The Brilliance and the Madness - "letting Brain Injury out of the closet"

By Anne A McKenzie

Non fiction, beautifully illustrated book, my journey of healing, recovery and empowerment after a brain injury sustained from a dreadful cycling accident.

A down to earth story set amongst the everydayness of family life, along this path of loss and adjustment, the frustration of brain injury, having all aspects of life compromised, the longevity

• Language: English
• Publisher: Publicious Book Publishing
• Release date: Sep 6, 2012
• ISBN: 9780473212223

Book preview

THE DAY

There would be no warning. There would be no preparation, no sign, and no choice. There was just acute danger ahead, waiting for me.

No imagination could conjure up the unforeseen thing that would happen, wrenching away my perfect and effortless functioning, casting an indelible mark over my psyche, breaking my body, and propelling me on a journey which would have me clinging to my self-esteem, and rebuilding my life. This journey was not the plan.

*

Any cyclist will tell you about the thrill – the adrenaline rush, the excitement, physical exertion, freedom and adventure of being on a bike – the joy of it, that only cyclists know.

I also liked what it represented for me – a piece of my identity, an escape from the parameters of everyday life, a part of me left untouched by motherhood, womanhood and time. The mornings spent on my rides were mine.

*

It is November 2005.

With Banks Peninsula on my doorstep there is no stopping the cyclist in me! It is the remains of an ancient volcano, a myriad of roads, hills and bays, scattered around the coast with quiet reverence. The Summit Road, visible from my kitchen window, extends out and around the Peninsula and the Port Hills, connecting with Lyttelton Harbour. I often look out and think, I just want to be out there.

We regularly rode with views of the sea, the hills, and the unpredictable weather as our backdrop – us, and hundreds of other cyclists.

The plan on this particular day is to ride about 70km. Sunday morning and we are up and away with no time to waste on a route that will lead from Sumner into the hills, a ride amongst scenery of great beauty, with a friend. What could be better?

Everything was going smoothly as we peddled up Dyers Pass, talking and enjoying the grind with the shelter of the trees on the left-hand side. The sun was out; there was a breeze swirling around. It was a good day. We stopped at the top of the hill and, after a drink, we decided to cycle down the other side of the Pass, into Governors Bay.

I am in the cream and black striped top, with the pink patch on the sleeve, and a pink pocket at the back. My shorts are hot pink. I made my outfit. My helmet is red.

I think back to the day I bought it.

Are you sure you only have red? I ask.

He rolls his eyes up into his head.

What difference does it make? Who cares what colour it is?

I do. But all my outfits require white. I want white.

He rolls his eyes again.

But the ride is this weekend and there is no time, so I buy the red one.

Right, she says, let’s go! and off she flies, gutsy and enthusiastic as per usual.

I begin to follow, easing my feet into the cleats of the pedals, adjusting my posture, starting to tootle downhill, hands on brakes, lost in the concentration of the descent before me.

…And this is all I remember.

Off I went towards my crash, towards my injury, and towards ‘The New Me.’

AN INTRODUCTION

A dream. I am swimming in a monstrous dream of movement and muffled noise and pain.

Despair – it is bad and it is her ninth birthday and what happened to my beautiful bike?

Nothing is clear, but I do know my name. I can repeat ‘car, truck, bus’, and I am in good enough shape to be sent home. There is a lot of blood and I can’t help but yelp as I am hurled onto beds and wheeled in and out of doors.

This is the opening, the beginning, and the introduction. There has been a shift. It is not just a hospital, it is a new circumstance, a new way of being and a new life, wondrously attached to the old and wanting to keep looking back at it. It is literal and it is figurative. I need my silent piece, the part that I have come to rely on at other times when it’s been hard.

A kiss, a cry, she is just a little girl and does not like this. Her little hand shakes as her shoulders wobble with her tears. It is too heart-rending for her. But she is brave.

Her brothers are quiet. They say the eldest stood by my side, unflinching. The other son decided against going in for a look.

A laugh. Yes, thank you for reminding me – jeez I don’t look very good.

It was like trickery. I had been on the bike so many times before. And I thought I knew that road – every straight, every corner, every uphill and down dale. I just loved the toughness of it and the way I could travel so far. I thought I was pretty special, because I was a recreational cyclist, never especially competitive. I got my thrills just because I was there and a part of it, and capable. And it was good not to rely on running for all of my exercise.

Maybe something came over me? No, an object came at me – flew out of the trailer attached to an oncoming car. I am certain that if I had hit a stone on the road I would have remembered it. And it would take a very large stone to do that much damage to me and to my bike.

I still wonder what happened. I had so many cuts and bruises as well as the obvious fractures and gashes and a smashed up helmet. Perhaps I hit the ground and rolled a few times. That would explain the grazes on my right shoulder and right leg. I wonder if I saw anything coming – the car or the mattress? But I do not remember anything, only stopping for a drink at the top of the hill.

It still plays on my mind, the experience of having had time wiped out, having no account of it, no way of claiming or describing those minutes and hours. Perhaps this is what actual death would be like, except without the waking up afterwards. To die in an accident with no memory, no pain, everything erased, even the moment itself. I feel a little bit exclusive because I know this. I want to enlighten others with this truth, but I don’t know how.

So now I am bundled up into the front seat of the car wrapped up in hospital linen and being sent home. I feel sick. Alone, I navigate around my bedroom like a jellyfish on roller skates.

Actually, the best part is about to happen.

ATTENTION

A crisis. A combination of attending to the practical whilst managing the emotional. Although I felt unbalanced and had moments where the room was spinning around, at this point I was on some kind of high. I’d had no idea before, no reason or opportunity to experience love like I was experiencing it now.

The phone rang. It rang several times each day for about a week; so did the doorbell. There were flowers. I loved knowing that they came from someone’s garden.

And there were cards and letters in the mailbox, and when the children hopped off the school bus they would proudly bring a bundle of them to my room.

And there was the Press, and the police. My room was abuzz.

A card came from a property developer I had met through work. He began – ‘I am shell-shocked … and want you to know you are more than a number in statistics …’ He went on with a story about the poor little seedlings on the forest floor, how they get stood on and crushed by falling branches, and how they have to struggle to find some sunlight, and how when it rains their tiny roots become sodden. But, the story goes on, because they have had such a struggle, one day they become the most magnificent trees in the entire canopy.

Another from a client ‘one step at a time …’ and the most astounding bouquet from the landscape designer’s garden. It would have been joyously appropriate for the altar of any grand cathedral.

People who hardly knew me, the Sumner community, people just ‘doing their job’ like the policeman. Wow. How could I not be in wonderland? How often in life is one acknowledged, encouraged, and supported in such surprising and open ways?

But it did not last, of course. And this was the step that I was so unprepared for, so ill-advised about. This was the beginning of the phase that was the complete yang to the yin of the flurry of attention.

TRAUMATIC BRAIN INJURY

‘A blow to the head may shake the brain around inside the skull. This can cause the brain to get bruised if it hits the inside of the skull hard enough.

The brain is made of many thousands of long, thin nerve fibres. Some of these nerves can get stretched or broken if a blow to the head is severe enough. The brain also has blood vessels; some of these may tear and bleed after injury.

Bruises, swelling, torn nerves and broken blood vessels are the causes of symptoms after a traumatic brain injury or TBI.

The most common collection of symptoms after a TBI is known as post-concussion syndrome. These symptoms are a part of the normal recovery process. The symptoms that can be expected include reduced concentration, irritability, tiredness, feeling low, memory problems, headaches, trouble thinking, dizziness, and sensitivity to light or sound.

Few people will experience all the symptoms, and symptoms may not develop until days or weeks after the accident. Most people will be back to normal within three to six months, and the best way to deal with the symptoms is to resume activities gradually, and get all the rest you need.’

(Recovering From A Mild Traumatic Brain Injury, An Information Guide. Concussion Clinic, Burwood Hospital).

Recovery happens spontaneously as neural pathways are rewired, and with a programme of education and management of your symptoms.

Did I recover within six months?

No. I did not.

I could hardly stay awake for two whole years.

And when I was awake, it was complicated.

‘Post Concussion Syndrome can affect up to 20–30 per cent of patients with mild, closed-head injury comprising incomplete recovery and debilitating persistence of post-concussion symptoms’ (Marcus Heitger Van der Veer Institute).

Difficulty – ‘Mrs D, Mrs I, Mrs F F I, Mrs C, Mrs U, Mrs LTY’. I think of the childhood chant, skipping with the rope on the old concrete path.

A SQUASHED PEA

It is a very human thing to want to change the world at least once in one’s lifetime. And when life gets tough, we often adopt the view that ‘Something good will come from this. It has to.’

This is our way of making sense of the nonsensical – of finding our footing and establishing a context that makes life palatable. But it can be very difficult to know, from the outset, what the good outcome might be. That the goal after serious injury is ‘independence’ and a return to good health is never questioned. This goal is the ultimate; a great big dazzling red ball of light and warmth in the sky. But how are we supposed to see it, when we are weighed down by so much? The view to the goal is obscured by layers upon layers of work – physical, emotional, practical, mental and spiritual work.

I think about The Princess and the Pea and I am the pea, a tiny little squashed pea, weighed down by a mattress and a mountain of work.

She said, Every time you go to bed for one of your long sleeps, just imagine you are a Spanish princess.

I needed a metaphor to erase the frustration I felt every time I had to sleep while my life was waiting. I hated it, missing out on the day, missing out on what I could otherwise do and be a part of – the slog of it, the unfairness of it, the unrelenting nature of it.

I have never felt like a princess.

I felt at times like a meat patty, flipped from side to side on a grill, sometimes with love, and sometimes not.

After three years it suddenly came to me, the thing that I, the little pea, could do.

Nobody tells you. Nobody sits you down and gives you the ‘goss’ on this job called rehabilitation. There is no job description, no training, and no tips on how to go about it.

You are thrown in at the deep end, a broken little person sent in all directions to all kinds of people and told to do all manner of things and before you know it you have your first lot of homework. All this before you have barely had time to figure out how to get to the bathroom by yourself.

Going in, cold turkey, naive, open, trusting, desperate to get better, and, with a brain injury, your motor runs dry ALL THE TIME.

It is madness. And one day you will say, I need to recover from this recovery.

You want out. You have had it and do not want to do it anymore. You are burnt out, rotisseried, sick of being the patient. You want to get on with your life and be free of this process, have your afternoons back, stop feeling so pushed and drained all the time. You do not want to be good-natured about this anymore. You want to scream.

But you also wake up one day and feel so grateful, so much better, and quite amazed – you have experienced moments of love and kindness like never before. You realise how far you have come and look back on the bad days and wonder if that was actually you. And the sunshine rushes in thick and fast.

So what do I choose? What is the thing that I could do that would fulfil my initial, internal wish that something good might come from all of this?

I choose to write this book, to create something that is useful and real, not just for me but also for someone else.

I think of the words ‘insight’, ‘guide’ and ‘reassurance’.

I imagine it to be feisty and sweet.

I want it to be an illustration of the yin and yang of life.

I have no fear because I know it will all be true.

I want it to be better for the next person.

THE BAY

Well, you are right, I would agree, this is a nice room to be sick in. The house is