Wait.. there’s still something wrong with your legs? — World Cerebral Palsy Day 2023.

Originally published at https://www.itsthejw.com on October 6, 2023.

Well, who doesn’t love a sequel?

I thought to myself on the train back from London last night ‘It’s World Cerebral Palsy Day tomorrow, remember the other year when I wrote that piece about my experience of living with it, that went down well with the folks on LinkedIn!’

I could of course have just reposted said piece from 2 years ago and left it at that, but instead, I think it’s important to carry on the conversation and take a moment to recognise the day dedicated to the condition that has tagged along with me for the past 32 years!

Today (October 6th) is World Cerebral Palsy Day, a day to recognise and show support to those like myself and the 17 million others around the world who have cerebral palsy, as well as to highlight and raise awareness of the condition itself.

Cerebral Palsy is a physical disability that affects movement and posture, but more importantly, it is an umbrella term for a group of disorders that affects a person’s ability to move — two people can both have cerebral palsy and experience very different symptoms or levels in severity of the same symptoms.

Cerebral Palsy is a lifelong chronic condition, with symptoms that can worsen over time. Sadly, there is no cure.

Whilst I have been fortunate that my symptoms stayed relatively the same for large parts of my adolescent and adult life, over the past year I have begun to develop involuntary muscle spasms in my legs — most commonly at night which has made sleeping more difficult but I have also been prone to getting them during the day — especially in scenarios where I have been sat in the same position for an extended period of time.

Having always had the attitude of getting on with things and learning to live with the symptoms I’ve had all my life, it has taken some adjusting to get to grips with this new addition and does make me somewhat anxious for further developments in the coming years which could prohibit my movement or ability to do things I currently take for granted.

Like 45% of children diagnosed with Cerebral Palsy, I was born prematurely. I arrived at 28 weeks, in late July 1991, clearly desperate for a summer birthday!

For a long time, I had always attributed the cause of my cerebral palsy to a lack of oxygen at birth as a result of my premature arrival — however, recent research now indicates the vast majority of cerebral palsy cases are a direct cause of under-development of the brain due to premature birth rather than it being a direct link to any lack of oxygen — for what it’s worth, my mother had a very large baby bump with me, from the looks of it I was creating plenty of air in there and truth be told, I haven’t stopped talking since!

I had several operations in my adolescence, the results of which are the main reason I am still able to walk today — I’m forever grateful to the specialist team at The Royal London Hospital who did so much to give me the best chance of a ‘normal’ life experience. Along with that, I am ever indebted to my parents who fought so hard throughout my childhood to get me the maximum amount of help possible to allow me to be as mobile as I am. They still remain two of my biggest supporters to this day.

My other big supporter is my wife Jemma. That still feels weird to say, because she’s actually only been my wife for exactly 7 days at the time of writing this post! We got married last Friday after almost 9 years together on what was a fantastic day.

Yes, I know you’ll now want to see a wedding photo:

Truth be told, if you showed that image to a younger me, I’m not sure I’d believe it was real. I spent a lot of my teenage years facing a lot of rejection and stigma based upon my disability so I am truly blessed to have found someone as kind, caring and understanding as Jemma.

I was in a session at work yesterday where we were asked ‘If you could change one thing in the world, what would you change?’ It stumped me to begin with, because I thought it was a pretty broad question with a lot of possible answers. But then.. it came to me;

Studies have shown that on average, within the first seven seconds of meeting someone, a person will make a solid judgement of who you are. When your legs carry you into a room of new people looking like you’ve just fallen out of the pub, regardless of the time of day, it can feel like you’re starting on the back foot — add to that I also use a visible mobility aid.

The change I wrote down was for people to lose the ability to judge someone on a visual first impression — because the way that I walk isn’t what defines me.

For more information on Cerebral Palsy and World Cerebral Palsy Day, please visit the website.