‘It’s hard to tell anyone’: The debilitating, hidden injury affecting thousands of Australians

Unlike some of those with severe TBI, Powell is aware of how much he has lost. But this “insight”, as it’s often referred to, is a mixed blessing. “The person becomes a voyeur of their own decline,” as he puts it. “With insight, the comparison between past and present is relentless. At times, it makes life intolerable.” As part of rebuilding a new identity and direction, Powell has become an ambassador for Headway, a UK-based TBI association, and serves as an adviser on the brain injury unit at Fiona Stanley Hospital in Fremantle. The result is someone who looks much like his former self, but isn’t.

Nonetheless, insight has implications for recovery. “People’s chances of recovery depend on how much self-awareness they have,” says Connectivity’s Melinda Fitzgerald. “If they themselves can tell they aren’t like they used to be, they will be more open to therapies.”

Treatments for TBI have remained largely unchanged for years. (The main advances have been in diagnosis, where the use of CT scans and MRI has been replaced by testing for blood-based biomarkers, including a chemical called GFAP, which is released by damaged brain cells.) Standard rehabilitation includes speech-work, to increase clarity and word-finding abilities, and memory exercises, such as matching symbols in a collection of different shapes.

Group therapy is also popular. After her accident, Rosey Morrow – she of the giggling fits – took part in regular group therapy, where the participants would give an outline of newspaper articles they had read and answer questions about it. One of Morrow’s issues in the early stages was “cognitive communication disorder”, aka losing her train of thought. In response, she would shut her eyes to reduce visual stimuli and sometimes the thought would come back. Now she simply tells people, “I’ve lost my train of thought – what were we saying?”

Such coping mechanisms are common. Alexa Leary learnt to tap her chest, like a drum, whenever she felt the urge to squeeze someone’s breasts. She also underwent hyperbaric oxygen therapy, photobiomodulation (which uses light on damaged tissue to accelerate healing), and transcranial magnetic stimulation (TMS), which delivers magnetic pulses to damaged brain cells via a device worn on the scalp. In her recent book, Sink or Swim, Leary describes it as feeling “like a little woodpecker tapping at my head”.

One of Leary’s biggest issues was anger. She regularly hit her parents, who became covered in bruises. At one point, Russell had to hide in his bedroom while his daughter attempted to kick the door down. The wider family became afraid Leary would actually kill them. “Rage was a huge problem,” says Lauren McNeil, Leary’s behaviour support practitioner. “But rage is just the end of the chain. So we did a lot of functional behaviour assessments to identify what happens right before she escalates, what happens during that, and afterwards. The idea is to see patterns, and understand what the rage is communicating. Is she overloaded, seeking connection, or in pain?” McNeil and Leary also mapped her fatigue, sleep and medications, which were changing every month. “After you do that, you can stop guessing at why her behaviours are like they are.”

Each Monday, the two would do “look-backs”. “We’d sit and go over the weekend, just like a sports replay,” says McNeil. ” ‘What happened? Who did she see?’ She might have had dinner with friends or had a row with her dad.” Simply recalling the events of the weekend helps Leary’s memory, but they also allow for a more detailed analysis via a schema that McNeil calls bugs, butterflies and webs. “The bugs were moments when things had gone sideways,” she explains. “The butterflies were the wins, where Lex had paused and thought before acting, and the webs are the strategies we weave for next time.” One of these strategies was called a “brain break”. “When Lex realises that things are moving too fast for her, instead of waiting until the emotion is expressed in rage, we got her to ask for a ‘brain break’. Sometimes, she’d be on the phone with her dad when she would yell, ‘BRAIN BREAK!’ and hang up, and he would understand what that meant.”

Such strategies are part of what is called “plasticity”, when the brain’s internal circuitry re-routes to develop alternative pathways and new ways of doing things. It’s important to recognise, however, that plasticity is not the same as healing. The brain has no capacity to heal itself: once a piece of it is smashed, it stays smashed. “I worked so hard for a couple of years after my accident,” says Morrow. “I thought I’d get my brain back to where it was before. But after a while, I had to accept that I would never be the same, that this was as good as it gets. That was a very hard moment.”

When Russell Leary walked into the Sunshine Coast hospital to see his daughter immediately after her accident, in 2021, there was a single black crow hovering, like a premonition, over the entrance. He felt a cold shiver: everything augured a catastrophe. But the following months would reframe what was plausible, both medically and spiritually. After the crash, Russell and Belinda employed a quantum healer, called Michela D’Addario, to communicate with Alexa while she was still in a coma. (Quantum healing is a fringe practice that purports to combine meditation and energy work with metaphysical concepts from quantum physics.)

Sitting by Alexa’s bedside for weeks, D’Addario would “meet” her on the quantum field, which often looked like a garden, and tap into her thoughts. One of the many messages that D’Addario relayed back to the family was that, after she recovered, Leary wanted to swim at the Paralympics. Not only that, but she would win three medals. Sure enough, Leary had barely begun to walk again before she started training in the pool. The International Paralympic Committee classified her S9, for swimmers who have severe weakness in one leg. She went on to compete in the 2024 Paris Paralympics, winning two gold medals and a silver. “It was weird,” says Russell, referring to the quantum healing. “But it happened.”

Needless to say, few TBI sufferers have such happy endings. “I don’t think that superhuman stories of recovery are especially useful,” says Bruce Powell, “because they are either incomplete portrayals of the issues or inconceivable for most of us.” The wins seem modest: remembering your bank PIN; tying your shoelaces; recognising your friend’s face in a crowd. Failed marriages are common in the TBI world, so just staying with your partner is a triumph.

In his writing, Powell makes an analogy between living with a TBI and playing a surreal game of golf. “Rehabilitation gives you therapists, carers, doctors and loved ones. But eventually, everyone steps back. It’s just you and the ball. Wherever the shot lands, it’s yours to play. You are in control, no matter how bad your golf might be. All you can do,” he writes, “is keep on swinging.”

Get the best of Good Weekend delivered to your inbox every Saturday morning. Sign up for our newsletter.

Read more from Good Weekend magazine: