Get to Know the Brains Behind Brain or Shine!
Get to Know the Brains Behind Brain or Shine!
The Day our Lives Changed Forever
In 2012, life was great. I was a freelance motivational speaker, travelling all over the country and working with teenagers in schools. It was such a buzz. We loved travel and my wife, Jules and I, were enjoying a cheeky week away on the beautiful island of Fuerteventura.
This is when the phrase ‘holiday of a lifetime’ took on a new meaning, and not in a good way.
I did something that I do many times a day, I went to the toilet. However, this time, I blacked out and hit my head. Yep, as simple as that! No horrific accident, no attack, just a simple trip to the toilet and our lives changed forever! When we got back to England, we went straight to A&E to get a brain scan. And the results were a total shock! We were told that my traumatic brain injury was so serious that over 95% of people didn’t survive, let alone be able to walk, talk and function ‘normally’. We knew he had done some damage, but we weren’t prepared for this.
There were haematomas on the right side and one on the left side and my brain had been misaligned due to the trauma and swelling. There was a fracture to my skull and right ear.
The next decision we had to make was whether I should have a Craniotomy operation. Now, this sounded scary. The operation would involve removing part of the skull to reach the brain and a hospital stay of 3 to 6 months. I’d been conscious for over a week by this point, and after some serious consideration, decided to not go ahead with the operation and take the risk that the two blood clots would disperse naturally. As a family, it was so difficult, but they supported my decision, and at the end of the day, only I knew how I felt inside.
The (Bumpy) Road to Recovery
I spent the next few weeks at home resting with a sore, groggy head. A couple hospital appointments later, we received some fantastic news. The swelling had started to disperse. Eight weeks later, I was given the all-clear on the final scan. Except for a few warnings about playing physical sports (man, I was going to miss football), we were given the impression that I could go back to living life as before. However, sadly this just wasn’t the case.
No one had prepared us for the non-physical effects of sustaining a brain injury. Gradually over the coming months, Jules noticed changes in my personality. Where I used to be laid-back, I started to get stressed very quickly. Where I used to have lots of energy, I started to feel really tired after a day at work. Where I used to be able to solve problems, I now struggled to understand the simplest of tasks.
After speaking to my neurologist, we were told that it could take years for my brain to heal. But as time went on, things started to get worse rather than better. I suffered from horrendous fatigue, mood swings, confusion, sleepless nights, nightmares, anxiety, and depression. We didn’t know what to do or who to turn to for help. We felt lost. And after six years, we felt broken.
The Turning Point
After visiting my neurologist again, he referred us to a brain injury hospital, just 10 miles from our home, which we didn’t even know existed. Actually, we didn’t even know the term brain injury existed at this point! Luckily, I was welcomed into a support group which changed our lives. We learnt what a brain injury was, how to manage fatigue and some of the other hidden side effects that were affecting me on a day-to-day basis. We slowly began to get our lives back on track.
Over 10 years on, I’m probably as good as I’m ever going to get. I still suffer with many of these symptoms on a daily basis, but having this support and knowledge has shown us how to focus on the positive things and given us insight into how to live our lives on our terms.
What Now?
Since my brain injury, I spent a lot of focusing on the things I can do as opposed to what I can’t.
We’d already set up our own business – Future Toolbox. Future Toolbox was created through a passion to help individuals grow and make a difference to people’s lives. Our mission is to help people become the best version of themselves and live life to the fullest. We do this through motivational speeches, mindset coaching, school workshops, and writing books.
Recently, we created a project called Brain or Shine.
We don’t want anyone to have to go through the struggles that we did for so long. So, now it’s our time to spread our knowledge and support. We started this a few years ago by writing, What the Hell Just Happened?, a book about Mark’s brain injury from both of our perspectives. However, this was not enough. We wanted to make more of a difference. And that is where Brain or Shine was born. Our goal is to create a support mechanism and a community for people affected by any form of brain injury and the hidden disabilities it can leave you with. We have resources for brain injury survivors, their families, friends, work colleagues, and employers.
The struggles of brain injury still affect me on a daily basis, but life is very much on our own terms now. I can rest when I need, but also enjoy all the things that I love doing. I’m a keen runner and have run over 100 half marathons. Travel, trekking, cycling and paddle boarding are also big passions of ours and, more recently, I’ve even taken up learning to sing and play the guitar. I was also honoured to be named the Alex Richardson Achiever of the Year at the Headway Annual Awards in 2022.
It was an honour to win this award. The judges spoke to us on the day, and were extremely complimentary on how we’d both turned adversity into something positive and inspirational. One of the big turning points in the journey was using writing as a form of recovery and, the release of writing What The Hell Just Happened? was cathartic for us both. It was incredibly difficult at first, and there are still parts of the story that make us feel uncomfortable.
As mentioned, running was a passion too and the fifth published book, Half Man, Half Marathon detailed my journey to the 100 Half Marathon Club, but it also shows the links in exercise and positive mental health.
On the other side of the page, we both love reading. Jules loves thrillers, mysteries, and autobiographies, as well as true stories. I’m a fan of personal development and self-help books, especially inspirational stories, which is where our genre being authors came from.
We came across the charity Listening Books and thought that this would be a great idea for brain injury survivors. Brain injuries can affect reading in lots of ways, whether that is struggling to concentrate on the page or simply feeling too tired to pick up a book. All of our books are in paperback or Kindle format, but we get loads of requests for audiobooks, as many struggle to concentrate on words. We realised that audiobooks can help to solve these problems, so it was great to find out that Listening Books offer memberships for people with brain injuries, among many other conditions.
This got us thinking. Firstly, we need to give our readers what they need and will be working on transferring from paper to audio. Secondly, and most importantly, people we meet in the BI community also need to hear more about how Listening Books can help them find or continue their love of literature when reading becomes difficult. It’s only £20 a year for a membership to access over 10,000 books or can be free if you would find this fee a barrier to joining!
On a personal note, Jules and I have been happily married for over 20 years now, and the strength and love in our relationship has got us through the tough times to where we are today. We've come a long way on our journey, and we're very grateful to be where we are now. A simple quote to finish with is, ‘Focus on the things you can do and not the things that you can’t do and, then find a way of doing them’.
We know by supporting you, you are also going to be supporting us.
Join The Brain or Shine Community
We have created a range of resources, programmes, and eBooks for brain injury survivors and their families, friends, carers and work colleagues. Visit our website, follow us on Instagram and join our Facebook group, Brain or Shine, plus sign up to our fortnightly newsletters for advice and news.
Everything is on this link: www.brainorshine.com
Listening Books provides access to over 10,000 audiobooks for all ages and interests for anyone whose illness, disability, mental health condition or learning difficulty affects their ability to read or hold a book. This includes brain injuries and related conditions. If you think we could help you to enjoy books again, click here to find out more.
Author: Mark Kennedy, Founder of Brain or Shine
Editor: Annabel Morgan
