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

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Early one Saturday morning in July, 2021, Gold Coast triathlete Alexa Leary set off on a training ride with a group of elite cyclists in the hills behind Noosa, on Queensland’s Sunshine Coast. The route was demanding; an undulating 90-kilometre ride, including a 2.5-kilometre climb to the summit of a local landmark called Black Mountain. Her father, Russell, would tag along as a support rider. Her fellow cyclists had a reputation for riding fast and even for being a little reckless. But Leary, who was 19, had ridden the route before and was a fierce competitor: two years prior, she had won silver at the Women’s Under 18-19 World Triathlon finals in Switzerland in 2019 and she had her sights set on the Paris Olympics.

Leary kept pace with the group up Black Mountain and down the other side, then on to the top of the next hill, just above Cootharaba. Exhilarated, she texted Russell, who had fallen behind. “I made it with them,” she wrote. He replied: “Great effort. The universe is changing, keep trusting it.”

Leary then began her descent, pushing herself to stay with the group. She was charging downhill at 75 kilometres per hour when, in a split-second miscalculation, she clipped the wheel of the rider in front. She immediately catapulted over the handlebars before landing on the right side of her head, causing her helmet to fly off. She then flipped, slamming the left side of her head onto the bitumen with a cracking sound so loud that a fellow rider later likened it to a tree splitting.

When Russell arrived at the scene, some 30 minutes later, he saw a crowd of people, and two ambulances. He had no idea who was injured. As he approached, one of the paramedics remarked, “They don’t think she’s going to make it.” It wasn’t until he got closer that he saw it was his daughter. “She was unconscious, her eyes were rolled back,” he tells me. “There was blood everywhere, and her knee was ripped to pieces.”

Alexa was rushed to Sunshine Coast University Hospital, where she was put in the ICU. By the time her parents made it to the hospital, the pressure on her brain was already so great that, as Russell remembers it, “her eyes were bulging out of her head.” The doctors told Russell and his wife Belinda that their daughter had suffered what was called a TBI – a traumatic brain injury. It was so severe that if she survived, she would be a vegetable, unable to walk or talk.

Leary was placed in an induced coma and airlifted to Royal Brisbane and Women’s Hospital. In order to relieve the pressure on her brain, part of her skull was removed and placed in a freezer in the basement. (Unrestrained, Leary’s swollen brain bulged 20 millimetres outside her head.) Two weeks later, she emerged from the coma. Three months of rehab lay ahead, during which Leary, with the aid of doctors and therapists, would relearn the rudiments of human functioning, from how to chew, swallow and communicate, to the difference between a knife and fork and how to use them. After 111 days, she walked out of the hospital, against all the odds, alive and breathing.

The after-effects of triathlete Alexa Leary’s traumatic brain injury were both mysterious and terrifying.Paul HarrisHer family was traumatised, but Leary had survived. In November 2021, as a celebration, her parents took her to a cafe in Noosa for her favourite treat, an iced coffee. She took one sip, curled up her nose and told the cafe owner it was “shit”. Leary could be moody and intense, but she had never been rude or abusive. But other, more bizarre behaviours would follow. Soon after the cafe incident, Leary’s grandmother, Shirley, paid a visit. The minute Shirley walked through the door, Leary walked up and grabbed her breasts. She did the same thing with a waitress on a trip to Sydney. “I was grabbing random ladies’ boobs,” she tells me. “I just couldn’t control it.”

Leary’s parents would try to explain that their daughter had a brain injury, but strangers found it hard to reconcile. Leary looked fine. Her physical scars had healed. For all intents and purposes, she was back to her old self. But, as was becoming apparent, her brain was full of broken wiring. The fragile snow-dome of her mind had been shaken violently and beyond repair, with consequences that were both mysterious and terrifying.

Brains in museums often look rubbery and plasticised, but they are in fact, surprisingly squishy, with a consistency that has been likened to soft tofu or custard. The average specimen weighs 1.5 kilograms and is thought to contain about 88 billion neurons, including galaxies of axons and synapses, all variously connected by electrical signals and neurotransmitters. Different parts of it do different things, from the temporal lobes, which are located behind the ears, near the temple, and play a role in hearing and language, to the frontal lobes, which are involved in problem-solving, abstract thinking and how we act upon our emotions and impulses.

Roughly the size of two clenched fists, your brain floats in a sea of cerebrospinal fluid housed in a helmet of bone, up to 10 millimetres thick in places, otherwise known as your skull. If you get hit hard in the head, your brain can bounce around inside your skull, or twist and ricochet, causing the pathways between brain cells to tear and snap and your brain to start bleeding. This is followed by a secondary trauma, known as a neurotoxic cascade, when the injured neurons secrete free radicals and glutamate that further kill healthy cells.

“No traumatic brain injury is the same,” says Melinda Fitzgerald, deputy vice-chancellor (research) at Curtin University and CEO of Connectivity Traumatic Brain Injury Australia, a not-for-profit that advocates for people with TBIs and supports research. “The damage depends on where you’re hit and how hard, and everyone responds differently.”

TBIs are on the rise. A 2022 report from the Lancet Neurology Commission estimated that 55 million people worldwide live with a TBI and described it as a major global health problem. According to the Australian Institute of Health and Welfare, 450,000 Australians have brain injury: TBIs account for 142,000 hospitalisations annually, placing significant strain on emergency departments. Most are caused by falls, car crashes, sports injuries and assaults. The accidents that occasion TBIs tend to be extraordinarily violent: one man I spoke to for this story was driving at night on a lonely stretch of highway when he hit a bull. The animal came straight through the windscreen, colliding with his face. “My doctor told me that I didn’t so much as break the bones in my face as totally shatter everything.”

Fortunately, victims rarely, if ever, remember what happened. Invariably, large chunks of their memory are erased. In Leary’s case, five years of her life prior to her accident were wiped clean. When she woke up, she didn’t recognise her mother – “I thought she was Dad’s best friend” – or her longtime boyfriend. “I had to look at photos on my phone to fill in the blanks, but I couldn’t date him any more because I felt I didn’t know who he was.” Leary has a love-heart tattoo on her wrist and a lightning bolt on her ankle, but she couldn’t remember how they got there. “My parents told me I got them with my best friend.”

TBIs commonly affect the brain’s processing speed. “When I woke up in the ICU, my husband, Eric, was talking to me, saying, ‘It’s Eric, your husband,’ over and over,” says Eloise Zoppos, a 39-year-old researcher in Melbourne, who was struck by a car during her morning walk in 2024. “But he seemed to be talking incredibly fast and I couldn’t understand why. In fact, as I found out later, he was talking very slowly, but my processing speed had been so damaged.”

Zoppos, who has soft brown eyes and dark, straight, shoulder-length hair, underwent several marathon surgeries and was in a coma for two weeks. “Eric was told that every minute I was alive was a win.” Today, her main challenge is cognitive fatigue. “It’s not the same as simply being tired,” she tells me. “Because of my injury, my brain has to work harder to compensate for deficits. This means I need an extremely high level of sleep and rest every day to even be able to do simple tasks and activities. Without adequate sleep, I can have trouble concentrating, mix up my words, forget words, slump, feel physically weak, forget to eat and drink, and drop things. I can have seizures. I’m even more sensitive to bright lights and loud sounds.”

She can no longer work or socialise as much as she used to. “And if I do, it takes meticulous planning so that the days immediately before and after are extremely quiet to allow for more sleep.” She doesn’t drive long distances or at night, watch much TV (it’s too stimulating), or read to or play with her two young children. “My cognitive fatigue is so debilitating that it feels like my family’s entire life revolves around managing it, and to me, it can feel like it casts a fog over almost every aspect of our lives.” And yet no one, save for her close friends and family, knows what she is going through because, as she puts it, “a TBI is invisible”.

Indeed, while TBIs cause a bizarre range of symptoms – from volcanic rage to giggling fits – the injury itself remains hidden. This can have its advantages, says Zoppos. “It means that I can decide how much of my injury I want to share with others.” Some people with TBIs carry cards in their wallet explaining their disability to strangers, and asking that they speak slowly and remain patient. Others prefer to disclose nothing: “It’s hard to tell anyone that you’ve had brain injury because you have to expect that you’ll never have a job again,” says Ian Lacy, who was working as a strategy consultant with Citibank when he was involved in a life-altering car crash in Queensland in 2005. “I was employed by Fortune 500 companies to tell them where to take their business. But would you like someone with a brain injury giving you advice about what to do with your business?”

On the other hand, not sharing your condition makes it hard for strangers to understand or empathise. This becomes especially problematic when the TBI has caused behavioural changes. According to studies from the UK, between 50 and 70 per cent of people with a TBI experience personality changes. Some of these can seem relatively benign. “Before my accident, I was a serious person,” says Rosey Morrow, a former journalist who was hit by a car in Sydney in 2016. “Now sometimes I’ll get the giggles and I can’t stop. I’ll laugh at stuff other people don’t find funny at all, but I just find it hilarious.”

But most people with TBIs, and their carers, report that the personality changes are negative. People can become more self-centred, narcissistic, colder to loved ones or less affectionate. Disinhibition is common, especially with people who damage their prefrontal cortex, the region sitting directly behind your forehead, which governs, among other things, impulse control. When Alexa Leary’s skull hit the tarmac at 75 kilometres per hour, one of the things it obliterated was her social filter. She would tell people in the street that they were ugly. If she didn’t like their outfits, she would tell them they “should go home and change”. If she didn’t like a meal, she would throw it back at the staff. If her parents were present, they would try to explain, to make excuses and smooth things over. If they weren’t, their daughter was on her own.

“After a while, I had to accept that I would never be the same,” says Rosey Morrow. “That was a very hard moment.”Paul HarrisAt the same time, her social world steadily shrunk. “If my friends said one word to me [that she found annoying], I’d say, ‘You’re a c---!’ ” says Leary. “I lost a lot of friends that way.” Those close to a person with a TBI – including family members – can find it hard to accept that the person they knew before the accident no longer exists. After a time, even Leary’s best friend – the girl with whom she’d got her wrist and ankle tattoos – stopped inviting her out. “I would see her on social media saying, ‘Hanging out with friends’, and it broke me,” says Leary. “I’d unfollow her, but then refollow her and get hurt all over again.”

Such social isolation is both a by-product and a cause of TBIs. “When people get isolated, they’re more prone to develop drug and alcohol problems,” says Adam Schickerling, acting CEO of the brain injury organisation, Synapse. “And when they develop drug and alcohol problems, they’re more prone to violence, which is one of the main causes of TBIs.”

It’s no accident that a large number of prisoners are thought to have a brain injury – research in the US suggests it’s somewhere between 40 to 60 per cent. But inmates are unlikely to get a formal diagnosis, let alone treatment. “Most people go, ‘These people need a psychiatrist,’ but actually, their brains are broken.” Women subject to domestic violence are especially vulnerable. If a woman has been abused for an extended period and never been to hospital, “her rehab prospects are long gone,” says Schickerling. “That window has closed, and often she doesn’t even know.”

It’s tempting to see your brain as a central command, a kind of flight deck for our executive functions. But the brain is also the seat of our identity. Somewhere in that ball of gluggy mush is a matrix of memories, beliefs, inclinations and values, all mediated, in ways we are barely aware of, by raw genetics and the passage of time. A study published in the journal Social Cognitive and Affective Neuroscience in 2021 suggests that much of our identity, that ineffable sense of self, may be located in the ventral medial prefrontal cortex, a small region at the very bottom of the frontal lobe, behind our eyes.

Some people with damage in and around this area report no longer fully recognising themselves. “Memories of my prior self feel complete but inaccessible,” writes Bruce Powell, a former doctor who sustained a TBI in 2018 and now blogs extensively about the condition. “I know who I was, but I do not feel like him any more.” This is not “a change in personality”, he adds, “but the traumatic termination of one life, reincarnated as another”.

Tall and beefy, with thick, snowy-grey hair, Powell, who is 59, lives in Perth with his wife, Anita. He was taking part in a bicycle race on the Great Ocean Road (bicycles feature prominently in TBIs) when he collided head-first, at 65 kilometres per hour, with a metal road sign. “I hit the pole so hard that it bent in half,” he tells me.

Before his accident, he was Western Australia’s director of organ and tissue donation, a highly experienced anaesthetist and head of department in the intensive-care unit in Rockingham hospital, south of Perth. All that was taken from him in a split second: his injury meant he could no longer practise medicine. It was like the loss of a loved one and has involved a similar mourning process. He cites “acceptance” – the last of the five stages of grief, according to Swiss-born psychiatrist Elisabeth Kübler-Ross – as being particularly important. “We don’t get to choose when that acceptance comes,” he says, “nor any of the other stages.”

Former anaesthetist Bruce Powell can no longer practise medicine – and feels like a different person.Paul HarrisAdvertisementUnlike 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.)

Alexa with her parents Russell and Belinda Leary in 2023.Dan PeledSitting 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.”