Anne Margaret McKenzie
It was a cycling accident, out of the blue, unpredictable, and like most events that bring trauma to the brain, not something I'd ever expect would happen to me.
Unseen and unimaginable, Traumatic Brain Injury is an injury to the hidden and most essential part of yourself, a crippling injury which can compromise every aspect of your life, a triple whammy of cognitive, functional, and behavioural problems, and the fallout which hits you where it hurts — in your identity, your career and social performance, in your parenting skills, in your exercise program, your sense of self worth, and in the map you thought you had painted of your life.
I'd always been organized, energetic, fit, busy, bright, and competent, but after crashing off my bike and landing on my head, bruising my brain, the identity of my person, my traditional, always-there-and-reliable person, changed.
Blacking out every day for up to seven hours at a time, all those daylight hours sleeping, sunken into unconsciousness. I'd done nothing else with my day, hated being like this, forgot what an afternoon looked like, and it just did not stop.
I became doormat woman, disorganized, unable to initiate the simplest of tasks or concentrate. My broadband was down, all the time, leaving me to push through barriers to dial-up connections to put my socks on, put my shoes on, to get to the store, and to actually buy something.
And here is the attention you draw to yourself, your imperfect demeanour and "presentation" attracting nauseating commentary.
Although BI is common — about 90 occur in NZ each day — it is misunderstood, lacks status, and is shrouded by the myth that it is always just concussion and it will always just go away. You can see someone dazed from concussion, but I cannot show you the lingering injury to my brain; I have no tangible evidence, so others lose interest.
Your brain-injured symptoms are therefore not always associated with your actual broken brain — others tend to think "highly strung," "weird personality," "depressive" . . . because people are often ignorant, mighty quick to judge.
"What is the matter with you?"
You are locked out of your life and you see little fragments of your old self, falling like feathers into the corner of your room and you suck in the horror — how can this be happening?
It is madness, the unleashing of a TBI upon a very bountiful life, rendering it dormant, nullified, slow and yet equally as impatient, with frustration building like lego inside of you. This is you, not the same.
There is the contradiction that you are still intelligent, rational, and aware, and you can do nothing to get out of your paralysis.
I had three years like this, and only very slowly, over time, have the blackouts and the functional problems improved.
Brain Injury creates layers of problems . . . the actual symptoms on top of having every aspect of your life compromised, on top of the fallout in your routines and family life, and the blame you place on yourself, your fall in confidence . . . on top of trying to get better, trying to manage, the pressure ACC puts onto you, on top of the uncertainties and grief and on top of having few resources to help you effectively manage any of it.
It is like plummeting from CEO one day to a woman without the multitask button the next, reduced, etching a circle on your bedroom floor from walking round and round and round in one, dialing up the connection for the biggie of the day — get some sort of meal on the table. The adjustments you have to make take, learning to feel better about yourself . . . take a long time to settle in.
I knew I had a story up my sleeve, a good one that when written would be as biting as it would be tender, a journey of madness and of brilliance, the unleashing of a brain injury on a very bountiful life, the merry-go-round of its consequences, the crashing realities juxtaposed by the laughter, the progress I made, the humanity, the fire in my belly, the terrible jokes, the view from the window, all that I was shown and all that I learned.
My book is down to earth, about healing and recovery in your own backyard, amongst the everydayness of life. I love this aspect, just a mum from Christchurch, and this is what you have to go through to get better, this is what it has taken me, this is my story and now I share it because sharing is healing, this is what I can do, and I know it will have an impact on someone.
It is a decisive book about empowerment, a thoughtful book, a real story. It did not happen for a reason.
"It happened, now what am I going to do about it?"
It is not about searching for something or becoming someone, it is about being someone, about plain old pain, and grief and uncertainty, and how much attitude matters, how much your own conduct matters, creating your own path, working away towards recovery.
"It is not about needing and wanting to have control. It is about needing and wanting to feel empowered."
Whatever might happen to unsettle your life, hurt you, complicate things, dislodge you . . . you can rely on yourself, and, your value does not change. This is the turning point, where self worth is separated from achievement, and goals and bucket lists are about passion and adventure and just actually living your life.
The great thing about brain injury is the service it does to you. It shows you the beauty of being able, and allows you to see life, and yourself, very clearly. I think every day is sort of astonishing, there is no pressure, no expectation, no obsession, just the simplicity of being here and being able and just actually living your life.
MY AWARD-WINNING BOOK
My book won BRONZE MEDAL at the IPPY AWARDS 2013. My husband and I flew to New York to receive my award.
What a moment. It's hard to convey the meaning of this for me, the accumulation of my rehabilitation journey and my writing journey at a wonderful book awards party on 57th Street.
"I offer my story to the universal story of what it is to be broken, to be human, and to be alive."