Cheryl Koenig

Try to imagine what it must be like for someone going about their normal life to suddenly open their eyes after being in a coma for weeks or even months! 

You can’t speak, you can’t move, you don’t know where you are, how you got here, and sometimes not even who you are. You are trapped inside a battered and broken body, and can’t respond to your loved one’s pleas or doctor’s questions. The thought is frightening isn’t it? But in reality, this is the plight for tens of thousands of men, women and children across this country every year who suffer an Acquired Brain Injury (ABI) from incidents such as road accidents, stroke, alcohol or drug-related cell damage, hypoxic episodes such as near drowning, or cardiac arrest. 

Brain injury has a low profile, and could be said to be the most hidden of all disabilities. Is it the social stigma attached? Or just a lack of understanding? On top of the more obvious physical and cognitive challenges, one of the most frustrating aspects of ABI is that it can leave you with little social contact, support, activity – all the things that make life worthwhile! This is why we need to dramatically increase community awareness! As a people that cares about those less fortunate, we desperately need to optimise the opportunities for social and economic inclusion, and develop acceptance and understanding of the valuable contribution people with an ABI can still make in our society, if given the chance. 

Recovery from an ABI is not so different from Olympic athletes training six hours a day, and working through daily pain, family sacrifice and financial strain for years on end. But people with an ABI are not so fortunate in receiving the support an Olympic athlete gets. Evidence now suggests that recovery can take place five years or more out from an accident or incident, but this requires intensive rehabilitation, a self-drive like no other, and most of all, family and community support. How do I know this? My son is a walking, talking message of what persistence and sheer determination can achieve. His story of strength and courage to recover after a horrific accident has been described by many as truly inspirational. 

At 12 years of age, Jonathan was a high achiever at school, sport, and musically gifted with the piano, guitar and clarinet. Hit by a car as he crossed the road not far from his home, he was given very little chance of survival. When he did miraculously pull through, doctors predicted that due to his extremely severe traumatic brain injury he would most likely never walk, talk or even eat again. Paper Cranes tells the story of Jonathan’s valour in the face of adversity and our family’s relentless drive to help him defy these ominous predictions. The narrative, as told by myself, his mother, outlines an arduous and desperate search for knowledge in the area of recovery from traumatic brain injury. It describes in detail what enabled Jonathan to achieve some amazing results, such as his return to mainstream school to complete his Higher School Certificate with his peers; followed by passing a TAFE course and obtaining his Retail Certificate II. Now, 14 years since his horrific accident, he is currently learning to drive; he can not only walk well, but can run; snow ski; swim laps; play tennis and astound many with his poignant piano skills. All this as well as working five days a week in four part-time jobs.  

Similar to people with this often hidden disability that we are so reluctant to publicly talk about, carers of people who have sustained an ABI are also one of the most invisible, vulnerable and undervalued sectors of society. As a carer myself, I can personally relate to the constant demands of caring and the many changes in family life following an ABI. The role of a carer is, in my opinion, the most important job in the world. There is nothing more important than enhancing the health and happiness of someone you love. 

 The message that shines through our story is hope – the book was aptly named Paper Cranes as over 1000 paper cranes were made and sent into the hospital from his classmates. It demonstrates that with the omnipotent force of persistence, determination, family love and community support, any challenge can be faced and overcome. Science has its important role to play, but as this story demonstrates, human development cannot always be accurately determined by science, nor can potential be predicted, or spirit measured. 

The decision to go public with our story was not an easy one. It meant exposing our very private lives, everyday struggles and emotions. But the one thing that drove me to write about our journey was the hope that it would inspire and motivate others, in all walks of life. And to date, the overwhelming positive feedback I have received has made that decision one of the best decisions of my life! The process of creating meaning from suffering through artistic expression in my writing has also had significant personal benefits. My writing ultimately guided me to a special place of understanding and unconditional acceptance of the person my son has now become, and enabled me to relinquish my nostalgic attachment to the ‘perfect’ life we once shared as a family. It is precisely this understanding and acceptance that I want to share with the world – I want to change the existing stereotypes, break down the barriers that currently exist, and create more meaning and purpose for this underestimated group of society. 

Currently I volunteer much of my free time to improve government policy and services in the area of brain injury, and have even presented a paper on ‘Family and Carer Issues’ at an International Neuropsychological Conference on Brain Injury in Brazil. Mine was the only paper accepted by this symposium from carers around the world! This personal milestone for me as a proactive carer was celebrated upon my return with a cocktail reception hosted by the then NSW Minister for Ageing and Disability, Kristina Keneally. 

 My message is a simple one; Never underestimate your potential to beat the odds – it’s not important where you finish; but it is important that you try!