‘We were lost and forgotten in the wilderness – now we’re empowering others to live their lives after brain injury’

After their own long and painful journey to find appropriate support after brain injury, Mark and Jules Kennedy have now created an online community to help survivors and those around them to access the resources, information and answers they need to help move on with their lives. Here, we speak with the founders of Brain or Shine, who are seeking to bring positivity, confidence and hope back to those who have been affected by the profound impact of hidden disabilities 

For six long years after Mark Kennedy’s brain injury, he and his wife Jules struggled to make sense of their lives. 

After hitting his head in a fall on holiday, Mark sought medical assistance, but was assured his life would return to normal. 

But ‘normal’ became a world away for the couple as they tried to move on with their lives, realising Mark’s erratic behaviour was totally out of character, but not knowing how to find a solution or who to turn to. 

“I felt forgotten. No one was listening and it seemed like no one understood. I just kept waiting for the time when everything would get better – but that never came,” says Mark. 

“For six years we were in the wilderness, wondering how to solve this and how to find a solution. Our lives felt like a cauldron of bubbling mess,” recalls Jules. 

“There was no support and we were left to fend for ourselves. Because Mark was high functioning and had hidden disabilities, no physical symptoms, there was no recognition that anything was really wrong.” 

Happily, Mark was able – at long last – to find support in identifying the symptoms of his brain injury, and to learn how to manage them in ways that work for him. But for six painful years, he and Jules were forced to struggle on their own. 

To help other families avoid the trauma they suffered amidst their years in the ‘wilderness’, Mark and Jules have founded Brain or Shine – an online community delivering resources and support opportunities for people with brain injury and their loved ones, colleagues and friends, who have to confront the many challenges of hidden disabilities. 

The couple, from Northampton, have also written a book, What The Hell Just Happened, a unique read which recounts their story from their individual perspectives, and the huge impact brain injury had on their relationship. 

“If we can help one other person, one other family, from feeling so lost and who are left struggling as much as we were, then that’s all we want. We hope Brain or Shine can help others in ways that sadly just weren’t there for us,” says Jules. 

‘The wilderness’ – the lack of support after brain injury 

After seeking medical support for his head injury – “brain injury wasn’t even something I contemplated, it was a head injury” recalls Mark – he says it was a relief to be discharged from hospital. 

“I was told to take it easy, and imagined everything would sort itself out. Like when you break your wrist and you have exercises to do once the cast comes off – that is the impression you get with brain injury,” he says. 

But very quickly, the hidden disabilities which were to wreak such devastation in his life began to manifest. 

“Mark was very different, but we didn’t put it down to a brain injury. We weren’t led to believe it was anything to worry about really,” says Jules. 

“It was so obvious he had changed. He wasn’t the same calm and collected person, he was wound up like a coil. He would be so easily irritated and would be fixated on things that were irrelevant. His whole personality seemed to be changing.

“But because he was high functioning, he wasn’t dependent and didn’t have any physical symptoms, he was deemed to be fine.”

While, as the months and years passed, he was urged to seek further medical advice - amidst growing challenges in Mark and Jules’ relationship - he still clung to the belief that things would improve. 

“My neurologist said it might take six months for me to recover, then that became a couple of years, but it still seemed that at some point all of this would end. There was never any suggestion this would be forever,” says Mark. 

“I knew I didn’t want to go on anti-depressants, which made me reluctant to go and see the GP. I had seen the impact they’d had on some people we knew, there can be a lot of side effects, so I just thought I needed more time.” 

Frustratingly, Mark’s own efforts to receive the appropriate signposting and to get to the bottom of his symptoms were not successful. 

“I made a list of all of the changes in my behaviour I knew were there. I took it to the neurologist and they said ‘I don’t need to see that, they’re to be expected’. No one took the time to really understand what I was going through and help me find support with that,” recalls Mark. 

“I also went along to a brain injury support group quite a few times, but I was the only person there. While there were some really nice professionals who assured me my symptoms were to be expected, I think if I had been able to speak to others who were in the same position as me, their experience could have really helped me understand what to do.” 

But after one particularly difficult evening, which ended with both Mark, and particularly Jules, very tearful and at the end of their tether, Mark realised he needed to accept that his symptoms were not improving with time.

Thankfully, he was referred onto a brain injury programme at a specialist hospital near his home, which enabled him to learn techniques and strategies in managing the impact of his hidden disabilities. 

“I felt accepted and that, finally, someone was listening to me. I learned to find ways of dealing with what was happening to me. I had really bad fatigue since my fall, but until this point I’d just tried to cope with it,” says Mark.  

“It was also now, six years later, that I learned to refer to my head injury as brain injury.

“The impact of support has been absolutely massive. Seeing where I am now compared to a few years ago is just a world away.”

While Mark was now able to find the support he needed, the fact it took six years and a huge toll on their lives and relationship remains hugely upsetting for the couple. 

 “It is so painful to look back on. I have such grief inside at all of the lost years, all the time it took to find the support that Mark needed. There is so much pain for us both in talking about everything that happened in those years,” says Jules.  

Brain or Shine - creating a support network for others

After their own horrendous experience of feeling isolated and alone after brain injury, Mark and Jules felt passionately about saving others from such a reality. 

“There is such a lack of awareness about brain injury, and everything with hidden disabilities is just that, hidden, nothing is obvious,” says Jules. 

“It’s such a minefield and it’s very hard to understand for people – it’s hard for those who haven’t experienced it, but even those who are living with brain injury might not realise they are, and might not understand why their lives have changed so much.”

Initially, Mark and Jules decided to share their experiences in their book, What The Hell Just Happened, to discuss their journey from their individual perspectives. 

“We didn’t realise how powerful writing it would be. While we didn’t want to bring all of that hurt and pain back, we also knew there would be people who may benefit from our experience,” says Jules, who has trained in Neuro Linguistic Programming (NLP), Cognitive Behavioural Therapy (CBT) Mindfulness and Behavioural Psychology to support Mark’s ongoing recovery. 

“We talk about the same events, but from our own perspectives, which are very different. It shows how much brain injury can devastate a relationship and will hopefully show others that they aren’t alone in feeling like this, and that positive change can come.” 

To supplement this, and to deliver ongoing support to brain injury survivors and their families around the world, Mark and Jules have created Brain or Shine – an online peer support community comprising a host of resources, from webinars and podcasts to a fatigue diary and self-care tracker. 

“Hearing people talk to us is the best thing. We want people to get on track and stay on track – and it also helps us to stay on track ourselves by interacting with others who are in the same position,” says Mark, who won the Headway Alex Richardson Achiever of the Year Award in recognition of his journey. 

“We are there to offer peer support and guidance, but we aren’t saying we have all the answers. Everyone needs to learn their own coping mechanisms, we’re not saying that everything works for everyone. 

“I keep thinking back to how valuable the peer to peer side of things could have been for me, if only there had been others at the support group. But at Brain of Shine, we can bring people together online, whenever they need us.” 

Sian Thomas, a brain injury specialist principal lawyer at Slater and Gordon, has featured in one of Brain or Shine’s webinars. The law firm is a supporter of the organisation. 

“Mark and Jules’ story of feeling lost and alone as they struggled to navigate life after brain injury is heartbreaking – but sadly not uncommon. All too often, we hear similar stories of brain injury survivors receiving life-saving care in hospital and then being discharged to little or no ongoing support,” she says. 

“Brain or Shine is helping to create a community of people who are in the same boat, who share similar experiences and can use them to benefit others. Through creating a forum for peer support, combined with the excellent array of resources they offer to convey information, Mark and Jules have created a much-needed hub for those who may otherwise struggle to find the very bespoke interventions they need. 

“While for Mark and Jules it was probably so much easier to put the painful past behind them, it’s really fantastic they have used it as the reason to create Brain and Shine, and to help others look to the future. I certainly signpost as many of my clients as possible to this brilliant and hugely positive resource, which I have no doubt will help them in many ways.”

Find out more about Slater and Gordon at slatergordon.co.uk