The daily struggle

This set of photographs reveals the hidden struggles and frustrations that shaped men's path to recovery. Here we see both the daily battles and the quiet resilience required to cope with symptoms that may not be visible but are deeply felt. For some, it’s was their first concussion; for others, it was the latest in a series of head injuries, each impacting their families, work, and sense of self.

For many, living with the ongoing impacts of concussion was like navigating a world that’s out of focus. Every day felt like a balancing act. Noise and light became enemies. Memories and thoughts felt scattered. Words could slip away. On top of the physical symptoms, there was an emotional toll: frustration at new limitations, isolation from others who can’t see what you’re dealing with and worry about when—or if—you’ll feel normal again.

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ruling out noise

If we book a restaurant, everybody around me books somewhere in a corner because if I’m sitting in the middle, I find it so hard to be able to concentrate on the people in front of me when there's so much going on around me. I don't go to a lot of things that I know I wouldn't enjoy because they would be too loud. Even if I go to the movies, I have to really want to see the movie and I'll go and work with the earplugs. I've got tinted glasses just to take the glare off things and so I’ll wear them and wear my earplugs. Even just some movies, like it vibrates through your whole being so I find it easier just to watch them at home, if I want to take a break I can.

having to take naps

That’s symbolic of needing to take a nap. That’s the thing you know, is the unknown. If someone breaks their leg, everyone knows that a leg after three months can be right, maybe six months? But when you knock your head, there's just so many knowns and unknowns. And with everyone's experience, there are some similarities, but the variability is so much greater than for a physical injury.

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medication

I’ve had so much medication, pretty much all I take now is what’s in the photo. I still get the headaches, but I just try and put up with it I suppose. Yeah, I don’t like taking medications if I can help it. I've never been a medication person.

struggling with perception

My flatmate said come on let’s have a game of cards and I remember at the time that I couldn't pick up that pack of cards. It's in my hand but it's too small and I can’t see those cards, I can't read what's on it. It looked too small to me. It was just perception. I couldn't read it.

making the little things easier

Going to do the shopping is hard enough as it is. Having to leave the house, the supermarkets are busy and quite a stressful environment for some people with brain injuries and concussions. So, this just makes the process easier, it takes out that first part of the thinking and the planning. I've got a couple of whiteboards; one has good activities and avoid activities.

parenting with a brain injury

Having a child, especially a young child, with a brain injury it's very challenging and very tiring. But I wouldn’t change it. The older she gets, the more she needs. Once your day plays out, we just don't have that energy. When your brains’ not damaged, you can push through being tired but that's not for us anymore. In my case my brain will just shut down. On those crash days I’m just good for nothing for a day or two.

the software doesn't work

They said there's nothing wrong. They say your brain is like a computer, so everything is intact, and your brain is all okay and everything's there. But it's the software doesn't want to work properly.

That’s a circle of shoes all mixed up showing a muddle, but there's a pair of jandals pointing outwards, which is the road out of this. And basically, all I can do is wear jandals. The others are all my running shoes, all mixed up in cycling shoes going nowhere and the ones that are going somewhere is the jandals which is what I can use walking. I mixed them up because it symbolizes the muddledness of the symptoms.

mixed up and muddled

a problem to work through

They said you've got a vestibular problem, and I didn’t even know what that word meant. I looked it up afterwards. That's why the plank’s there, because one of the issues is that when you go on a tramp, you've got to be able to walk across rivers, and that's where the balance problem is. That symbolizes my problem that I've got to kind of work through. I've been tramping for over 20 years.

living with nausea

Initially it was a hell of a thing to do, to get back to work. I was taking ginger every single day. That seems to keep the nausea at bay on most situations. But if it’s a really bad day then I will have to resort to ondansetron. The nausea, the old tinnitus in the ears, the whole thing is just hanging there all the time in the background.

super grateful but it was a fight

It's been a real struggle with ACC but there's two parts to it. One is extreme gratitude, that we have this in New Zealand. ACC though has some not so good parts, and one of them is that they seem to decline something as default, rather than trying to put the effort in to see whether they should be helping you. They put the onus on to you to prove that they should help you. But it’s quite like a cookie cutter thing, rather than something that's bespoke for you.

sleeps important...but it got lonely

I was trying to fight having a sleep in the day because I thought it was a bad thing. I think it was more the OT then reaffirming sleeps important. I don't sleep for more than two hours. But I go to bed. Still do it now. But then it’s interesting there’s times where I was definitely down, mood wise, and some of it was around missing out, or I should be doing something else. It just got very lonely.

short temper, rage in your head

You just have such a short temper when you've had something like a head knock. Your brain just can't cope with things, so just little things can set you off. I married my wife being me, I don't want to become a different person that she didn't realise I was, or now am, because of concussion. And especially with the kids. I don't want it where they get older and they’re like, my dad was a terrible rager. But it's just getting super frustrated with my words.

the coffees' no good

I need things to keep me going. It’s four shots of coffee. I always drink coffee out of a glass at home. I don't know why. I can't do anything in the morning without coffee. Ideally, drinking coffee in the morning probably isn't good for me from a neurological recovery perspective.

seeing stars

With the whole nausea and all the kind of bits and pieces with the brain trying to mend, this is very much the time where you get really, really dizzy and you close your eyes, and you just see stars.

total blur migraines

When you're so tired and fatigued this is definitely one of the things that kind of goes on. Migraines. Everything kind of closes down. Even to this day I still have quite a sore neck every once in a while from the head knock which I believe causes the migraines a lot more as well. I used to get them probably three times a week, I would say. It's definitely nowhere near as much as that now, but, you know, it's just I can't do anything.

cure or chaos?

I had to take them. So I was on Zopiclone, which was a sleeping pill, I was on Valium for anxiety. I was on anti-depressants. The anti-depressants caused me to have to need more Zopiclone while I tried to get over the side-effects of the antidepressants. So they’re there because they helped solve the problem, but they created a lot of problems.

anxiety caused by concussion

This is my brain being custard, because of the anxiety. So that’s just mud. My brain was custard, and I wandered up and down the corridor and I said I’m not coping, I’m not coping. My brain’s going round, my stomach’s going round, I'm not coping. My brain was addled. I hadn’t had a decent night’s sleep for months.

the futures unceratin

That was just a precaution I suppose in those early days, like, straight out of hospital. Everything gets put on hold, you know? The social aspects, the physical sort of side. I got pretty heavy; I was in pretty good shape when it happened but definitely got pretty heavy afterwards because you can’t do a lot physically. You’re a little bit down as well because the future’s uncertain.

It's all in your head - a common diagnosis for repeat concussion sufferers

I have been struggling with a whole pile of health issues. I know I had some assessed, but I've also been asking ACC for help with a couple of things for the last couple of years and they've just sent me for a whole slew of assessments, and this was the latest one. There seems to be a denial about the neurodegenerative kind of possibilities of repeat concussions. I think the thinking is that they don't want to say yes you might have this because then you’ll go ‘ah okay that's what I've got’, and that's how you will behave, and it can make people worse. But, for a logical mind, like me, it’s like well, maybe I do, maybe I don't. But the doctors seem to be very firmly in the no it's all in your head.