A privilege of my being a-little-more-well-known nowadays is hearing from parents of children with Hemiplegia & CP. Common questions understandable arise. How was it for me growing up? How bad are my symptoms? How do I manage with relationships, work, education?
My vantage point now is an interesting one. I’m a hopelessly devoted dad to a beautiful boy who knows nothing of disability. I, of course, remember all too clearly a childhood with Hemiplegic Cerebral Palsy. I know now just how important a parent’s hopes and dreams for their children are, and also how cruelly disability can seem to dash them. Most importantly, I’ve learned that where there is determination, there is hope.
I am right hemi due to CP from birth, suffering brain damage due to delivery complications. I died, basically. Most of me came back, but not quite all of me. No-one then knew the extent of the damage. Diagnosed age two, the news was a huge shock to my parents. They were told I would never walk or use my right arm.
My mum was not accepting of my presumed fate. She learned everything she could so that she could give me daily physiotherapy. The routine was agonising for me, gruelling for her. It was not to be in vain. Through daily physio I eventually learned to walk with braces, around the age of 4.
Childhood was tough; it would be silly to pretend otherwise. A petition was started in the village against me attending the local school. I shouldn’t be integrated with non-disabled kids. I would hold their children back. There were already schools for kids like me; “Special” schools (a revolting term).
My parents fought hard to get me into mainstream school. I felt we got the last laugh; I excelled academically, achieving consistently above my age. I felt held back by the other kids. Irony tastes sweet, even to a child.
Physiotherapy and other interventions continued, and at the age of seven I had an Achilles lengthening procedure. It was a frightening time. Unable to walk after, it would take months of rehab before I would again. At age 7, being told it may take 6 months to recover is unfathomable. 6 months? 600 years, more like. Still, 6 centuries passed (in my mind), and I was walking unaided by the end of the year.
Not much later, I caught the musician bug from my guitar playing father. It seemed ridiculous; I could barely use my right hand, yet I’d decided that rock guitar god was the ideal job for me. It wasn’t just something I wanted to try; it was something I wanted to go down in history for. I dreamed big. My parents dutifully got me a guitar. They saw it as a form of rehabilitation, nothing more.
Long story short, I worked hard. I got my Hemi hand moving. I was going to win this.
It’s been a struggle, but the rest fell into place. I’ve played in bands since my teens, and nowadays I work as musician full time. I’ve played hundreds of shows, and my music has fans all over the world.
I also get to put something back. I work with charities and technologists to develop technology to enable disabled musicians. I also work with organisations to improve access and opportunities for disabled artists on the live music circuit. Every day is an adventure in conquering the impossible, and doing what I love.
I have to hit the gym hard to maintain my mobility, but to be honest, I enjoy exercise. I attended a Paralympic Intro Day, and definitely got the bug for pursuing sporting ambitions. Right now, I’m too busy with music to commit.
As regards relationships, I’ve never felt that my disability was a barrier. Teenage insecurities seem oddly normalising; everybody has something to worry about at that age. Nowadays I’m very happily taken with my beautiful fiancee and our impossibly cute little boy.
Parenting forces me to think about how my diagnosis must have affected my parents. As I watched my son take his first steps, at just 11 months old, I couldn’t help be reminded that didn’t happen for me. These simple, normal milestones were delayed years by my condition.
I’m matter-of-fact about my achievements. Only when I talk to others affected by Hemi & CP do I realise how my accomplishments are perceived. The greatest reward in becoming known for what I do is being visible and approachable. As I’ve said to many parents, a diagnosis of Hemiplegia is not a death sentence. It seemed bleak for me once, but it got better. I absolutely promise you, it can always get better. After all, my parents were told I wouldn’t even walk, much less achieve anything. It’s worth remembering that every time I walk out on stage to an applauding audience…