For me, becoming completely non-ambulant happened quite unexpectedly, over the space of a couple of weeks.
Back then, there was little to no guidance or support. I didn’t have a full diagnosis and my rather nonchalant paediatric consultant wasn’t the best!
We didn’t have the Internet or social media to research and connect with others living with muscular dystrophy. And, until I reached adulthood, I didn’t know of anyone else with the same condition.
It was difficult enough leaving behind my group of primary school friends and moving on to a different middle school. I felt very lonely and was struggling to integrate, when came the added pressure of immobility.
Attending mainstream school, I was the only one with a disability amongst hundreds of physically fit, healthy, happy kids. My family and I were very much in the dark and going it alone.
Prior to this, I could only ever walk short distances – around school and home, but never steps or stairs. Then, at age 10, I suddenly found myself unable to stay on my feet, constantly covered in cuts and bruises from falling, and I didn’t know why.
I was referred to a counsellor, but met with them no more than 3 times, as I found it utterly pointless. How was talking with a complete stranger holding a clipboard going to help me? I couldn’t walk anymore and that was that. Get on with it, Carrie.
Yes, I was stubborn and sceptical even as a child!
People often ask me if I miss it – walking. In all honesty, I tend to fob them off with a half-hearted response; “nah, not really. Moving on…”
But the truth is, my life could and would be so very different if I could walk.
I recently asked my fellow wheelies, on Instagram, what they would do if they were able to walk…
Some of these answers really made me laugh, while others are more thought-provoking.
What would I do? Run! You wouldn’t see me for dust, mate!