MY LIFE WITH FRIEDREICH’S ATAXIA – SOME AUTOBIOGRAPHICAL REFLECTIONS

I can still remember some events quite well of my early life when I was seven. For example, let me tell you about trying to ride a bicycle. It took me a while and took me some time before I got to master it. It was no easy feat. Also, at 7 years old I entered a new primary school and there in the playground was a balance beam. This gave me an early lesson in the difficulties I would confront later when Friedreich’s Ataxia took hold. But I’ve always been very determined to live life to its fullest.

I have always been pragmatic, “trying things” and working out how to relate, and so I grew up to function with a lot of “street smarts”, techniques of survival and relating. With my determination I made it to inter-school athletics championship. As might be expected, I performed horrendously. I had no idea of what Friedreich’s Ataxia and its medical implications meant for me.

Also, around 11 years old, I was fixated with Aussie Rules football and attended every week with my father in the hope I could join the Auskick Little League. But by this stage I started to realize I could not kick the football with enough power, this, for many reasons, was very shattering to me; firstly, both my father and I had our hearts set on me joining the Little League but at this point I never could join in, and I guess it was because of the limitations on my body emerging with this Friedreich’s Ataxia. I was not medically diagnosed until I was 14, so I very much lived a life in limbo unaware of why my body – my legs and my balance – was as it was.

MY LIFE AFTER DIAGNOSES

Even today, I cannot fully grasp what has been going on in my life. it’s all a bit of a mystery. Many of my friends, family and teachers were very sympathetic, we must remember this was the 1970s, where there was no such thing as a general social empathy for those with disability. But I guess I have to admit that this condition helped to drive me into slight craziness at Mazenod College. I have to confess I did some terrible things of which I do not now wish to recount.

At that time in the middle of my 14^th year, I started physiotherapy at St. Vincent’s Hospital in Carlton, and this allowed me to spend a day away from school, one day a week after physio, exploring Melbourne’s fashion scene, whilst also being able to explore different cuisines.

With this weekly adventure, I found myself gaining appreciation for the opposite sex. And this helped drive my departure from Mazenod College (a boys’ school) to the mixed Springvale High School. Life was very different for me then. I never did any serious study at school, and I ended up in a lot of trouble with the school principal. My departure was also aided by the fact that we were moving from Springvale to the countryside just passed Dandenong.

However, today in retrospect, I really wished I had paid more attention to my studies. If I had done so, this may have allowed me to view things differently and to feel and appreciate life and its existence in a different, more positive, way. So, I ended up leaving school at 16 years of age and was supposed to be giving concentrated attention to the health aspect of my life with Friedreich’s Ataxia. But this was not to me. There were many reasons, I suppose, but I was drifting and not mature in my attitudes. At that time, the late 1970s, there was no such thing as an internet and I was definitely not academically equipped to do anything so I was left in this limbo – a most frustrating position. Soon after turning 17, I received the devastating news that my mother had been diagnosed with fatal stomach cancer.

MY LIFE AND BAD NEWS

Keep in mind that I was preoccupied by the devastating effects of Friedreich’s Ataxia. This news about my mother I tended to put into the “too hard basket”. Looking back now, I cannot believe how utterly self-centered I had become. But it was so hard for me to come to grips with both my mother’s fatal cancer and the devastating effects of Friedreich Ataxia. Her first operation was in 1979 at Springvale Hospital. Recalling this today, brings back much sadness but also, let me say, some truly happy occasions.

At that stage in my life, I found it necessary to try and hold unto anything that could provide me with a form of enjoyment. My mother’s cancer was very sad and painful, she withstood a lot of pain. In her last 3 months she spent most of her time in the Peter MacCallum hospital. Eventually, the cancer wrapped around her heart and strangled it. She definitely wanted to live; it must have been so hard for her dying six days before my 18^th birthday. A momentous lady who has given me her determination for life.

Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer, my gratitude also extends to my phenomenal team of academic support workers. Firstly, team leader whose brilliance and courteous behavior has been a surmountable addition to my work, and additionally taking on the role as a ghost writer as well, Christina Irugalbandara whose work means so much to me. Daniella De Bruin whose brilliant and caring nature means so much to me. Also, Ikemi Ivara whose ability to command and control the situation with kindness. Lastly but definitely not least, Mercy Ndegwa who’s continually teaching me how to be a better person.