Surviving 10 Years After SCA: A Decade of Memories and Challenges

Well, I made it to 10 years … and OMG, what a 10 years it’s been! I’m not going to lie. It hasn’t all been a bed of roses. The first 12 to 18 months were pretty horrific, to be honest, it definitely got worse before it got better. SCA UK, which I am now so so proud to be a trustee of, didn’t even exist back then. So, it was all up to me to figure things out on my own. I had no idea of the enormity of what had happened to me.


man standing near ruined buildings
Photo by Dan Cristian Pădureț on

I felt abandoned by the NHS and, at the same time, grateful to them for saving my life.

I didn’t understand why I had no energy, and I couldn’t do even the simplest of tasks without getting out of breath.

I didn’t know why I could remember that the square on the hypotenuse equals the sum of the squares on the other two sides, but I couldn’t remember what I’d had for breakfast or even if I’d had breakfast.

I didn’t understand why I felt perfectly ok one day and bordering on suicidal the next.

I didn’t understand why I didn’t want to go home at the end of the day. A feeling that got stronger and stronger until it got to the point that we had to move house.

Oh, and I definitely didn’t believe for one second that I would survive 10 years!

But survive I have, thanks in no small part to this group and some of the amazing people that I’ve met along the way … you know who you are 😘

Guinness World Record event in 2018

I now have a decade of memories that I otherwise wouldn’t have had. I was sad to lose my father 12 months after my arrest and my mother just a few weeks ago, but I now have happy memories of both of them that I didn’t have before and at least I didn’t put them through the trauma of it being the other way around. I lost my greatest friend in the whole world, in the cruellest of ironies, to an SCA, but before she passed, Sue and I were able to share some amazing times together with her and her husband in New York.

I’ve visited countries that I never thought I’d visit, made friends that I had no idea I would make, got stuck in Istanbul for the best part of 18 months through Covid and got stuck in South Africa for 2 months, again thanks to Covid (in the middle of their summer, that one wasn’t so much of a trauma, to be honest! 😇).

I’ve survived a stroke, an accidental overdose through not having sufficient short-term memory to realise that I’d already taken my tablets that morning, a “cardiac event” on a flight from Milan to Birmingham that had to make an emergency landing in Paris, a ride on skyscraper rooftop rollercoaster in Las Vegas (that wasn’t my best decision ever 🤷‍♂️), a collapse on a private beach, miles from anywhere in southern Turkey just after emerging drunk from the sea at 1 am (don’t ask! 🤦‍♂️) and numerous other scrapes and escapes that will take far too long to detail.

Forgotten, Not Forgotten

Sue, Gareth and best friends John and Alison

Throughout all of this, she stood resolutely by my side and has been my forgotten patient, the amazing Sue Bullock. Never once wavering even in my darkest of moments, and never once doubted me even when I doubted myself. We’ve smiled, laughed, shouted and cried, but we’re still here, still going strong, still making memories ❤️

Here’s to the next ten years !! 🍾🥂

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