21 September 2016 • by Niven Avia
I’m a dead keen mountainbiker and I’ve spent countless hours over the last 25 years riding everything I can find on the Port Hills. Up, down, over, around - you name it, if it’s on the Port Hills I’ve ridden it.
I’ve ridden in rides, races, and events all over the South Island. Yes, I fall off from time to time, but going hard is what it’s all about. A few scrapes and bruises are a small price to pay for the pure enjoyment of it all. I love it. It’s my thing, my happy place. It’s where I find my zen.
1 MONTH BEFORE
“You’re a burglar Niv”, Barry says to me. I‘ve just come 3rd in the Mt Pleasant Enduro. This is my first go at full-on downhill racing and I’m still buzzing from the excitement. So when Barry calls me a burglar, I just grin and go up to pose for a photo on the podium.
I ZIGGED WHEN I SHOULD'VE ZAGGED
3 HOURS BEFORE
I finish work a couple of hours early and jump on my mountainbike. Christchurch Adventure Park is officially opening in a couple of days: I have a season pass which gives me special preferential entry to scope it out before the hordes arrive. I’m on the chairlift to the mountainbiking playground and grinning something crazy. After a few runs I’m getting the feel of it and I’m loving it. My last run of the day is a technical monster and a beauty. But, somewhere down this track, I zigged…. KNOCK ….when I should’ve zagged.
I'm not 100% sure exactly what that means - I may have gone too slow, too fast, too hard out, maybe I scraped my handlebars on a branch, or maybe I just slipped.
I fell off my mountainbike - ruptured elbow ligament, torn wrist cartilage, dislocated shoulder. I hit my head really, really hard - intraventricular haemorrhage, subarachnoid haemorrhage, diffuse axonal injury.
"Head injuries and concussion are not unusual in the world of cycling. Even the most careful cyclist or the most protected mountain biker can suffer this condition if the blow to the head they receive, through accidents or crashes, is hard enough."
Bikeradar.com, 21 Sept 2016
About two months after my crash, 20km2 of the Port Hills burns down, including the Christchurch Adventure Park.
My wife did not start the fire. But I’m sure I saw her laughing about it.
“You’ve got a concussion.” The woman’s voice disappears into the mist. It drifts back again: “You’ve got a concussion, like a rugby player”.
Who is she?
Is she a nurse?
And then there’s nothing at all until….
I stare at the package in my hands. I try to figure out what it is and what to do with it. It’s gift wrapped - in Christmas paper. Is it Christmas? I don’t recognise it so I guess it must be for me. It’s in my hands - how did it get there? I open it. “They’re nose-hair clippers Dad. Merry Christmas.” laughs my daughter. She thinks it’s hilarious and slaps her knee. Merry Christmas? OK, it must be Christmas. Nose-hair clippers. Raucous laughter. “Yes, very funny” I reply. More laughter. The bewildered look on my face seems to be appropriate. I join in with the laughter.
This window I’m looking through reminds me of One Flew Over The Cuckoo’s Nest - the Jack Nicholson movie about crazies in a loony bin. I think I’m in some sort of institution - I hope it’s not a loony bin. Just where am I? Have I looked out this window before? Was it years ago? Yesterday? Was it last night’s dream?
I'm in a strange bed.
It's not a stranger's bed, just a strange bed. This damn bed is too short and my legs are crammed up against the end. The sheets are stiff and uncomfortable. I kick out the sheets but then I hit my feet against the bed rails. Why are there bed rails? My bed at home has a tail board. Why am I in a strange bed?
I’m in a dormitory. Why am I in bed in a dormitory? There are other beds in here. There are other people in the other beds.
Who are these people and what are they doing in my bedroom?
Now I’m in a wheelchair. I’m being pushed outside across a parking lot. When we get to the ramp there’s a lip that my wife can’t push the chair over.
My wife! Where did she come from? How long has she been here?
I try to stand but it's a struggle. I can't balance. Why can't I balance? And my legs won't push me up into a standing position. Why are my legs so weak? My wife tells me to just sit and pushes me down, but again she struggles at the lip. I finally manage to stand. I’m wobbly but I don’t fall over. This is the hospital carpark and we make our way out for a snack.
Wait…… why am I in a wheelchair? Why can’t I stand up? Why am I at the hospital?
Hang on…… I don’t think I’m visiting - I think I’m the one in hospital?
It’s not completely empty now - I have a few flashes of standing in the hospital. Just standing. Sometimes I’m in a corridor, sometimes I’m facing a wall. But that doesn’t mean I’m reading the noticeboard. It just means I’m standing, facing a wall, and there just happens to be a noticeboard in front of me.
“I don’t know what day it is”, I say.
“It’s the Christmas holidays, how am I supposed to know what day it is? All the days are the same in hospital”, I continue to rationalise. “I bet lots of people don’t know what day it is”.
I’m frustrated and I can feel the agitation building.
“No, I don’t know what day it is! It’s the holidays, no-one keeps track of what day it is during the holidays.”
“Sorry”, she says “but it’s Monday today”. Who is she? Is she a nurse? Or maybe a doctor of some sort?
“It’s written on the whiteboard over there, and we told you that two hours ago”, she says.
“Is it, is it really? Did you really tell me? Did I know that? How long has that whiteboard been there?”
I might not know what day it is, but I know the look I’m getting – Pity.
I knew I needed to know, and I tried to remember.
I repeated the day to myself all morning - Tuesday. Tuesday, Tuesday, Tuesday, Tuesday. But I couldn’t remember it. I tried over and over, but it wouldn’t come. I could not pull the name of the day out of my mind. How would I know? It’s the holidays and it’s normal to forget the day during the holidays. In the end I tried a guess, but no joy. Oh yes, there’s that stupid whiteboard over there.
There's more flashes of things happening now. Nothing makes sense though.
There's people around, sometimes they talk to me and sometimes they are just floating around in and out of the fog. Sometimes they come at me with a barrage of questions. Sometimes I know the answer.
My name is Niven I was born on 22nd July
Head knock? I’ve had a head knock?
No, this was not my first head knock.
Yes, I have hit my head before.
1977 - playing bullrush and ran into a fence - KNOCK
1988 - fell out of a tree - KNOCK
1990 - diving into a river - KNOCK
1991 - hit the kerb on a motorbike - KNOCK
1993 - missed a corner on a motorbike - KNOCK
1998 - fell off a bicycle onto footpath - KNOCK
2010 - missed a jump while mountainbiking - KNOCK
2014 - slipped on wet rock while mountainbiking - KNOCK
So, I’m in hospital because I fell off my mountain bike and smashed my head.
And yes, I’ve had more than one head knock.
Niven? Niven who?
3 MONTHS IN
I ask the neurologist when I can ride my bike again. “Honestly, if I were you I wouldn’t ride again” he says. “You’re making a great recovery but brain injuries are cumulative and you’ve had several knocks to the head already. If you have another one it won’t be good. If you fall off your bike and hit your head again it will be severe.”
He takes a breath and continues: “Put it this way, you have a choice to make: riding your bike or recognising your children’s faces.”
3½ MONTHS IN
I run around the block today - 1.3km
I have to concentrate hard to not run into the lamp posts or into the gutter. I feel like I’m crab-running, but I make it all the way around the block. It’s bloody hard work but I do it. Less than 1 mile but I'm pleased. I’ve decided I need to do some sort of exercise and if I can’t ride my bike, surely I can run around the block.
I used to really enjoy running as a kid so maybe I can learn to love it now. I used to be a good rugby player, maybe I should try rugby again.
"Playing rugby is more than 500 times riskier than cycling, according to new research, which also found that the chance of suffering an injury while participating in winter sports is more than 100 times greater than when riding a bike."
Journal of Transport & Health, vol 6, Sept 2017
4 MONTHS IN
“You need to consider exiting the business”.
The sentence comes as a shock to me. It wasn’t a surprise but it was a hell of a shock.
I’ve been going to work for several hours a day. Mostly to try to prove that I can still perform and should keep my job.
Turns out I can’t perform.
I exit the business. I get by with a little help from my lawyer. The worst bit is that I understand exactly what the GM is talking about. He was right, but damned if I was going to agree. If I was in his position, I would have fired me too.
5 MONTHS IN
I still have this flash of a nurse saying “you’ve got concussion, like a rugby player”.
I don’t want concussion. Can I give it back? Can I just go up to the Port Hills and return it?
I don’t think it belongs to me. I’ve looked after it for a while but now it’s time to drop it off to lost property.
Where is lost property?
I’ve got something to drop off and something to pick up. I’ll swap you this concussion for Christmas, the family camping holiday, my libido, my ability to walk in straight lines, the sound of my daughter laughing on her birthday.
I don’t remember Christmas, or New Year’s, or the whole of last summer. I can’t even remember last week.
I wonder if those memories are in lost property too.
6½ MONTHS IN
Living with a TBI (traumatic brain injury) is like trying to do a jigsaw but with a couple of hundred pieces missing, and most of the pieces are blank and there’s no picture of the finished puzzle. It’s like trying to do a join-the-dots with half the dots missing and only half of the ones there are numbered.
This is my life. Confused. Bewildered. Overwhelmed.
I'm told I need to be patient and my recovery will take time. But it's not fun anymore. Actually, it was never fun, and sometimes it's all I can do to hold on by the tips of my fingers.
There are times when it's so black that there's been nothing but despair. Just the black abyss. Those times are bloody tough. During those times I struggle to remember why I’m even trying to hold on. The only light has been the ladies in my life. They are my sunshine. Wife, daughter 1, daughter 2. They have anchored me to sanity and have been my lifeline.
They have saved my life.
“Are you kidding?” my wife asks in an incredulous tone. It’s an accusation not a question. I can see the anger in her eyes. But I wasn't kidding. I had just suggested a new cycle helmet for my birthday. I'd thought that surely I could ride my bike again.
She said I could get a helmet but she wouldn't hang around to deal with the carnage. And it started to make sense. The phone call from the hospital, the brain injury, the “he might not make it”, then the “he won't die but he might be paralysed” and the “he hasn't broken his neck, but he's been unresponsive for so long we don't know in what condition we'll return him to you”, the tears, and the fact that if I hit my head again I'll be dumber than a very stupid bag of rocks.
It was a short conversation but it was also long conversation. Some home truths about my recklessness (I wouldn't use that word, I'd say adventurousness) and it became clear to me. The neurosurgeon said another head knock could result in me not recognising my daughters’ faces. This wee chat helped to crystallize the fact that my life has changed - permanently and irrevocably.
Adventures must be evaluated first, modified as appropriate, or cancelled altogether. That doesn't mean No Fun, but it does mean that Fun looks different now. Not better, not worse, just different. And I'm OK with that. I'm OK because right now I've got three good things going for me: I can breathe, I can wiggle my fingers and toes, and I can outsmart a cauliflower.
Anything more than that is a bonus.
7 MONTHS IN
I'm using a drop saw to cut kindling.
I’ve had a traumatic brain injury, can’t concentrate, my hand-eye coordination is crap, and I’m using a drop saw. A drop saw! Is that a good idea?
Obviously not a good idea.
In my brain damaged world I actually think there’s nothing wrong with it.
The safety guard around the blade has jammed and after some man-handling and percussive maintenance it's no longer jammed but it is cracked and it no longer functions. It's now just in the way and is more of a nuisance than anything. The broken guard makes things more tricky. In my brain addled way I convince myself that it'd be safer without it. Obviously, the clever thing to do is to remove it.
So now I'm drilling out the rivet so I can remove the safety guard.
Jesus! What other craziness am I doing? Am I putting anyone else at risk? Am I being safe (obviously not this time) or am I a walking accident about to go off?
Maybe I should just watch tv or go have a sleep.
8 MONTHS IN
I'm watching my daughters play netball.
It's chilly so I'm wrapped up against the cold - this is difficult because not only am I horribly uncoordinated right now, but my arm is in a cast after surgery to repair my ruptured elbow ligament. I feel like my clothes are on backwards or inside-out or something.
I'm disoriented this morning. Walking across the courts to watch the game was tough. Hundreds of kids, running, laughing, shouting, and jumping. Balls flying around, bouncing towards me. The noise! One daughter running ahead and the other lagging behind. I'm trying to make sure I don't get hit by a ball, trying not to lose a daughter, trying not to get lost myself, and oops I've just walked into the middle of a passing drill - lucky it’s only practice and not a game.
So, I made it here and it is a lovely morning - chilly, but sunny and calm. And some guy, I'm sure he's someone's father - I can't picture his daughter, I hope she plays in our team - and I've no idea what his name is. He looks vaguely familiar but then again so does everyone here. He appears to know me. He's asking about my arm and when I say it was from the same accident he nods knowingly. He asks if my arm is the last of it and I say yes it is. He nods and says it's been a long time and I must be pleased that it’s finally all done. I nod and say yep, just a bit of recovery to go and I'll be right. Could it actually be any farther from the truth? I’m confused, bewildered, and overwhelmed by everything. My balance and coordination are terrible. Things are most definitely not alright.
It's just so much easier to smile, nod and agree.
Or should I be completely truthful? Should I say my arm will take 3 months to recover, but my head will be many years - if ever. Should I explain just how hard it was to get here this morning. How difficult it was to tape a bag over my arm and shower without falling over. How difficult it was to get dressed - my head, my balance, my arm and how much it hurts. Trying to figure out what I’m doing. And during all the chaos, did I take my meds? I can get through the pain, but did I take my antidepressants? And what am I doing now? And that's just a half hour snapshot of this morning. So, I smile and say yep, it's all done now. Just a bit of recovery and rehab and then I'm all good again - Yeah Right. Smile and nod.
I’m getting better at focusing my mind, but I feel like my brain is partially blind.
Before the accident I had 20/20 brain power. After the accident my brain was pretty much blind. I could make out patches of light and dark but no shapes, colours or any sort of definition. Now I can start to focus - not only light and dark, but colour too. There’s big shapes and small shapes and sometimes I can almost make out what the shape may be, but I can’t quite get that fine tune on the focus. Things are still smudged and the clarity is not good. Some days if I concentrate really hard I can actually see enough not to fall over but the effort is exhausting and I can’t sustain it for long. Some days there’s just no amount of trying that will result in me seeing more than a blur. But I know I can practice and get better.
And that’s how my brain works right now.
I think I can get better, I think I can, I think I can, I think I can……… I can think. No wait, that’s not right. Hang on, I think I can think… OK, I think I can think, therefore I can think.
Forgive me Father, for I have sinned.
I threw out a full slab of beer today. It was a full 24 pack and it was unopened. The Best Before date was 18 June. I must’ve bought it before Christmas and it sat in the beer-fridge all the way into July.
At 4 weeks, I asked the doctor how long till I could drink again. When he said no booze for 3 months my eyes just about popped out of my head. The doctor looked me up and down, rubbed his chin, and shook his head. “No”, he said. I breathed again. “You'd better stay off it for 6 months”. I just stood there dumbfounded. Trying to comprehend what he meant. “Yes, 6 months. No alcohol for 6 months.”
Tick, tick, tick, tick. Ting! The penny dropped. No drinking. None. I'm brain damaged and lucky I'm not a dribbling idiot, so no drinking.
I've spent so much time feeling either drunk or hungover that I've not missed it at all. Every morning when I wake I feel either really drunk or badly hungover. The irony is that I'll probably wake up tomorrow morning feeling like shit with a headache and the shakes anyway. If I'm going to wake up with a “hangover” without drinking, how will I be able to cope with a real hangover? My whole world feels like I've been drinking for days on end right now. What will actual drinking do to me? Am I scared? No, I'm being sensible.
That's me. The new me – Sensible-Niven.
The difference between brain injury and physical injury is that, for the most part, brain injuries are invisible and often people consider you to be OK, because you look OK. If you are a little slow or confused, people may think you’re just hungover or drunk, you’re in a bad mood, you don’t like them, you’re uncivilized and rude, or that you’re just not the sharpest tool in the shed.
When I get an odd look I assume, rightly or wrongly, that my brain injury has led me to behave in a peculiar way. I tend to withdraw whenever that happens. There are times, because of my TBI, when I imagine odd looks and so I withdraw. I reckon my constant withdrawing from interactions is weirder than my actual behaviour is. Unfortunately, by this stage I’m too far down the paranoia rabbit hole and my social graces go out the window.
And then my world crumbles.
On the occasions that I explain the injury, because I look OK, people do not comprehend that I am not OK. And that’s the basis of the misunderstandings.
I tell people that “I can outsmart a cauliflower”, and that gets a smile but no true understanding of how hard it is for me to keep up. If I had my leg in a cast I would automatically get sympathy and no-one would ask, or expect, me to be able to run and jump. People would make allowances for me. Even when the cast is removed, I’d still get some allowance due to my limp. Brain injury is invisible so there is no allowance. Nothing. And no comprehension. Just misunderstanding and misinterpretation, followed by a look - sometimes of sympathy, sometimes of pity, mostly of incomprehension and disbelief.
It strikes me that I need to change my perspective.
If I hit my head again I may become so stupid as to be mentally challenged by a cauliflower. Of course, if I hit my head again that would just prove how stupid I am. I need to change the way I look at things. Risks are real. I’m not magic and I don’t have any superpowers. I can be injured and I may not recover. I could die or worse.
I’m a fun guy. I like fun and adventure, but adventure depends on your perspective. Adventurous, careless, reckless, dangerous. All these have an element of risk. Regardless of how you label it, my Adventure carries a degree of risk that I’ve now come to realise, over the last few months, is just too high.
I’m not Bruce Wayne, I’m not Indiana Jones, and I’m not bulletproof. I’m just me. And my perspective needs to change.
After 47 years of behaving in a ‘Niven’ way, I realise that it’s just too risky. How many times - after turning up with a sprained wrist, or stitches in my face, or with giant grazes and bruises - have I said, with a cheeky grin, “If you don’t fall off every now and then, you’re not pushing hard enough”? It’s been my philosophy. If you’re riding safe and completely within your limits you won’t ever fall off. And you won’t get that thrill. The thrill of looking at your speedo and seeing 91kmh. The thrill of riding to the edge and making it back again. The thrill of coming 3rd in a downhill race. The thrill of being slightly out of control and yet under control at the same time.
If you don’t lose control every now and then, you’re playing it too safe. That’s been my mantra. It’s me, it’s in my make-up and it’s how I tick. It’s why I’ve crashed motorbikes, mountainbikes, skis, snowboards, cars. It’s why I’ve injured myself without motor vehicles, without wheels, and even just on my own two feet.
So, if it’s in my DNA, then it’s just a matter of time. I don’t need a mountainbike because I’ll find another way to Adventure myself out of this world and in to the next. I have been like this for the last 47 years. So now it’s time for this old dog to change his spots. I’ve got to do it. It’s not just important, it’s bloody critical.
It is a matter of life and death.
Right then. I need a new perspective. I like to have fun, but fun needs to be fun. Not risky. It needs to be safe. For the last 47 years I’ve been looking through the wrong lenses. They’ve been mis-calibrated. Time for something new.
I need to zag rather than zig.
I’m doing something in the garage with the radio on when I notice the radio has gone off station.
I can hear the beat and the bass but the melody and lyrics are just static noise. I’m getting distracted now and I try to refocus on whatever it is I’m doing. The static comes and goes as I pace out my frustration. By the back door the radio is just white static. As I wander over to the main door the beat comes in, then the bass. Here’s the melody, and now it’s just white static. When I’m outside it’s back to music with a little bit of fuzz.
It occurs to me that listening to the radio right now is analogous to the way I perceive things with my brain injury. Sometimes there’s just white noise - nothing gets through. I know there’s something exciting going on but it’s beyond me; I’ll just smile and nod. Sometimes it clears a bit and there’s a beat and bass - I’m more lucid with what’s happening but I really need to concentrate to understand and I struggle to join in. Sometimes I can hear music over the static - I’m even clearer and can even participate but it’s still a struggle and it’s one thing at a time. Don’t ask me about anything else or I’ll lose track of whatever it is that’s currently occurring. If only I had some control over the tuning of things right now, and how I wish life was static free.
I think about this for a while and then I notice I’m sweating.
Ooh yes, that’s right, I’m here to do my physio rehab - high knee running. That’s why I’m sweating. Better get back on the job.
How long have I been standing here?
My motivation and drive is at an all time low.
I’m not inspired to do anything, and I’ve got no initiative to find anything to do. I can’t motivate myself to plan anything. Sometimes I think about doing things and that’s about as far as it goes. Everything is bad. Nothing is good. Nothing is funny. Nothing is inspiring. Food tastes the same - bland. What’s going on? Where’s my head at? Someone help me out of this. I’m stuck in a real funk. I can’t make myself care enough to do anything about it. I don’t care enough to even really be worried.
At the least I can recognise it. I’ve been like this for a couple of weeks, and while I can’t muster the force to care, I can see I’m in a bad place. If I can recognise it, then I must care a little bit. And hopefully I’ll wind myself up enough to break out of this craziness.
Am I depressed? Is this what happens when you get clinically depressed? Thank god I’m already on antidepressants. Imagine how I’d feel, what I’d do, if my mood wasn’t in some way being controlled. How do you know if you’re depressed? Is there a checklist? What should I do?
I guess the first thing to do is stop being a baby. Shape up. Look on the bright side. Take a positive approach.
God it’s so hard when I see everything with a gloomy tint. Whenever I do something, in my mind, it could’ve been done better, or faster, or neater, or more efficiently. If I look for approval I always imagine there’s a ‘but’, or an unspoken criticism, or the approval is just a condescension and I’m just being told it’s good because the person is pitying me and doesn’t want to be openly mean. Or they can’t be bothered with me flying into a rage again. But I recognise this. That’s the first step to fixing it.
I’m aware of the problem. “Don’t get sucked in”, I tell myself. Yet I feel myself being pulled into the abyss. It’s like a black hole and I’m circling on the event horizon. I’m hanging on but I just can’t break free. Even that thought is bad. I need to think – “just keep trying and it’ll happen”. I need that positive spin. How do I get it? Where does it come from?
I was put on antidepressants a few months ago. I’d crashed and crossed over into the abyss. There were no thoughts of anything except the gloom. I managed to survive long enough to see the GP and get on medication. This feels different. Both feelings are terrible. While this one doesn’t feel as black, it certainly feels a lot deeper. Have these pills stopped working? Or maybe I’m in a bad spot and need something stronger. Or maybe I just need to put on a happy face and whistle a happy tune.
Whenever I feel afraid I whistle a happy tune…..
9 MONTHS IN
I wake in the morning and before I open my eyes I wonder “Was it all just a dream?”.
But no, it’s not a dream. It’s real. I’m still recovering from a traumatic brain injury. I nearly killed myself but managed to survive. I nearly paralysed myself but managed to survive. I nearly turned myself into a vegetable but managed to survive, actually still surviving that last one.
Nope not a dream, even though so much of the last 9 months feels like a dream, it’s not.
So, it’s real and it’s not a dream. I ask myself how many times I’ll have that thought today - just the once, or will it continue again today as it did yesterday, and every other day.
There are days when I’m In-The-Dream.
I’m living in a dreamworld and it doesn’t even occur to me that it’s not a dream. Once I realise that I’m not dreaming I find the whole concept quite scary. I remember people saying they were ‘living the dream’ and it always sounded so good. Living the dream is supposed to be perfect. I can tell you, from my point of view, living the dream is terrifying. Being unaware of anything or not knowing what’s happening sounds like blissful ignorance and it is, but after a while you expect something crazy to happen. And it does.
I can be hanging out the washing in the sun and hearing birds chirping and feeling the cat rub against my legs - then blink - and now I’m in the kitchen washing the dishes – then blink - and now I’m pouring boiling water into a hot water bottle. What happened? What happened to the washing? How come it’s night time now? Did I enjoy dinner? Was it fish, or steak, or chicken? Where did this hot water bottle come from? How?... What’s happening?
And when that stuff happens and I don’t freak out anymore, is that normal?
No no no no! I can’t afford to think that way, but then I can’t afford to keep freaking out. What do I do? How do I cope? I’m not living in a sci-fi movie. This is real life and I’ve got to get back to normal.
Why am I still here?
Is the universe playing some sort of weird game with me? How many times have I cheated death? Is there something special I’m fated to do? What’s the lesson here? Am I in this world for my soul to learn something? And what on earth am I supposed to learn? Sometimes it’s good to be a slow learner….
Maybe I’m not here to do anything other than support someone else to do something special. It might not be me. Why do I think that I’m the hero of this story anyway. I might just be the sidekick. Whatever. The good thing is that I’m still here - still alive and breathing, still wiggling fingers and toes, still smarter than a cauliflower.
My decision to zig instead of zag led to my brain injury. While life-threatening, this did not kill me. Now I've heard a saying which I now know to be patently false. It goes like this: that which doesn't kill me only makes me stronger. It seems this has gained legitimacy in pop culture but it’s not true.
My crash did not kill me so, according to the saying, it must make me stronger.
What absolute nonsense. Am I stronger for it? Like hell I am. No balance, no coordination, no awareness, can't think straight, can't focus, can't concentrate, easily distracted, slur my speech, weak right side of body, crazy tinnitus, blank patches during the day, poor time perception, poor memory, less tolerant, less willpower, less patience, more melancholy, less happy. So how am I now stronger? Maybe it's something that'll become apparent later. There sure doesn't appear to be anything at the moment.
If there's a silver lining to this dark cloud it’s not obvious.
I feel like I’m in prison.
When I was first incarcerated, I was in maximum security in isolation. There were no visitors, no messages. I have a room with a window now and I’ve made it to a lower security section but I’m still in prison.
At first, there was debate about whether I should be executed but I escaped that. I was threatened with shock treatment but again I managed to escape that.
If only I could escape this prison. The sentence is open ended so I could be in here for life, but I think I’ll be released at some time. It’s not guaranteed, but it might happen.
So, I’m in prison. I have a window in my cell and I can see life on the outside. I’m sure I’ll be allowed visits outside, and eventually I’ll be released.
I can’t wait to get out. I know I have to serve my time. There’s no escaping, I can’t tunnel out or trick my way out. I just wish I knew how long my sentence is, how long it’ll be till I’m allowed community visits. There’s no-one here who knows my sentence.
Obviously, there’s no real bricks and mortar prison, nothing tangible that can be touched. I’m in the prison of my mind. I’m locked in here. Nine months ago there was nothing and no-one. I was isolated. Nothing coming in, no input. No messages got through.
Now, I get periodic release from prison but I can be recalled at any time without notice.
12 MONTHS IN
I feel so close to normal.
But I also feel so far away. I know I’m not functioning properly. But on some days, just for a short time, I feel almost there. As if I’m only a wee bit hungover, there’s only a wee bit missing. I can almost taste it. It’s right on the tip of my tongue. If I could just connect those last couple of dots….
And then it’s gone, whipped away, and all I’ve got is the smell of a fading dream-like memory.
What do I need to do? How do I make it happen?
Do I just sit and wait, or is there something I need to do, some sort of lock that needs to be opened? Or will it just happen, quietly in it’s own time, without any fanfare? Should I pretend to be normal? Go about my life as if nothing has happened? Hope that if I “build it and they will come”? Just pretend I’m sweet as and then the universe will be fooled by my theatrics and give me back my world - fake it till I make it?
I think that would do my head in.
“No, I don't like it. It's not the same” she said “it's not soft anymore and I don't like it.”
This was my younger daughter. We'd washed Blueberry - her blue teddy bear - and apparently now that it was clean it was different. She had a real spaz out. While she wasn't a teddy sort of girl, Blueberry was special to her. And with a wash, the first it’d had in far too long, it really did feel a little different. I knew that in a couple of days the feel and the smell would come back, so I tried to explain.
But she was having none of it. I couldn't deal with the irrationality of it all so I had a go at my daughter. I raised my voice and belittled her. For what? For being tired and for being upset at the very real changes with her bear. I tried to convince her that she was imagining things. Not my proudest parenting moment.
Then, later, the similarity between myself and Blueberry came to me. We'd both been through an event. After the event we were both different. Felt different, weren't so soft and cuddly, not the same. And it occurred to me that I was upset with my daughter's rejection of Blueberry because I felt, in some way, that I was also being rejected. And that if I could get my daughter to accept Blueberry and see that he was just the same old bear, with a couple of cuddles he'd be exactly the same; if I could get her to love Blueberry again, maybe she’d love me again too.
NEW YEAR’S EVE 2018
We're on holiday, and it's so much better than last year’s holiday - I'm not in hospital for a start.
I'm still slow. Better than I used to be - but still slow.
At least I'm conscious and can take in my surroundings. I feel like I'm vaguely drunk and vaguely hungover at the same time. Still wobbly on my feet, heavy headed, slurred speech every now and then, and there's always a bit of conversation that goes right past me.
2017 is done. Highs and Lows?
I'm alive, that's a plus. I feel mostly stupid, that's a minus.
I guess the plus outweighs the minus so two thumbs up, yay me. Slow and feeble. Eventually, I'll get over it. Slow and feeble is better than being dead. I’ll get over being slow and feeble but I don't think I'd ever get over being dead.
I feel like I'm waking up. Like I'm stuck in that moment between sleeping and wakefulness. Like the moment when the alarm goes off on a Monday morning. You’re still very much asleep but awake enough to hear the alarm. You eventually hit the snooze and sleep washes over you again. The wailing of the alarm drifts in, you’re aware of it but not awake enough to care. You can’t shake off the sleep. But then you get up and before too long you’re focussing on getting on with the day. So I’m stuck in that bit just before you snap alert - drifting back to sleep, alternating with spells of coming almost awake but not quite. This is how I feel all the time. This is much better than being caught in a perpetual dreamland like I was just a month or so ago. It is, however, extremely frustrating as I can't quite wake up properly.
I'm awake but not awake. The un-awake.
My life is passing before me like watching the weather on TV.
I watch the 6 o’clock news. When the weather comes on I sort of zone out while we hear about Auckland. And Hamilton. And Wellington...
But then, all of a sudden, it’s on Dunedin. Shit, where were we? What’s happening?
How did I miss Christchurch? I was watching and listening, trying to pay attention, but somehow I missed Christchurch. And this doesn’t just happen once. It happens day after day. I’ve been watching the news and weather for years. I know Christchurch will be after Wellington, it happens every day. But I miss Christchurch often.
And this is my life. I wait for something to happen. I know it’s coming up, and I know when. But somehow I miss it. It’s happened, it’s done - how did I miss it?
I was ready and paying attention, but I missed it.
14 MONTHS IN
I feel so close to normal, it can’t be long now.
The trouble is, I’ve felt this way on many occasions. When I reflect, even though I’ve felt close I have actually been miles away. So, even though I feel almost-normal, I’m probably still miles away. The good thing is that when I’m fresh and relaxed, I feel I’m not too far away from normal. It’s just that I feel myself slipping away when I start getting fatigued. It can be 10 minutes and I feel the fatigue, and The Stupid coming back.
And today, it’s not so much The Stupid that’s stalking me, it’s more The Sleepy.
I’m glad that today it’s only either Stupid or Sleepy, and not both at once. Lots of times it is both. At those times I feel like I’m in a twisted fairy tale. Stupid, Sleepy, Silly, Slowly, Stunned, Hungover, and Crazy are out to get me.
Sometimes everything is all bad, sometimes everything is all good, and I’m searching for just right. It’s like Goldilocks meets the Seven Dwarves.
And if I’m not careful, the Big Bad Brain will blow my house down.
19 MONTHS IN
When you are brain injured, you do not know that you are brain injured.
All the pain is felt by others. Others cannot move on. They cannot get over the pain, because the brain injured person is walking around the house. The brain injured walks and talks. The brain injured looks the same, but the brain injured certainly is not the same.
So how can you get closure and move on with your life when the person you’ve lost walks around and talks to you every day. They’re there but they’re not. The body is still there, but the person inside has gone. It’s like being dead, but not dead. And that’s exactly how I’ve felt; like a zombie. Can’t walk properly, can’t speak properly, can’t think properly.
Un-awake, un-aware, un-dead.
22 MONTHS IN
Today I'm driving around town in my car. I've stopped and am sitting at an intersection waiting for the green light. After a while I start paying attention, then I realise that I won't notice a green light because I'm just staring off at the footpath and not looking at the lights. It only takes a moment but then I realise that I won't notice a green light because I'm at a stop sign.
Oh dear. I'm just about to accelerate away but, in the distance, I notice some traffic approaching so my foot goes back on the brake. The traffic is far enough away for me to safely enter the intersection but because I'm feeling bewildered I just smile and nod and wait. The car behind doesn't toot so no harm done. As I drive away - safely - I wonder how often I've sat at stop signs waiting for a green light. I don't recall cars honking horns at me so I figure it can't be that bad.
2 YEARS IN
And now it's two years to the day.
How things have changed. When I'm fresh, I can walk in a straight line, I'm articulate and quick-witted, I'm empathetic. I am so much improved from where I was, and what I could've been. My issue is that I don't stay fresh for long: sometimes I get as much as a couple of hours but sometimes it’s only 15 minutes. I'm getting much better at recognising my fatigue. I notice the signs - how my balance goes off, how I become a lot more irritated. And I can feel The Stupid coming on. Then it’s time for a sleep. I sleep a lot.
If you'd asked me a couple of years ago to name some qualities my wife has, patience would not have made it into the top 10. But if you were to ask me now - after the accident and the injury itself, the months of zombie-Niven, the forgetful, self-absorbed, depressed, angry, and Stupid-Niven - I'd say that my wife is one of the most patient people I know.
My thoughts are buzzing around, like planes waiting for clearance to land. I can hear them circling, I just need to wait till they arrive. I know they are there - some are important, some are just joyriding - but I don't know what they are till they come in. Just a little bit of patience and my thoughts will get here. Unless the landing is aborted due to too much fog and they're sent away. I have a lot of foggy days.
Today I felt really clear. I felt lucid, aware, focused. For a short while. But I know the fog and fatigue will come along and ruin everything.
2½ YEARS IN
Yum yum. Peanut butter on toast.
I'm waiting for the toaster to pop and it feels like I've been standing here for ages. What's taking so long? Does it always take this long?
I decide patience is the key. If I pop the toast I know it won't be done and I'll just put it down again. Then llike it usually does it'll pop burnt. So, I wait. I guess I'm normally distracted by doing the crossword or emptying the dishwasher. That'll be why it feels like it's taking ages. I check again. Nothing. I knew it wouldn't be ready yet because I didn't hear it pop, but I just had to look anyway. I look again, again. Not ready, again.
My wife is mopping the kitchen floor and I can see she's waiting for me to finish. She's waiting for me, I'm waiting for the toast. I check I've got everything I need - peanut butter, jam, knife, plate. Everything's ready. Everything but the toast.
I haven't heard it pop but I look again. Nothing. I check the setting again. It's set to medium brown, not charcoal. Not ready yet. I notice the toaster is up, not down. If the toaster is up, the toast must be done. I look for the toast. It's not there. What's going on? Hold on. There's no bread in the toaster. There's no bread in the toaster? Wait a minute. There's no bread in the toaster.! That's probably why it’s not ready yet. I'll put some bread in the toaster. The toast will be a lot faster if there's bread in the toaster.
I look at my wife. She looks at me and shakes her head. I see the funny side of things and chuckle a bit. I must be getting better because I’m amused by it all. A couple of years ago and this would have spun me into a real dark mood. Possibly a spiral into the black pit of depression. It’s good that I’ve improved enough to laugh. Obviously, I haven’t improved that much or else I would’ve actually put bread in the toaster.
3 YEARS IN
Three years. Three whole years.
It's Christmas Day and my 13 year old daughter is in tears. They are not happy Christmas tears. She's recounting a memory from three years ago and now she's in tears.
She remembers walking in to the hospital to see me in the very early days. This was the first time she'd seen me since my fall. She knew that I wasn’t going to be crippled in a wheelchair. Relief at that news but still very concerned about my brain injury. She asked me how I was, and I smiled and said "I'm OK, my Sunshine". She told me that that was when she knew I would be alright. I knew who she was, I could understand what she was asking, I could smile, and I could speak. She was afraid I might be a dribbling mindless zombie, but that short exchange was enough to let her know I was going to be ok.
Three years later, she dissolved into tears just recounting the story. I imagined what she must’ve thought at the time, how she must’ve felt. To cry just talking about it three years later means she must have been extremely traumatised at the time.
I think about those first few days - the days of which I still have no memory - and I can’t even imagine the uncertainty, the questions, the worries, and the tears.
And it breaks my heart that she was so distraught then, and so distraught now.
It's been a long hard three years. It's not over yet, but it is easier. More manageable. It's still hard but it is easier than it was. And getting easier as time goes by. I don't know if it'll ever be Easy. It is easier than it used to be, and it is getting better. I don't know that life was Easy pre-accident, but I do know that it's not Easy now.
Who's to say my life is worse since I zigged?
It is certainly different. It is not easy, but it’s not necessarily worse.
Given the lack of work stress and the abundance of time I spend with my daughters, you could argue that my life is better. That part of my life is definitely better. Parts of my life are better and some parts are harder. It is different, but is it better or worse? I really can’t answer that. It’s different to how it would’ve been had I not crashed off my bike. Maybe all I need to know is that some bits are better and some are harder. I don't know what my life would be like if I had zagged, rather than zigged, so it's impossible to say if it's better or worse. Life is challenging now, but it would've been challenging in some other way if I hadn’t smashed my head. I can’t say if things are better or worse. I can say if things are good or bad. So, what is it?
It’s all about perspective.
I'm happy to have extra time with my daughters and my wife. I’m happy to not be working massive hours and stressed at work. I’m happy that I’ve achieved an early retirement.
I’m not happy that I’m not biking lots - but I can find a new pastime. I’m not happy about my lack of exercise - but I can do something about that. I’m not happy that I’m not fully recovered yet - but I’m working on that.
I’m happy about a bunch of stuff - that’s good. I’m not happy about another bunch of stuff - but I have action plans to make the not-good stuff better. So in time the stuff I’m not happy about will no longer be an issue.
I’m happy about a bunch of stuff, and there’s other stuff that, in time, I’ll be happy with. I think that means that life is acceptable now, and getting better all the time. And that means that, in time, life will be good.
So, the outlook is good. With such a rosy future I should be happy about life right now.
Do I believe that? I think I can buy it. I think I can get on board with it. I can believe it.
I just don’t feel it….yet.
This journey is not yet done. Life is OK and going to get better. I’ll just keep taking another step. One foot in front of the other. Just grind it out. That’s just life. That’s the way it is for everyone.
Right-o, best get on with it. I get to spend much more time with my children. I’m a lot more aware, a lot more of the time. My memory is pretty good these days. I feel more on to it - there’s far fewer dream sequences now. I feel I’m a lot more accepting of my new life. I really struggled with my disabilities for a long time. I know I’ll suffer from fatigue and being dazed and confused for years, maybe even for the rest of my life.
I also know I’ll suffer to a lesser degree as time goes by. I’m not as good as I was pre-accident - not all day anyway. Sometimes, for a few minutes at a time, I feel as good as I used to - but just not for long. This is significantly better than just a few short months ago. I will continue to improve mentally and physically. I feel that if my recovery were to halt now, I could probably cope with that. I guess that’s acceptance. Any further improvements are real bonuses. I’m happy with that.
I still make improvements from time to time, and so…..
I’m happy ☺
EPILOGUE - DON'T WORRY, BE HAPPY
Pre-injury I was a fit, active, articulate and clever 46 year old. Post-injury I resembled a 90 year old with advanced dementia who had just had a stroke.
Now that I’m more than 3 years in and still making made some good recoveries, I have some thoughts on how to navigate through a traumatic brain injury:
This first point is specifically for families of TBI survivors:
- Make sure you have all the details about everything
Ensure that the nurses, doctors, specialists, therapists discuss everything with you. As the primary caregiver you need to know what’s going on - why, when, how long, diagnosis, prognosis, appointments, procedures, therapies and anything else happening.
I could never understand or remember what was happening; appointments, medications, or why I needed to do anything. I was told many details but I was confused, bewildered and overwhelmed with no memory. I would have been much better served by my wife being given the information. My wife would’ve understood and remembered it all - and made sure I did whatever it was I was supposed to.
- Look after your relationships
Be mindful that there is a very high divorce rate among those who have sustained a traumatic brain injury - up to 75%. It’s not just your marriage that can be damaged, it’s all your personal relationships.
You will be forgetful, irritable, aggressive, self-absorbed - sometimes all of the above. Your loved ones still love you, but you are not yourself after a brain injury. It’s difficult for people to relate to someone who looks like you but behaves in very different ways - especially when you’re a self obsessed grumpy old bugger. I’ve been really hard to love and I’m extremely lucky that those close to me have known my behaviour is due to my injury and will pass with time.
- Look after your mental health
Your situation may look pretty bleak. It’s important to find some sort of silver lining in your situation.
It can be pretty tough - personal relationships breaking down, potential for losing your job and income, people sticking their noses in all areas of your life on top of forgetfulness, fatigue, aggression, self-obsessive behaviour - so finding some sort of positive is critical.
Some of my good things - I wasn’t dead, I wasn’t a paraplegic, I wasn’t brain dead. The biggest thing for me was, and still is, my wife and two daughters.
Don’t ruin your mental health worrying about your injury. Be happy about your recovery.
- Sort out the admin
If you have life or health insurance make sure you are on the case. Make sure you are receiving all the benefits and payments you are entitled to. Also, make sure you have a good ACC case manager; someone who understands brain injuries and is forthcoming with information and support. If they are not good, get a new case manager.
It’s a good idea if someone else does this for you because it’s likely that it will be beyond your ability to do so effectively.
- Do what the health professionals tell you to do
It may sound silly, but they actually do know stuff about head injuries. Listen to what they say and follow their advice. It’s OK to ask lots of questions. Even if you don’t like what they say it’s still really important that you do what they tell you to do.
I thought a lot of advice was stupid at first but after a while I realised the advice was helpful.
- Forget about your job - for a while at least
It’s not the end of the world if you lose your job. ACC/insurance should kick in reasonably quickly so you will have some sort of income.
Don’t fret about your job. Your recovery is much more important than work will ever be.
If you push yourself too hard to get back to work you will do yourself a disservice. It is likely to delay your recovery, and any work you achieve will be substandard.
I lost my job but ACC have been good to me. I don’t know if I’ll ever go back to work and there was no point trying to rush back 3 years ago.
- Things will get better with time
No one can say how much better things will get, or how long it will take - but things will improve. The improvement may be cognitive or physical or even just an improved attitude towards your new life.
- Accept your limitations
Understand that you’ve had a life changing event and things are different now. Recognise that your cognitive and physical abilities have changed and there’s no amount of angst that will change it.
What will make changes are things like listening to your councilors, doing your rehabilitation, and being patient. Be aware that whatever your new limit is today, it’s better than yesterday and it may get better again tomorrow.
- Take each improvement as a win and enjoy getting better
Do not compare yourself to pre-accident - you will find yourself wanting and that gets pretty depressing. Compare yourself to how you were immediately post-accident - you will see how much you’ve improved and that’s a good thing. “Better than yesterday” is much more positive than “not as good as I was”. Every improvement should be celebrated because it means that you’re still getting better.
- Smell the roses
Enjoy the little things in life. The things that you were too busy to appreciate before your injury.
Things like - Listening to music, Sunlight on your face, Laughing.