Meet Suzie – she has been living with a brain injury for 20 years. She writes about her experience and explains why it is important for people to understand brain injury.
Hi, my name is Suzie. This is my story.
At 30 I was working in a job I loved and thought that I had the world at my feet. Life was hectic but fun. I worked full-time in advertising, studied part-time and hoped to be a mother in the not too distant future.
It started like this:
I fell from a horse, breaking my skull and damaging my brain on impact. After more than 2 years in hospital and rehab my world changed dramatically. I was left with permanent damage to my brain, including epilepsy. I was unable to work a full day. I had to sleep every day, to overcome fatigue and manage seizures.
Several years after the accident things began to move forward and I had my first child. I thought that I could manage without daytime naps and was able to work in an office environment. As I gained confidence with my health, I thought of having another child. Before I could think twice I was expecting twins. All went well and I was blessed with healthy twin boys.
Living with an invisible disability like brain injury puts a veil over my reality. I felt confident that I could manage it all. Newborn twins, part-time study and work (9 – 5, 3 days a week). But my body had different ideas. I began to notice creeping fatigue. I dragged myself out of bed every day, trying to keep going and prove that I was capable/normal.
It was the fatigue that kept pulling me back. I remember an afternoon at the school, picking kids up and joining in the banter of other mums telling stories about how hard their lives were. I never complained to them about my disability, even though I so often felt like saying I had more to manage than they did. I didn’t want anyone to feel sorry for me.
One particular day, I tried to excel. I wanted to make a special dinner for Valentine’s Day for my partner. My body said “no, you’re too tired”, but I ignored that and soldiered on, determined to achieve.
Getting kids up that morning, I felt totally exhausted, wobbly on my feet and slurring my words, just like I had in hospital after the accident. But I had so much to do, so I soldiered on. As it wasn’t a work day, I thought I’d be ok. All I remember now of that day was falling, trying not to fall on my son as I carried him to his cot for his afternoon sleep.
I had a massive grand mal seizure and lay unconscious in the hallway until my 5-year-old daughter came home from school.
She saved my life, running to get a neighbour who called an ambulance and got me to hospital.
That was the end of my chance to drive and to perform paid work. I was now a full-time stay-at-home mum. But there was nothing wrong with my determination and hope! After 20 years of living with this invisible disability I’m proud to be mum to 3 healthy young people.
I am continuing to move forward, this time with better epilepsy drugs keeping seizures at bay. But I am left with an acquired brain injury that causes rotten short-term memory, bad balance and I am easily muddled on tired days.
I have noticed that people treat me differently. Sometimes, people in an unfamiliar coffee shop stare if I happen to lose my balance. They just stare, sometimes too politically correct to say anything. A simple, “Are you ok?” wouldn’t hurt, rather than a flimsy stare!
Despite these inferences from the public, I know from the ongoing support and care that I receive from family, friends and my local community that I am up to the task and if something goes wrong it is understood that I am doing my best.
After all, I am only human!
I think that I am doing ok.
I feel lucky and grateful to be alive.
I see sunshine ahead.
Find out more about Brain Injury Awareness Week here.
