Traumatic brain injury (TBI) is a ‘silent epidemic’ affecting more than just the injured person. I came to terms with it when we were called into a separate room at Royal Perth Hospital to be briefed on my step-father’s condition after his fall at work. We entered a pastel-coloured room and the doctor closed the door shut behind us. When I saw the precise positioning of a flowery tissue box in the centre of the room, I knew our lives were about to change forever.
The weeks following the accident were tough. Night-long surgeries where the future of our family limboed in the gifted hands of multiple surgeons, making it hard to sleep. Every time I closed my eyes, I would picture my step-father falling from over five meters and landing on his head. He, on the other hand, slept just fine, an induced coma that we were never sure he would wake up from. When he did, the glazy unresponsive look in his eyes was normal,according to the nurses, considering the long list of medication he had been administered.
How do you go from knowing someone almost your whole life – sharing countless memories under the same roof – to seeking a hint of recognition in a vague, drugged-up reflection where you are left staring inwards?
In my case, you thank the wonders of medicine and count your blessings for living in a country where the health system cares for its own. TBI changed my step-father forever, but I am aware that we are very lucky to have him with us to tell the tale. According to the Australian Institute of Health and Welfare, unintentional falls are the leading cause of injury deaths in Australia. The main cause of hospitalised injuries are also falls. My step-father joined that second statistic almost two years ago. His lifelong climb to recovery has also changed the way I interpret the world around me. The fall has brought our family closer, a tight-knit core where his wellbeing lies at the centre of our sometimes-over-zealous worries.
TBI is, still nowadays, a somewhat grey area inviting scientific breakthroughs. I spoke to Professor of Neurotrauma Melinda Fitzgerald, whose research takes‘an informatic approach to predict outcomes and monitor intervention efficacy following moderate to severe TBI’ (Department of Health). Professor Fitzgerald’s project is one of nine to have been granted funding by the Traumatic Brain Injury Mission, a research program that will see $50 million invested over ten years.
I was lucky to have the opportunity to ask the expert several questions that had been bouncing around our household unanswered. First thing I asked was something that instantly pops up in people’s minds when a close one suffers moderate to severe TBI. Can one ever expect them to go back to who they were before the injury?
‘Unfortunately, I think they don’t tend to go back to who they were’, Professor Fitzgerald says. ‘However, for the first 6 and even 12 months, it might look like the future is bleak, but people can continue to improve. Elements of brain function can definitely continue to improve and go back to a more normal situation as time passes, particularly if accompanied by a strong rehabilitation framework and if the person involved works hard to harden the brain’s elasticity and repair.’
For someone like myself who tried understanding TBI through their phone in a hospital waiting room, information like this can be like a breath of fresh air.
Professor Fitzgerald is also the chair of the expert working group that wrote the implementation plan and the roadmap as to how the funding could best be spent. She explained to me that modern science has a good understanding of what happens in the brain following an injury, but that we don’t yet understand how to best control those disease processes. Like I said, a somewhat grey area.
This shows the importance of initiatives such as the Traumatic Brain Injury Mission. Every awarded grant is a small part of a large body of work. Professor Fitzgerald believes that each grant is a small piece of a puzzle that will change what we know about the jigsaw that is TBI, and how to best treat it. For those relying on life-changing research such as this one, the future is bright.
But how does one go about surviving TBI? If having a relative endure such a life-changing event can be so traumatic, how about experiencing it yourself? I spoke to Dan Chilwell*, whose life changed forever after being involved in a car accident at the tender age of 17 – about 8 years ago. When I asked him to describe his first days after waking up at the hospital, he told me he remembered very little. ‘Apparently I would have a small conversation for a minute or so’, Dan says. ‘Fall asleep; then have the same conversation.’
The long recovery that ensued was marked by several different challenges. Dan was a bright young man, discovering his identity and trying to find his place in the world. But fatigue, lack of memory, and the inability to control certain emotions often led to frustration. Combine this with an inability to communicate effectively and you start grasping how challenging rehabilitation can be. ‘No ambition,’ Dan says. ‘Every day felt like the next without any true memory of the previous.’
After months of trying to adapt to everyday life whilst allowing his brain to heal, Dan reached a decision. ‘I decided to stop feeling like a victim and tried to power through adversity and get on with life.’, Dan says. He got himself a job, which marked a new stage in his life, but also made him realise fatigue and memory would be a big factor for years to come.
Dan then told me that the hardest part of his journey came only after: dealing with the insurance company. ‘They just kept telling me how bad the situation was and how my brain was buggered, whilst providing no rehabilitation at that time.’ It was with a bright smile that Dan told me how that was the moment when he decided to ‘do some rehabilitation of my own’ by moving to Australia. This was, of course, met with heavy resistance from the insurers. Dan’s message to anyone who has sustained TBI is one of hope: ‘Get on with life, don’t listen to anyone who says you can’t.’
When I asked him about long-term effects, 8 years after the fact, he simply described it as a rollercoaster. Nowadays, he rarely gets frustrated, stating that he simply lives day to day. ‘Not by choice’ Dan says, ‘but because that’s how my memory and emotions work nowadays.’
Dan’s story shows how positive a recovery can become on the long run. His decision to leave everything behind and move to the opposite side of the world hints at the possibility of reinventing oneself following TBI. If no one knew him in Australia, who was to say how much he had changed after the accident?
Family members and close ones usually remember every step of the way, especially the early stages at the hospital injured people tend to forget. My last interviewee to help me fight the stigma surrounding brain damage is a wife whose husband sustained severe TBI in an accident at work. I met Maria for a coffee and a chat: I instantly understood how much the ability to speak out on this ongoing struggle meant to her.
I started by asking her how her partner’s TBI had changed her life. ‘It completely flipped my whole life upside down’, Maria says. ‘One day you have this and that; the next day everything changes in a split of a second.’ Maria’s steely resolve meant dropping everything she was doing in life to care for her husband full time. I asked her whether she felt she received adequate support. ‘When these things happen, the last thing you worry about is yourself’, Maria says. ‘Social services offered me support at the hospital, but I was just focused on dealing with my husband’s injuries.’
It was clear to me that the accident had not only changed Maria, but also her whole way of thinking. ‘You have to’, Maria tells me with a determined look on her troubled face. ‘The situation we find ourselves in leads you to learn how to accept things you can’t change, and just get on with it.’
As I listened to Maria’s words, I noticed a resemblance with Dan’s drive to power through adversity. When I asked her to spare some advice to any other family members out there undergoing similar situations, their carpe diem messages aligned. ‘Seize the day’, Maria says. ‘Don’t worry about the next day. Come to terms with what you have today, and accept it. That’s the only way to be positive.’
Dan and Maria’s message of hope and encouragement can prove useful to people dealing with all sorts of challenges in life. Hardship brings people together, much like my family, for instance, who still heals gradually every day. With initiatives like the one road mapped by Professor Fitzgerald, vital information on how to best treat TBI keeps furthering the knowledge of modern science. And take Dan’s situation as an example: had he never been involved in that car accident, he might have never made it to Australia, or become the remarkable man he is today. Human brains are a fascinating jigsaw puzzle, a Freudian iceberg tip we are yet to understand. In the words of the great Einstein, ‘Adversity introduces a man to himself.’
*Name changed for privacy purposes