I smashed my head and joined the significant minority of people whose concussion symptoms last for months or years — dimming sparks, derailing careers, pushing relationships and mental health into danger zones.
At first I didn’t realise I had a concussion. I’d stood up fast into a thick timber shelf in my pantry, rushing to feed my hungry, shouty cat on an otherwise quiet Sunday night. I saw stars, and gripped the bench to steady myself, breathing through waves of nausea. But I wiped my eyes, took a couple of Panadol and went to bed, not clocking I’d cut my head open.
I worked through Monday with a pounding headache, still not registering that anything might be wrong. It wasn’t until the next day, as I was transcribing an interview I’d just done — I was slurring, and sounded off my face — that I thought: Well, that’s not good.
I know now that it’s not unusual for symptoms of concussion — a kind of mild traumatic brain injury — to develop and worsen over a few days, and that delayed symptom onset may be one of many red flags for prolonged recovery, along with being female. I also know that while the majority of people who sustain a concussion recover without complications within a few weeks, a significant minority — maybe 30 per cent — experience persistent symptoms for months or years, depending on their access to treatment.
The constellation of symptoms may sound mild: headaches, fatigue, slowed thinking and difficulty concentrating, dizziness, nausea, noise and light sensitivity, insomnia, irritability, depression and anxiety are the most common ones. But for many people, especially if they’re not dealt with swiftly, or if they’re dismissed or minimised by medical experts, they can be disabling and devastating — dimming sparks, derailing careers, pushing relationships and mental health into danger zones.
The term “brain fog” doesn’t come close to capturing the feeling of having lost myself.(ABC News: Danielle Bonica)
In Australia, as in other countries, this “miserable minority” who experience persistent symptoms fly under the radar, suffering in silence. Perhaps it’s because there’s a lack of awareness that concussions are mild traumatic brain injuries — that even single blows are serious and should be managed carefully.
It’s possibly also because the conversation about brain injury in this country is focused almost exclusively on sports concussion — how soon footballers return to play — and increasingly the links between contact sports and neurodegenerative disease. Sifting through the statistics, though, you have to wonder why. Just 20 per cent of mild traumatic brain injuries in adults are sports-related; the majority are from falls, motor vehicle and cycling accidents, and violent assaults.
So I was completely out of my depth when I arrived at the Alfred’s emergency department the weekend after my head knock, feeling blank, dizzy and nauseous, failing dismally to follow what a nurse was saying as she walked me in for a CT scan. I was utterly unprepared to challenge my GP when she insisted, after seven weeks and seemingly no improvement in my symptoms, that I just needed to “keep resting”. Take it easy, she said, “concussions can last for six months”.
Six months? I wasn’t sleeping, and couldn’t remember ever being so exhausted. Even on scaled back hours at work I was fighting stubborn headaches and heavy brain fog; some days I was so slow I couldn’t string a sentence together and would frequently forget or fumble words, a gross feeling of pressure building in my temples whenever I thought about anything complex.
The term “brain fog”, I’ve found, doesn’t come close to capturing the feeling of having lost myself, my spark — an experience of my mind as sharp and agile, able to multitask and grasp the fine threads of big ideas and the moving parts of stories… or even just remember my email address, my name.
Until recently concussion has been regarded as a “fairly innocuous condition”, says Professor Jennie Ponsford.(Supplied)
My doctor’s advice was frustrating — especially knowing what I do now — but alarmingly common. Many weeks later I’d land at a concussion clinic at a private hospital in Melbourne, and be surrounded by a capable team of specialists: a rehab physician, neuropsychologist, physiotherapist, occupational therapist, behavioural optometrist and others. With their help and patience I would spend more than a year rebuilding my cognitive capacity and sense of self, learning to overcome pain and panic, clawing my way back to full time work as a journalist, finding a path out of the dark.
What I didn’t fully appreciate back then, though, was just how lucky I was. For too many people struggling with concussion in Australia, finding good care is a torturous, traumatic process that sometimes works out, but too often doesn’t, with frightening consequences.
“Over the years I have seen people who just become a recluse — they end up dropping out of the workforce, they end up at home, fearful of going out because they’re afraid of their symptoms. It can be really devastating,” says Jennie Ponsford, a professor of neuropsychology at Monash University and director of the Monash-Epworth Rehabilitation Research Centre.
“I think the concussion conversation in Australia is mostly about sport at the moment … and that concerns me because there are many other people in the broader community who also need to have their problems addressed, where there aren’t support systems in place or good enough access to treatments.”
Every brain injury is unique
Mild traumatic brain injury, or concussion, is a disturbance in normal brain function caused by the brain suddenly moving within or against the skull, usually after a blow to the head or body. Concussions make up 85 per cent of all traumatic brain injury in Australia and there are an estimated 170,000 every year, though it’s not clear how accurate that figure is because they’re not systematically tracked and many go unreported — not everyone fronts up to GPs or hospitals for diagnosis.
Despite how common they are, the pathophysiology of concussion, exactly what happens to the brain and body, remains surprisingly poorly understood. The initial knock can cause bruising and swelling at the site of impact, while the forces that shake and stretch the brain are thought to cause diffuse damage to neurons, triggering complex cascades of cellular and chemical change and tissue damage over days or weeks. This can disrupt the brain’s delicate circuitry and affect the way we think, sleep, move and feel.
Yet until relatively recently, concussion has been regarded as a “fairly innocuous condition”, Professor Ponsford says — football players got up off the field and kept playing, and it was assumed that “people just got better”. In the past decade or so there’s been an explosion in research, much of it focused on trying to pin down biomarkers for concussion — which usually can’t be seen on standard MRIs and CT scans — and understanding why some people experience symptoms beyond the “typical” recovery period of one to three months.
And the short answer is: it’s complicated. Researchers don’t know if lingering cognitive and emotional symptoms are always the result of physical brain damage or altered connections between neural networks; whether immune cells in the brain, in some people, overreact to the injury, producing a destructive inflammatory response that hinders recovery.
Brain injury is understudied in women but there’s “no excuse” for researchers to keep excluding female subjects, says Dr Sarah Hellewell.(Supplied)
Still, concussion likely causes some degree of dysfunction in the autonomic nervous system (which controls cerebral blood flow, breathing and heart rate) and often patients suffer “exercise intolerance”, or a flare-up in symptoms when their heart rate increases. Many sustain whiplash injury to their neck, the symptoms of which can linger and overlap significantly with those of concussion.
Some experience issues with their visual or vestibular systems, which can cause a range of debilitating symptoms: blurred vision, difficulty reading and concentrating, balance problems, dizziness and motion sensitivity. Psychological factors like depression and anxiety, and how people cope with the stress of concussion, can also exacerbate symptoms and prolong recovery.
“We really don’t know who is more at risk of experiencing persistent symptoms, which is the difficult thing,” says Sarah Hellewell, a senior research fellow in neurotrauma at the Perron Institute and Curtin University. “So if you have a concussion, and you go to your GP or the hospital, they really have no data to be able to say, ‘You’re going to be fine’ … or, ‘We need to keep an eye on you because you might have problems down the track’.”
Several studies have found women are more susceptible to concussion and take longer to recover than men, perhaps because they have smaller, more breakable axons, as well as weaker necks, which can protect against acceleration forces. Hormones like progesterone and estrogen might also influence concussion outcomes for better or worse, while some researchers argue women are just more likely than men to report lingering symptoms.
But brain injury in women remains alarmingly understudied — mostly on the basis that female sex hormones can complicate medical research. “At this point there’s really no excuse,” says Dr Hellewell, who’s currently studying hundreds of adults with concussion to identify risk factors for poor recovery. “It’s not something that we can just overlook and say, ‘We don’t study half of the population because a natural part of their biological process can interfere with the results that we expect to see’. I think we really need to be designing studies with that in mind.”
Various other factors are linked with an increased risk of developing persistent symptoms, including a history of concussion, a history of anxiety and depression, the type of force applied to the brain, and sustaining the injury during adolescence. But there’s “conflicting” evidence for how influential those factors are, Dr Hellewell says — not everyone with depression or migraines will recover poorly; many teenagers will seemingly bounce back just fine.
In other words, every brain injury is unique, and persistent symptoms are probably caused by a complex interplay of physiological and psychological factors.
Exercise matters
For Barry Willer, a professor of psychiatry and research director at the University at Buffalo’s Concussion Management Clinic in New York, a crucial reason why some people don’t recover well is that they’re getting too little exercise. In a study published last year, he and his colleagues found adolescents could speed their recovery from sports concussion and reduce their risk of experiencing persistent symptoms by almost 50 per cent by doing aerobic exercise within 10 days of injury.
Engaging in sub-symptom threshold aerobic exercise — meaning exercise that doesn’t worsen concussion symptoms — can help people recover more quickly, the study found, probably because it regulates the autonomic nervous system (ANS), improves cerebral blood flow and enhances neuroplasticity. This matters, they wrote, because delayed recovery has “substantial” costs in the form of academic difficulties, depression and reduced quality of life.
Importantly, waiting too long to start exercising can cause setbacks, Professor Willer says. “Let’s say someone … gets told, ‘Oh, you’ll get better, just take it easy’ — which is very common particularly for family practitioners to say — and we get them six weeks later? It’s much, much harder to teach the ANS to recover. That’s probably the number one factor causing delayed recovery and prolonged symptoms.”
At the very least, GPs need “basic” training in how to manage concussion, says Professor Barry Willer.(Supplied: Douglas Levere, University at Buffalo)
Of course, exercise is only part of the concussion picture and will only push some patients so far, particularly those with, say, undiagnosed vestibular issues or severe ANS dysfunction. Some people can’t get their heart rate over 90bpm without triggering symptoms, meaning just standing up can be a challenge. As Dr Hellewell puts it: “If you’ve been told to exercise because it will help you but you’re getting dizzy and vomiting halfway through a walk, then exercise is probably not the most helpful thing if you’re not at that stage yet.”
Still, it’s probably been one of the biggest shifts in concussion management. Until relatively recently, the prescription was just to rest in a dark room — “cocoon therapy”, it was called. Now, it’s recommended people rest for a couple of days, before gradually increasing physical and cognitive activity, so long as it doesn’t worsen symptoms (this can be measured with the Buffalo Concussion Treadmill Test).
“In the early days, we would come across these young people who had been told to go home and isolate and they were just psychological wrecks,” Professor Willer says. “They … lost contact with their friends, it was just awful what some advice had done to their lives.”
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Then again, when he first began working in the concussion space in the 1990s, many brain injury experts just didn’t see concussion as a serious problem, he says — people struggling with persistent symptoms were pejoratively badged “the worried well”. “It was like, ‘Let’s get on with life, that’s not an issue — you should see what people with severe brain injury have to live with’. And so we really didn’t have as much respect for it as we should have.”
Disturbingly, well-meaning doctors in Australia are still prescribing concussion patients unqualified rest, potentially prolonging their recovery. In general, the kind of advice and support people receive from GPs is “highly variable”, Professor Ponsford says. Some have experience with concussion and give good guidance for managing symptoms, how to ease back into work or study. Others not so much, “largely because doctors aren’t really taught about mild traumatic brain injury” and may have done their medical training when “just rest” was the gold standard.
Emergency doctors, meanwhile, will often focus purely on ruling out potentially life threatening problems — skull fractures or brain bleeds — and don’t necessarily give advice for managing concussion, or what to do about persistent symptoms. “This is a relatively common phenomenon; many GPs have been confronted with it, but they really don’t have a clear set of guidelines to tell them what to do,” Professor Ponsford says. “We actually don’t have guidelines in this country for the management of mild traumatic brain injury.”
‘If there was an easy way out, I’d take it’
For months after her concussion, Melissa Clark couldn’t fold clothes, read her kids Spot Goes to the Beach or unpack a dishwasher: processing what plates or forks were and where she should put them was beyond her capacity.
She’d been sitting by a playground with friends on New Year’s Day in 2018 when her toddler started running towards the road. Wearing a wide-brim straw hat, she jumped up to chase him, but instead ran head-first into a fat wooden beam. “I didn’t faint or pass out but I was in enormous pain straight away,” says Ms Clark, 42. “I just remember sitting with my friends with my head between my legs.”
Within hours she was slurring her speech and mixing up words. But it wasn’t until she visited a third GP a week later — two others had told her she’d be alright, just get some rest — that she was diagnosed with concussion. What she wishes she’d known back then was that recovery — getting her life back — would be a two-and-a-half-year slog.
“Losing my capacity to work especially was hard, and I put a lot of pressure on myself,” says Melissa Clark.(ABC News: Danielle Bonica)
She’d badly injured her neck, just standing up made her feel dizzy and nauseous and her anxiety was through the roof. “I was really sensitive to noise and movement,” says Ms Clark, an executive director in education policy. “I couldn’t even read a story book to the kids without feeling like I was going to throw up.”
Now she feels “extremely lucky” that her physio knew enough about brain injury to point her to the Epworth Concussion Clinic in Melbourne, where she lives. But at the time, the six-week wait to get in seemed to set her back, and she started rehab — with physios, a neuropsychologist, an occupational therapist and a behavioural optometrist — feeling like she was unravelling.
“It was maybe six months before I improved, before I could get my heart rate up,” she says. “An average day was just sitting at the front of my house, doing my exercises, looking at the trees … walking for a couple of minutes at a time.”
Managing stress and anxiety, Ms Clark learned, was a crucial part of recovery, but some days it felt impossible. She was off work completely for seven months and for a long time had no idea when she’d be able to go back (concussion is frustrating like that; no one can tell you when you’ll be better). Exercising — how she’d normally deal with stress — wasn’t an option.
Melissa Clark suffered from migraines for months after her concussion.(ABC News: Danielle Bonica)
Her husband, who also had a busy job, suddenly became primary carer to her and their two little kids, which put enormous strain on their relationship: what would her injury mean for their family, their financial future? And rehab itself — which generally involves working out where your pain or symptom threshold is and pushing through it — often felt like failing.
“Losing my capacity to work especially was hard, and I put a lot of pressure on myself — I don’t think I ever fully let it go,” she says. “My work, my intelligence, is kind of how I defined myself, so losing both those things had a huge impact. I was also in a lot of pain. I had intense migraines every day for months — I just wasn’t functioning.”
Even with a supportive partner and friends, a secure job, and access to therapy, she says, there were many dark days. “I wouldn’t have said I was suicidal, that you couldn’t have trusted me to be alone with myself. But I remember thinking, if there was an easy way out, I would take it.”
At the clinic
John Olver knows he runs a rare and vital service: the concussion clinic at the Epworth hospital in Melbourne, where I am still a patient. It’s the only multidisciplinary concussion clinic in Victoria, where rehabilitation services, he says, are heavily concentrated in the private system. The clinic opened in 2016 in response to an “increasing need” in the community, a jump in referrals from GPs at a loss for what to do with patients who weren’t recovering from concussion.
Until then, people were probably doing what many (if not most) still do today: finding their way to siloed clinicians — neurologists, dizziness experts, psychologists. And for some, that might be all they need. “Sometimes, just sitting down with a person, talking to them about what persistent post concussion symptoms are, giving them some instructions for exercise, is enough,” says Professor Olver, medical director of rehabilitation at Epworth HealthCare and Victor Smorgon Chair of Rehabilitation at Monash University.
“But I also think there was a lot of concussion that went unnoticed … there wasn’t as much public awareness of the dangers.” Not so long ago it wasn’t unusual, say, for an AFL player to suffer a concussion in the first quarter and be back on the field in the fourth (he still hears of that happening in community sports).
“So I suppose in the last six or seven years there’s been more understanding of what probably needs to happen and more people … seeking help,” he says. “I would imagine in the past people just went to work with thumping headaches and dizziness and struggled on, and then eventually probably got better, or didn’t.”
The majority of concussion patients can make a full recovery, or at least big improvements, says Professor John Olver.(ABC News: Ashleigh Barraclough)
Or didn’t. The clinic currently gets up to 10 referrals a week, mostly from GPs, which Professor Olver says “really overwhelms the system”. An internal analysis of 609 patients found more than half were female — 54 per cent — and a similar proportion were nursing their first concussion.
Perhaps most strikingly, patients referred within three months of injury recovered better than those who arrived later; the slower referrals reported more severe symptoms and lower overall activity levels at discharge. That’s not surprising: numerous studies have found swift diagnosis and treatment can significantly lessen the impact of persistent symptoms.
Still, the majority of patients, Professor Olver is keen to stress, can make a full recovery — or at least big improvements. “That doesn’t mean they don’t go through a hell of a time with the symptoms they’ve got, given they’re affecting all aspects of their life.”
Many people really struggle with the invisibility of their condition, he says — sometimes friends or colleagues don’t believe they’re unwell, or don’t understand why they can’t perform their normal duties at work. “You’ve got nothing to show for it. You are feeling dreadful, but everyone else says, ‘Oh come on, what are you doing’, sort of thing. And so that’s part of the psychological burden as well.”
Over the years the clinic’s team of specialists have learned how to “target therapy” — to focus initially on treating the most disabling of about two dozen common symptoms. It can be a bit like untangling a knotted ball of string.
“One of the beauties of team management in rehabilitation … is that there’s a group of people who are heading in the same direction with a patient’s symptoms, each with their own area of expertise,” he says. “It’s not disjointed, it comes together. And that’s the strength of the program.”
This approach might be effective because persistent concussion symptoms are thought to be linked, sometimes quite strongly, and can become self-sustaining and entrenched over time. So targeting just a couple of the worst ones — headaches and anxiety, for instance — might alleviate or turn off others.
Evidence also suggests persistent symptoms are best treated with individually tailored, multidisciplinary therapy. It makes sense: a vestibular physio probably won’t be trained in speech pathology; a behavioural optometrist can provide vision therapy but not write an occupational therapist’s return-to-work plans. But experts say more rigorous evidence for why such programs are effective is required.
None of that is to suggest rehab is easy, fast or cheap. The state’s Transport Accident Commission funds some of the Epworth’s therapies for patients injured in car or bike accidents, if they accept an applicant’s claim, while some private health funds cover a certain number of sessions, if you have insurance in the first place. Beyond that, patients must pay their own way through treatment. And for many — especially those unable to work because of their symptoms — it’s simply not affordable.
The concussion whisperer
It can be quite shocking to discover that the kind of care you’d expect to be able to access if you sustained a brain injury in Australia doesn’t really exist, at least not for everyone. When Natalie Foley was working as a pharmacist many years ago, she would regularly point people with suspected concussion to local emergency departments or GPs. It was only when her teenage son suffered a concussion in 2017, and she experienced the limitations of those systems for herself, that she realised she’d “basically been sending people off a cliff”.
Ms Foley’s son didn’t recover in the “typical” four weeks after he was discharged from a Sydney ED. Alarmed that his symptoms seemed to be worsening, she bounced between doctors and hospitals across the city, dashing off emails to brain injury units, making dozens of unreturned phone calls. The experts she spoke to along the way were sympathetic, she says, and could tell her he had “post concussion syndrome”, but were unable to offer more than a prescription for pain medication and bed rest.
“I think they understood his concussion as a serious enough injury, but didn’t have any tools or resources to either assess it properly or direct people to appropriate health care,” says Ms Foley, now a neurocognitive rehabilitation therapist and a director of Brain Injury Australia. “I really feel at that point they were doing their best given their knowledge and resources, but they didn’t have a clear referral pathway … there is actually nowhere to send people.”
Ultimately, people struggling with concussion symptoms just “want to feel like themselves again”, says Natalie Foley.(ABC News: Jack Fisher)
So Ms Foley rolled up her sleeves. She immersed herself in the literature on concussion and, after consulting brain injury guidelines and experts overseas, put together her own local team of specialists who could treat her son’s symptoms. Later, she flew to the United States — where there are many well-established (if expensive) concussion clinics — on a mission to understand how and why their programs worked. If she could educate herself, she figured, she might be able to help other people in Australia navigate recovery.
Still today she’s using her expertise to do precisely that, operating as a kind of concussion whisperer, helping people around the country understand the science of their symptoms and how they might be interacting. She listens, she writes recovery plans and points them to local physios, optometrists, neurologists. Some weeks she takes up to 30 phone calls, usually in an unpaid capacity, on her own time.
“I can pretty much predict what people are going to say,” Ms Foley says. “And that’s a tragedy … that people are treated the same way. Ultimately, people just want the same thing: they want to feel like themselves again.”
The same year Ms Foley’s son got his concussion, Brain Injury Australia published a research report on the gaps in treatment and information for people experiencing ongoing symptoms. It revealed a waking nightmare: a health system designed for those who make swift and uneventful recoveries, leaving thousands of others to muddle through on their own. While some patients were connected with specialist services early, it found, others were “treated as outliers or misfits” by clinicians who dismissively attributed their symptoms to “psychological problems”.
Natalie Foley sees many concussion patients who have been told it’s “their fault” they’re not recovering.(ABC News: Jack Fisher)
The study highlighted numerous barriers to recovery, including emergency doctors and GPs with “limited knowledge” of how concussion should be managed, and a dearth of brain injury clinics. Australia’s handful of clinics, it found, were located in major cities — completely inaccessible to people living in regional and rural areas — and many were designed for patients with very severe injuries. The cost of rehab was singled out as another big problem: some participants said they didn’t access treatments they’d been urged to get because they just didn’t have the money to pay for them.
As Ms Foley sees it, not enough has changed in the years since. She’s buoyed that there seems to be growing public awareness of the seriousness of concussion, and that a clinic for young people recently opened at Sydney’s Royal North Shore Hospital. But every day she hears from people struggling with persistent symptoms still facing the same yawning chasms in health systems, the same potential long-term consequences: reduced quality of life, unemployment and poverty, depression and anxiety, an increased risk of suicide, unreached potential.
“I see a lot of people whose parents contact me because they don’t know what else to do. They’ve done everything they’ve been asked by the GP, they’re maybe taking antidepressants, and they’re still trying to pull their child back from the edge of a cliff,” she says. “I see a lot of people who have basically been abandoned and told that it’s their fault they’re not recovering. And when you look at it, they’ve had substantial symptoms that haven’t been managed appropriately, and when they’re managed, they get well.”
Proper treatment, better training
What the thousands of people struggling to recover from concussion in Australia need now, experts say, is more multidisciplinary clinics in the public health system, and clear referral pathways to those services.
For Natalie Foley, anyone who’s had a concussion should ideally be able to visit such a clinic within 48 hours of their injury: for medical assessment, Buffalo Treadmill Testing, reassurance and advice. Then, if they need more support — if they’re not recovering well — the option to return for more precise diagnosis and a fast track into rehab.
Professional athletes have an advantage when it comes to treating concussion. They are generally fit and healthy, and often have easy access to doctors, physios and the best head injury and pain management experts in the country. They’re also usually very motivated to get back in the game, so complications tend to be identified more quickly than they might be in, say, a klutzy white collar worker.
But why should getting good care be dependent on where you live, how much money you have or whether your GP has secret squirrel information about where to refer you?
“We need proper pathways and treatment programs for people with post concussive symptoms … that are publicly accessible, that don’t require people to pay a fortune for,” says Terence O’Brien, Alfred Brain director and chair of medicine at the Central Clinical School at Monash University. “But we also need more research,” he says — studies that shed more light on the condition’s pathophysiology and, crucially, what kinds of treatments are effective. “There really has been very little funding for concussion research, and that’s probably the biggest fundamental problem.”
We need more research on mild traumatic brain injury in Australia, says Professor Terence O’Brien.(Supplied)
At the very least, says Barry Willer, GPs need “basic” training in how to manage concussion. “They have to know that the autonomic nervous system is the root of the problem,” he says. “They understand how the ANS works, that’s basic to their medical education … but very few of them are aware that the ANS gets completely disrupted during a concussion — that’s the starting point. They also need to realise that … it’s very difficult to assist your ANS to regain regulatory control without exercise. That is the only thing we know that works.”
In Melbourne, Jennie Ponsford and her colleagues at Monash University’s Turner Clinics are conducting a randomised controlled trial to evaluate if and why a multidisciplinary concussion treatment program works. They’re hoping it will lay the foundations for more clinics in Australia — and also educate the broader health community that mild traumatic brain injury is a “complex condition” that requires personalised treatment.
“I think doctors and services will be incredibly grateful to know what to do,” she says. “I think that GPs find it really stressful not being able to help their patients. So there needs to be a huge education program — doctors in training need to be educated about how to manage these symptoms.”
Wiser, stronger, tired
Here’s the truth. This past year has tested me like no other challenge I have faced. I have frequently been encouraged to go gently, to get comfortable not feeling as capable or quick as I want to, and to reflect often on the progress I’ve made, no matter how incremental it seems.
I was urged to cultivate a positive outlook, a “growth mindset” — faith that I would, eventually, get better. That discipline, it turns out, can be a powerful tool: people who expect to recover slowly from mild traumatic brain injury often do. And of course there’s the exciting science of neuroplasticity — the brain’s remarkable ability to heal and adapt after injury, to reorganise or “rewire” itself around damage with focused training and time.
But I don’t want to gloss over how hard this process has been. I have not always handled it gracefully. Sometimes I find myself resenting our cultural reflex to see chronic illness or injury as an opportunity for enlightenment or self-improvement, even when it’s shaken or stolen your sense of self. You persevered! You triumphed! You must now be emerging wiser and stronger, transformed? I am wiser and stronger. But I am also tired, and occasionally still bewildered that such a seemingly minor accident — smashing my head in the pantry — could wreak such havoc on my health and my life.
I did several months of vision therapy with a behavioural optometrist as part of concussion rehab.(ABC News: Danielle Bonica)
There have been days where I was so sensitive to noise that I couldn’t bear even simple, quiet music. One afternoon I had a panic attack in my bathtub — wearing industrial ear muffs — where I’d been trying to “mindfulness” my way through the racket of hedge trimmers and leaf blowers in my neighbour’s garden. Not so long ago, dinner at a busy restaurant would wipe me out for a couple of days.
I still sometimes misjudge my limits and get off a work phone call and have to rest until my fuzzy headache fades. My self-esteem has suffered through all of this: for not being able to work for as long or as fast I’d like, or find the energy to heat up a bowl of soup. I have hated needing my husband in ways I never wanted to, and many times have felt like my marriage was exploding along with everything else.
Like many clinicians and researchers I have also been noticing the striking overlap between long COVID and persistent post concussion symptoms, and I really feel for COVID long-haulers struggling with ANS dysfunction, cognitive impairment and fatigue. I wonder whether some of the effort being invested in understanding and treating COVID will improve knowledge and therapies for concussion, and vice versa. Then again, some doctors have predictably been ascribing long COVID patients’ symptoms purely to anxiety — perhaps because they lack specific enough testing, time for empathising or the humility to cope with uncertainty and complexity.
It’s hard to know which parts of rehab have been most crucial to my recovery. There have been a couple of important turning points, though. After I spent a miserable few hours one day feeling like I was on a boat, as if the world was spinning, my physio discovered I had benign paroxysmal positional vertigo, a vestibular disorder which is common in concussion patients. The bad news was I’d spent a long time feeling dizzy, nauseous and anxious. The good: it could be treated. I felt like I was back in my own body.
This past year has tested me like no other challenge I have faced.(ABC News: Danielle Bonica)
I also did several months of vision therapy after my behavioural optometrist found I had difficulty focusing, which was likely contributing to my cognitive fatigue and headaches, slowing me down. Ocular-motor dysfunction is also common after traumatic brain injury — perhaps not so surprising when you consider more than half the brain is involved in visual processing. Now I’m in a new, very precise prescription, and am amazed by the sense of clarity and calm it’s giving me. It’s just as my optometrist predicted: “I think you’re really going to enjoy being able to see.”
And yet, I had those resources. I’ve often burst into tears after talking to people struggling with persistent concussion symptoms these past few weeks, many of whom have been gaslighted and shut down by their doctors or psychologists, ironically told their issues are “all in their head”. Many are hopeful they’ll get well, but aren’t really sure how.
One woman in Victoria told me she’d recently been diagnosed with PTSD — the result, she said, of trying and failing to find good care. She made some progress with a neurologist and chiropractor, but still has problems with short-term memory, fatigue and speech and is having trouble coming off medication for migraines. She had to leave her job a couple of years ago when she couldn’t keep up with its cognitive demands and hates how depressed she feels some days. Maybe if she’d lost a limb instead, she told me, people would understand her disability better — at least she’d still be able to work.
The brain is the most complex thing in the known universe, a wondrous and mysterious organ of billions of neurons that function differently in different people. It’s what makes each of us unique, and why no two concussions are the same. So it’s astonishing that we don’t have precise protocols in Australia for helping people recover from mild traumatic brain injury.
For the most part we’re leaving it up to very unwell patients to figure out what kind of care their neurons might need; if they’re lucky we point them to specialists who can help with some but not all of their symptoms. But why isn’t this problem more widely recognised — why aren’t we taking the most common injury to the most complicated part of us more seriously? As Melissa Clark puts it best: “It’s your brain!” It’s your brain.
