Timothy Giles has written a first person piece on the lasting impact of a brain injury. Photo / Greg Bowker
Timothy Giles has written a first person piece on the lasting impact of a brain injury. Photo / Greg Bowker
I took the punch, like glass. I didn't break, I shattered. from Collision by Sam Hunt
It was two punches that shattered my life and I've spent years picking up the pieces. More than a decade on I accept that some bits will always elude my reach. The challenge I live with, is piecing together a rich and happy life with what I have.
Traumatic Brain Injury (TBI) isn't rare, thousands of New Zealanders live with its effects. Mine are pretty common place: fatigue, headaches, confusion and memory loss. But these aren't the hard bits for me, mood and emotion are my biggest post-TBI difficulties. Personality is an interesting thing to define, the attributes that make us who we are. An impact of my brain injury is a profound personality change. It's been a slow realisation that I am not the man I was. I'm grumpier, less patient. Not as kind or forgiving. Part of this could be a consequence of the ever-present fatigue. The need for afternoon naps and sometimes morning ones too, is immensely frustrating. I've lived since my mid-30s with the nap sustained pattern best known to parents of toddlers.
My life with TBI comes with an awareness of fragility, of vulnerability to injury and impairment. Pre-injury, I loved the physicality of an active life, sport, skiing, off-roading, riding, water-skiing, surfing, adrenalin-seeking. I'd have a go and loved it all. Now I am at best a cautious participant and, too often, an habitual spectator.
Now to the too-often asked question: how did it happen? Two separate events, a random late-night assault, two punches, both versions of the cowardly punch - one to the back of my head, the second, also from behind, to my left temple. Damaging and life-changing. The second event, some years later, a clash of heads in social football, knocked me out. Falling unconscious, to an unusually hard winter sports field, I copped a second blow as my head hit the ground. This set my recovery back years and I seemed to show a susceptibility to concussion that had clinicians recommend a quieter, more cautious life, sustaining recovery by a focus on concussion prevention.
There is more to these injurious events and I am aware that your curiosity may not be satisfied. But it is a tedious topic. Like everybody I have ever met with trauma-related impairment, I tire of recounting an historic event that now carries minimal, if any, useful information. The relevant questions of "what is life like now?" and "how does it impact daily experience?"
That daily experience is life-defining and unrelated to the historic cause.
My days are shaped by fatigue, which means I sleep more than I want to and more than any other healthy adults I know. Physically, I am fortunate to be fit and well, with few symptoms. Headaches are persistent, different types of varying intensity. Some related to my sensitivity to light and noise. That people enjoy noisy cafes or chat happily on a busy street, amazes me. Friends expect me to dim both lights and music, to sit faced away from sunny windows. This lessens headaches and lengthens time I can focus.
Fatigue undoes all my good work, every day. It is the defining experience of my cognitive impairment. Just as the physical fatigue makes a nap inevitable, mental fatigue is inescapable. Mornings are good, long or intense days are not. In some ways brain injury is an intriguing experience, I can feel my thinking work well and slowing when it doesn't. Frustrating yes, but an interesting experience. To manage it, I have grown skilled at observing the ebb and flow of my mental energy and capacity to think and function. Prevention is again recovery's theme. Keep my days short, rest before and after busy times. A productive day at work demands a few quiet nights at home. Planning and resting to perform. The balance demanded by a tiring brain is, when I approach it positively, an interesting life puzzle.
Not so intriguing is the experience of memory loss. Confusion too. I mention them together as I think they are versions of the same cognitive loss. Confusion can overtake me anytime, anywhere and usually arrives mid-sentence. We all get confused, we all know the feeling, losing our bearings, context, the thread. Usually due to overload, of stimuli, stress or tiredness. For me, it is like rain in Auckland, comes from nowhere, happily doesn't always hang around, but is guaranteed to return.
Timothy Giles with his daughter Diva. / Photo by Greg Bowker
Memory loss feels similar, though less predictable. I have whole years of my life I don't recall. Buildings I know I worked in and the companies I worked for. But the most I can access beyond that, is a few snapshot like memories of a colleague or three, and the occasional delightful or outrageous customer. Emotion holds memory too. I feel good about times in a place, but can't explain why. I just accept emotion as memory and assume I enjoyed being there, that I learnt things, had friends.
Memories of my high-school years are scant, episodic. A bit like the postcards my brother used to send from his various trips. Supplemented by the stories he'd later recount for amusement or shock value, colouring in the static image. Old colleagues and schoolmates are similarly helpful. They back-fill holes in my memory. Nostalgic friends and acquaintances are a rich memory resource, their recollections animate my static mental imagery. I get to listen and choose to take their recall as my own - or not. It's a creative form of recovered memory. Emotion is a source of remembered meaning. An old friend connecting on social media may not prompt much for me in the way of detail, but will often spur an emotion. Sometimes fondness, caring, amusement, at other times it's shame, suspicion, fear. Getting to know these people again, I've learned to trust my emotional memory. I have learned enough to occasionally apologise for errors and omissions I only hazily recall. I have apologised a lot and have plenty more to go.
Apology is a powerful force in healing and enjoyment of the life I now have. It surprises me that it wasn't included in the treatment I received and I've been blessed by some generous clinical and healing input. I separate healing because I've met just three clinicians who I experienced as skilled and committed to helping me heal.
One neuro-psychologist, who in his own time, unpaid, visited my daughter, phoned her mum and sat with my then-partner, to explain the ill-mannered, inconsiderate and offensive ignoramus who had taken possession of the man they had known and loved. Thank you James. I was still some years from recovering the insight required for that conversation. His excellence testament less to professionalism than love.
I had no GP. You see I was a typically bullet-proof bloke until, I suddenly and traumatically, wasn't. Somehow through the persistent fog of brain injury, I found myself in the care of one, so expert in his field that he practises humility and listening. Partnering me in our fight for well-being. Believing I know something of my own experience and how to persist through its malevolent embrace. David, kia ora.
I forget the name of the occupational therapist who would arrive at my gloomy rented apartment, insist I answer the door, bully me into movement, harry me through the humiliation of exercises to balance, grip, turn, stand, sit and stand again. The tasks mastered in childhood that would derail and rob me of maturity, masculinity, identity and hope.
The famous Dr King said labour is dignity. Together, we laboured at the most basic physical movement. You'd be proud, forgotten healer. Not only can I walk stairs unhindered by vertigo and unaided by handrails, I can run the bastard things.
Healing is layered and long. Pain clinics, rehab sessions, well-being workshops, raw food diets and meditation, I've done the lot. "You're our model patient," a neurologist I never trusted, told me. Which was funny, as I'd ignored their advice.
But I listened to the ex-athlete who told me, "When my body was broken, I led with my mind. Your mind is broken, lead with your body." Faafetai Michael.
Brain injury camp was special. A weekend away with other men, women were there, but I fell in with the men. Wordlessly, we knew. Instant identification and acceptance across barriers of ethnicity, age, education, attitude, experience, and ability. Sitting silently together in the shelter on the marae atea remains a powerful experience of healing. As efficacious as it is inexplicable. At least to me. But then I'm brain-injured, what would I know?
I know this, there is a populous club I am in and not a single member joined willingly. It is the chronic injury club, perhaps you, too, are a member? On qualifying, we each receive an access all areas pass to all manner of unwanted life experiences. To physical, and emotional trials, challenging our spirit. At brain injury camp, and in the pain clinic, alongside a lady at weekly meditation class, I learnt that it is a privileged club of remarkable people. Wonderfully brave, humble and encouraging types. The caring ac-ceptance of someone who is in pain, is as comforting as my grandmother's goodnight kiss. No evil can defeat it.
But it tries, the most insidious evil is mood. Tired and hurting it is easy to lose hope. More than a decade on it is hard to persist. Prevention is my insurance. Preventing loss of belief.
I have to believe that my new life will be rich, though with so many years out of the workforce, financial riches are unlikely. I need to believe that my energised moments of performance make a sufficient contribution to friends, whānau and my work, to balance the more sustained mediocracy of fatigue. Resilience has become a focus. There are two parts to the word and I am well past half-way there. The first, resile from, to draw back, I've mastered. The second "siliere", the same word root as elasticity, the springing back. That is what I work at now.
Here is recipe, available in any summary of positive psychology.
Find and express gratitude every day. Many millions have it far worse than I, how dare I not be grateful? Actively, deliberately thankful for what I have, experience and am. Demure daily from the slights, frustrations, hostilities and harm. Favour instead the thing that enriched me today. Made me happier, wiser, more humble, more amused, more comfortable in me, as and where I am. Commit to telling someone this thing every day, in person, phone email, anything. After a while the hunting those moments makes it habit not just to notice them, but to dwell on them and to find they shape a day, a week and I hope, a life.
Lastly is social connection. When I lost, they tell me, 60 per cent of my vocabulary, I wouldn't leave the house. From presenting television, hosting talkback and running a dynamic little PR firm, I couldn't find everyday words, had forgotten how to casually kōrero. If I didn't know how to communicate, I didn't know who I was and not knowing that, how could I leave the house?
Only by the grace of others, was I dragged into connection again. Here, in the energy, acceptance and inclusion of others, I find the barrier to the black dog or whatever it is that darkens my mood, consumes hope.
So each day I find a gracious acknowledgement, spot in someone an act or choice not to act, that makes this a better place to be. It is gracious because I cannot thank someone for something they do that benefits me, the challenge is to tell acknowledge, validate, praise someone for what they do (or refrain from doing) to another. Searching for these often small choices of others helps even an injured brain understand the goodness and loving that is all around us. It is an investment I draw on in the days that I can't see it. At 49 I am ageing, and here is the silver lining in my brain injury cloud. My athlete mate and mentor beat the medical fraternity to it when he got me back to the gym, insisted I first walk, then jog around the block.
"So what if you sit down every 10 metres? After two reps? You are in the game." And I am. I've run marathons since brain injury, completed a half-ironman, swum across some big, beautiful harbours and ridden round Lake Taupo with a mate who, by waiting for me at 5am, forced me into winter's icy pre-dawn dark. Kia kaha Todd. I am fit and strong because if I exercise six days a week, my brain works better. I sleep less. The headaches can't take hold and mood is more of an ally. I have no doubt I am physically far fitter than I would have been without TBI. Grateful.
The regret I hold is the loss of friends. Every time it is my bad. How many times do you invite a friend for dinner, lunch, drinks, coffee, when he enthusiastically agrees, only to not turn up? In my experience the best friends last a dozen or maybe more, before it gets too much. In this I haven't yet got any better. A big day means a quiet night. A busy week a solitary weekend. I owe a lot of apologies. But there is always hope, at least, on the good days there is. My task is to create more good days. After trauma, it is resilience that creates the good days. To resile from and then to spring back. Or perhaps forward. I can't spring back into my old life, that is lost to me. That father, brother, friend and partner, lost to those who mattered most to me. He is equally as lost to me.
Spring forward then, into a new different life. A new but not improved me. It's all you've got, so accept it and make it meaningful. Start by being grateful for the moments, the blessings and privilege, the light if not the shade.
I am grateful, for example, that I finally wrote this. I've been thinking it over for years. I used to be paid to write, this is another piece of life I've finally managed to gather up. Now what can I do? The opportunities are endless, exciting. But first, I think I'll take a nap.
A poem I wrote for my daughter on memory loss
Tell me again Tell me again, what we did and where we went. How we were, and who I was. Memory loss is two distinct words two separate things. You hold the memory for both of us. Loss, comes when you go. Come and gift me remembering. Tell me again.
Timothy Giles
In Vivien's words
Vivien Bridgwater is Timothy Giles' former partner. She gives her account of the impact of the injury.
One day Giles came to visit me and told me that he had been assaulted the night before by four young men. At the time I didn't realise how our lives would all change. We had separated some time before and I was the mother of three children, the youngest "our" daughter. After the first incident I gradually became a solo mother. Giles had left all of us.
I was consumed with the impact of childcare, the practicalities of a working mother, a burgeoning career, and the care of all three children. My eldest daughter became a teenage co-parent to her baby sister.
Our daughter created together has been on a different and long journey with her father. For her, much closer, much harder. For her it was skin-to skin, heart-to-heart. It is a journey and commitment for life. The years have passed. She is now a young, beautiful, compassionate, focused, smart, innovative, business woman, a tribute to both of us, our family, and shared community of support.
I am still careful what I say so not to cause offence or upset. I still don't understand some things. I still worry. But what I do know after all these years, that despite the journey, the life-changing events, despite memory loss, sadness and grief, pain, grumpiness, frustration, and long silences, Giles did not leave us. He did not leave his beloved daughter.
Giles comes to us with love and his soul fully present. I know he still feels alone but it is a journey that we are all still going through, together. We are stronger as whānau and as individuals. The power of love holds all of us safely in kind and generous arms.
Brain injury not 'head injury'
In 1994 the World Health Organisation adopted brain injury as "more descriptive of the actual injuries". The term "acquired brain injury" is used by health professionals to describe any damage to the brain not present at birth but excluding degenerative diseases such as dementia.
Acquired brain injury includes a range of traumatic brain injuries - caused by falls, work accidents, motor vehicle accidents, sports and recreational accidents, assaults, etc and what we could call medical brain injuries (tumours, aneurysms, strokes, brain infections). Support and advice
