People who suffer brain injuries are often further suffering at the hands of ACC, says the host of a new podcast How To Be Concussed.
In it, Timothy Giles uses his first-hand experience of this poorly understood condition to help others challenged by it.
Timothy Giles, funeral celebrant and host of the 'At A Loss' podcast Photo: GrownUps New Zealand
Giles' first experience of concussion was many years ago when he suffered a king hit, or blind-sided punch, on a late-night street.
“It was interesting because [afterwards] I didn’t actually realise how unwell I was. But you know when a punch has done damage and I knew it had. It took some weeks actually until a friend of mine intervened. I was so unwell I hadn’t realised how unwell I was and a dear mate of mine said he was going to meet me for a catch-up, drove me to an assessment and really it went downhill pretty fast.
“For me, the great irony of concussion is it’s a brain injury and when your brain’s injured it needs to [again become] quite well to realise it’s not well.”
Untreated brain injury can lead to angry outbursts, memory loss and intemperate behaviour, yet the sufferer remains oblivious to what is really going on, Giles says.
“It took four or five years until I could stay awake and function as a human being. By that time I’d lost my business, my house, employment, I was bankrupted. But I was beginning to work my way back into being able to find my way and have some quality of life and foolishly – fitness is a really big part of my cognitive health."
After slowly recovering from symptoms like constant headaches, nausea, vertigo, memory loss and confusion, he got talked into playing football, before a clash of heads knocked him out.
After one concussion, you end up being susceptible to other concussions, and Giles says that accident set his progress back another few years.
Giles says that he wasn't well enough to speak out about the challenges of brain injury after his earlier concussions.
But after another "much more mild" concussion - due to a cycling fall during Auckland's most recent lockdown - Giles took up the radio mic to tell his story.
“This [experience] was much more mild and I think lockdown is actually supportive of concussion recovery if you’re lucky enough to have a stable home, which I did have.
“I spent weeks where I’d just think through 'what are the things that I’m experiencing?' and I’d just jot them down and then I’d record a 20-minute conversation...
“I did one [episode] about the symptoms, I did one about the behaviours that work and don't work. I did one about hope ... It can be very difficult to not fall into the despair.”
For Giles, hope is realistic. He maintains it by actively avoiding things that make his condition worse and adapting to it as much as possible.
Watching TV, for example, has proven to be too stimulating for his brain, and delivers a type of “cognitive hangover” in the days afterwards.
“Maybe the breakthrough I got for hope is more about turning away from the things that lead to despair.
“And the other thing is having the courage to let the few people around me who I really know care and have been through the kind of crap I’ve put them through with my concussive behaviours, to tell them when I’m actually feeling that despair and they help connect me with hope.”
Giles says ACC needs to rethink its way of dealing with brain injury sufferers.
“ACC has some wonderful people within it but it has a number of clinicians who are paid to get people off ACC support. I think there’s a real integrity issue that needs to be addressed.
"Clinicians work really hard and they study huge areas, but I've only met one neuro-psychologist who had real insight into brain injury... and people who told me, neurologists, in particular, some neuro-psychologists, their ignorance was profound. People get told 'oh, you should be better now'. You get told this by clinicians. Unfortunately, the clinicians who I've known over many years who then get brain injuries are like 'oh my god, I had no idea'. I'm thinking 'yeah I know you had no idea mate.' You were telling me to get off ACC and I did and got bankrupted as a result.
"Those sort of damaging things are being done and I'd love to see a formal inquiry into how ACC handles it because I could have been living independently much sooner than I was and many, many people could get back to a supportive whole life much sooner if we had an insight into those symptoms and how long they last."
One ACC clinician, though, made a very touching and useful promise to Giles' daughter when he visited the house - on his own time.
The doctor told Giles' eight-year-old to tell her dad if she thought he was getting tired.
A deal was then made that when his daughter believed he was tired, Giles must then go to his room, pull the curtains, lie on the bed, breath 10 times, then make up his mind whether he was tired or not.
“There was not one single time that I didn’t fall asleep,” he says.
How To Be Concussed mostly consists of Giles' own musings during lockdown but others collaborated after that period, including an old friend he nearly alienated with his concussive behaviour.
The fact that Giles' daughter and former partner - both fiercely private people - wanted to participate in the podcast is testament to how profoundly his injury affected the family, he says.
He hopes the podcast will help support those who love someone with a brain injury, give clinicians a realistic insight into the condition, and also help people find their own ways of living with it.
“When people present to a clinician we normally work really hard to be at our best because it’s a socially demanding situation and no one wants the indignity of tears and breakdown in front of someone else. I don’t think clinicians often get a realistic window into what brain-injured people are living each day, but our whanau do.”
Timothy Giles is a long-term client of the Auckland brain injury support group Headway who produce How To Be Concussed. You can find all podcast episodes here.
Timothy Giles, funeral celebrant and host of the 'At A Loss' podcast Photo: GrownUps New Zealand
