My FSH Journey

 

Born in the middle of last century my life was one big adventure rolling endlessly from morning into night. A bag of skin and sinew, always a bit slower, a little weaker and believing my peers considered me less intelligent, made me determined to succeed.

There would be no question as to my career path, I wanted to join the family motor business and become a racing driver. Well, a boy could dream. My heroes were men like, Lex Davidson, Jack Brabham, or NASA astronauts.

Never questioning my strength, I found it hard to understand why everyone around me could run further, swim faster and whose hand/eye coordination seemed like it was God given. In essence I considered myself a dork and, if I wanted to get to the Grand Prix circuits in Europe had better be a bloody good mechanic.

Back then, I never understood about the effect girls would play in my post-pubescence. One kiss from a blonde bombshell at a netball game on a steamy, starlit, summer’s night knocked my boyhood ambitions for six.

The girl, now long gone, woke me to a different set of priorities and for the next thirty-five years I won and lost at business, never having enough time to question my health, or why my stamina failed me when others worked on.

My business world was crumbling during the recession we had to have and, I felt as if I had been building sandcastles before an incoming tide. I couldn’t make anything last. However, determination and perspiration are strong allies and our family business held ground until a buyer could be found.

Moving to Melbourne, I worked in a number of sales positions, which took me across Australia and overseas. In my sixties and considered a fossil by HR folk, I took a job as a parts picker at AGCO, a company selling Massey Ferguson tractors. Considering myself unfit, I didn’t take a lot of notice of the aches and pains, but my right shoulder began drooping even more and occasional numbness travelling to my fingers worried me.

So began a never-ending roster of specialists who, while they thought they could relieve my pain, never offered confidence enough to let them operate. A referral to rheumatologist Dr. Wendy Stevens led to a biopsy and an overnight stay for wine and bickies in St Vincent’s. Luckily, before going to surgery, she thought a second opinion might offer a more accurate diagnosis.

Introducing herself as Dr. Katrina Reardon bustled in. ‘Now look straight ahead and purse your lips,’ she said. ‘Hmm, now whistle?’

Doing my best to imitate a botoxed catfish, a breathless wheeze escaping my pucker.

‘As I thought,’ she said, while casting a knowing eye over my Mr. Men like physique, ‘you can’t pucker your lips.’

‘I’ve had no complaints to date,’ I replied.

My smartarsed comment withered, dying the death it deserved, Katrina asked me to remove my shirt and as I responded to her diagnosis commands, she checked my drooping right shoulder and soft froglike midriff.

Dr. Reardon had been with me only a matter of minutes before offering her suspected diagnosis, FSHD. Recommending the biopsy be sent for genetic testing to confirm her verdict, Katrina explained how my life could change over the next few years and my need to give up working as a furniture delivery man.

 

At home my wife Ruth and I began sorting out the ramifications of this change to our lives. ‘What are you going to do?’ she asked.

‘Might write a book,’ I said

‘But you don’t read,’ she laughed.

She was right. I didn’t read novels, but being in sales I could tell stories, I just needed to make a yarn last.

Fast forward two years and we were sitting among writers from across Australia at the 2103 National Literary Awards where my debut novel KUNDELA received a Commended.

Since that night Voss, The Price of Innocence and Gillespie’s Gold have also been published. With a growing list of novels, biographies and self-help stories gathering dust on my hard drive while I search for a publisher, I continue to write and learn my craft.

Who would have thought this no longer skinny kid from Orroroo in South Australia, could find his books in many libraries around the country? Not me.

Terry