My world was turned upside down when I suffered extensive injuries including brain injury in horrific car accident two decades a go.
A negligent driver sped through a stop sign, causing a car accident that left me with brain injury and a plethora of physical, mental and emotional challenges.
After my accident I had difficulties balancing, walking, eating – actually being able to locate my mouth in my face – choking on food and swallowing problems. I really struggled to define what made a proper human being. I thought that they could do up their own buttons – my uncooperative brain and fingers couldn’t accomplish even this simple task.
Cognition and communication problems added to my bewilderment, and finding ways to cope with constant double vision was, and still is, a challenge.
An educator by training, I had taught at Ivanhoe Girls’ Grammar School for ten years before the accident. Professionally I was devastated that my health and brain injury problems prevented me from returning to full-time teaching.
Perhaps my biggest challenge was the emotional upheaval of passionately wanting to be the ‘old me’ – I had to learn to accept and live with the new me.
I was desperate to return to teaching as I thought I might find the old me in the classroom.
I was fortunate that I had been involved with the Philosophy for Children program, which provided an opportunity to teach in a different way.
Unfortunately I could not follow the texts, so I had to develop a new way to open my students’ minds to ideas. I used objects as symbols, and to my surprise this approach captivated their imaginations and led to wonderful discussions.
For example, wanting students to reflect upon what qualities we consider good and bad, I placed a tin of baked beans on the table and asked them what story had beans in it.
Immediately the students were full of curiosity. Jack and the Beanstalk! Was Jack good or bad? One five-year-old student remarked that Jack was good because he killed the giant. The next student asked was it good to kill bad people? The next child asked how did we know who was good or bad?
My faulty memory also prevented me from remembering my students’ names so after much trial and error I used a ball of red knitting wool to throw to the student who wanted to speak. This student then chose the next person to speak and threw the ball to them. I realised that when the students had the ball of wool in their hands and they were twisting the wool, they expressed their thoughts with greater ease.
Chasing ideas with my students has been a highlight of my life as I believe there is nothing more important than helping children to think for themselves.
I didn’t want anyone to ever feel as lost and bewildered as I did.
Brain injury affects one in 45 people in our community and this is believed to be just the tip of the iceberg. Although discoveries in medicine have meant that more people survive a brain injury, there is no medical cure.
At the time of my accident there was little information about brain injury available. I felt compelled to write Doing Up Buttons and in the book I brought to life my brain injury experience – from being unable to walk, talk, see or think properly, to how I regained my life, found my feet, my thoughts and my confidence.
After Doing Up Buttons was published, I was invited to speak to a wide variety of audiences in Australia and overseas, including leading community organisations, leadership and rehabilitation groups, health professionals, universities, school principals and parents.
People with brain injury need to learn about coping strategies, resilience and optimism. My aim in presentations to people with brain injury is to give hope, inspiration, insight and information to help them tackle their life’s challenges. For other audiences I speak about the importance of thinking and resilience.
Embarking on a PhD with double vision, memory difficulties and pain was a challenge.
I had returned to my Masters of Education study many months after my accident and discovered that the lecturer might well have been speaking Swahili – his words made no sense! But gradually I started to understand snatches of the lectures.
I experienced great difficulty verbally expressing my ideas, but slowly my ideas found a way out through my one typing finger. I could then revisit and edit and re-edit my work. This endeavour stretched my brain and helped me relearn to think and express myself.
Years later, at a conference for disability liaison officers from universities, several attendees suggested that I do a PhD. This appeared to be totally out of the question because of my brain injury-associated problems.
However, I heard that RMIT had a program of PhD by Exegesis [project work], and I heard about phenomenology, and I became excited at the thought of completing a PhD by Exegesis.
I met Dr Paul Ramcharan and was inspired by his knowledge and understanding of the disability experience; he became my supervisor. Later, Dr Josephine Lang became involved from the educational perspective. After four years I was able to complete a traditional PhD.
Brain injury is the worst and best thing that’s happened to me.
I examined the narratives of 36 people with brain injury as they explored negative and positive elements of living with acquired brain injury (ABI), using a metaphor of an “ABI cage”.
This was a powerful way to lead people to gain insight and awareness as they reflected on their experience.
My research demonstrated that brain injury damages more than the brain, body and beliefs – it also damages the person’s hope, honour, trust, safety and security. Participants expressed how they felt lost and trapped, how they were no longer like ‘normal’ people and they were damaged from emotional fallout.
"People with brain injury need to learn about coping strategies, resilience and optimism. My aim in presentations to people with brain injury was to give hope, inspiration, insight and information to help them tackle their life’s challenges."
However, participants in my study also identified factors that had a positive effect on their life and world, such as hope, love, learning to understand ABI and work things out for themselves, and learning to come to the realisation that brain injury is not all bad.
Several people stated that brain injury was both the worst and the best thing that had happened to them in their lives: through their brain injury experience they now appreciate being alive, they are aware of their strengths and weaknesses and they feel wise.
Hope stands for Help Other Possibilities Emerge.
Professionals involved with teaching about ABI, or ABI research and healthcare, often put a two or five-year timeline on recovery from ABI. This rule removes hope. Hope is of prime importance. Many participants in my research had been told they would never walk, drive or return to study; one participant had been told she could never have children.
These people had not believed what they were told and now could walk, drive and study. The participant who had been dashed to learn she could not have children now had two.
Recovery is different to wellbeing, quality of life, or coping, although these terms overlap. Professionals need ways to discuss the ramifications of brain injury and to find a new way to lead people with brain injury to accept their difficulties and things that can contribute to wellbeing or quality of life.
My focus in life is to continue helping people with brain injury understand they can find ways to help themselves, and that they should never, never ever give up hope.