Introducing ME [pt1]

     I had  to take down a few earlier posts as I had entered a competition for my autobiography to be published.  One of the terms and conditions was the writing wasn't published elsewhere.  To play by the rules I took down those posts, which were abstracts from my book.  My submission wasn't successful, which sucks because I want to share my story and hopefully motivate others to enjoy life and never give up.  ... I don't need to be published in a book to share my stories life experiences so I hope someone reads my blogs and get something out of them - whether it be a giggle, a piece of advice, a feeling they're not alone or to never give up!  So here we go...


Me in my standing hoist which I use to exercise 3x weekly.
... working on my guns here - 1kg weight!!!
 

It was  1980 when I, Melinda  Bennett, entered the world, a happy healthy baby girl. In those early years life seemed uncomplicated and straightforward.  I was just a ‘regular’ kid from a middleclass family and dreams were just pictures of the reality waiting for me.  

In 1990 my world forever changed.  My mum and her new partner had a darling little girl. And my dad got me my BFF, a gorgeous black spoodle puppy named Bo-Bo.  But with the good times also comes the not-so-good times.  Mum and my sister moved to Australia.  And something was seriously wrong with my health too.

I was very shaky and uncoordinated,  my speech was slurred,  I often spent days in bed, even to tired to chew, swallow or move.  Mum had noticed from an earlier age that something wasn’t right with my coordination so she had taken me to a few doctors telling them her observations.  They all said I was ‘just a clumsy kid’ and I would ‘grow out of it’.  Then dads friend  -an ex-nurse told dad specific tests to be done,  Dad told my GP what he needed done. Straight away, he made appropriate referrals to the corresponding specialist doctors.

Within a week I was scheduled to undergo a CT scan.  The nurse operating the machine told me what was going to happen.  I just had to lie perfectly still as the bed moved through a hole which would take pictures of the inside of my body.  I started having flashbacks of an old movie I saw, where a young girl around similar age to me went through a similar machine and later died.  I totally freaked out thinking it would happen to me.  Dad and the nurse tried to console me; dad even lay on the bed to prove it was safe.  Half an hour later a deal was made that if I went through the machine we’d have McDonalds for dinner.

Of the resulting tests, the most horrific one involved electricity.  It was to test my nerve reaction.  I lay on the bed and I remember a gag being placed in my mouth.  ‘This is so you don’t bite your tongue.’  Pads were applied to points on my legs and arms; wires ran from each pad to a machine that sat on a nearby table.  The look of it scared me and I tried to raise my hand to release the gag and call the test off.  I tried in vain to sit up but restraints on my wrists and ankles held me down.Electric shocks bolted through me, and the voltage slowly increased until the pain became so unbearable I tried to scream out.  Dad saw tears flowing down my face and told the technicians to ‘stop it right now.’  The machine was shut off and I was released, shaking and crying so hysterically that a nurse had to help me dress.  All I wanted to do was be in my own safe bedroom.  Dad had to carry me to the car afterward and Bo-Bo, my loyal dog cuddled me as we drove home.

Late one afternoon, Dad got a call from the doctor.  He told dad I had a rare neurological disease called Friedreichs Ataxia.  Dad hadn’t heard of it and the doctor admitted the same and that he had looked in a textbook so he had some information to share.  He said life expectancy was limited to early teenage years, which he concluded were between 13 and 16 years of age.   A form of Muscular Dystrophy, Friedreich’s Ataxia is a relatively rare inherited disease of the nervous system characterized by gradual loss of coordination, which leads to tremors, an unsteady gait and slurred speech.  To casual observers, a person with Friedreich’s Ataxia may seem intoxicated.  Heart complications are common but vary in severity.

When he finished reading he turned to dad and said, ‘I am sorry Steve but there is no cure for FA.  It is a degenerative disease, so it will only get worse before… .’  His voice trailed off but dad knew in his mind the finishing unspoken words: ‘before she dies.’

My adult cousin wrote to a magazine and asked anyone with information about Friedreich’s Ataxia to respond.   She received a few news articles and letters  which she gave to Dad.  He felt sad and hopeless as he read of the cramps I would experience as my muscles deteriorated and the complications that could arise from my thick and floppy heart.  However, he also noted people were leading longer lives.   The disease could not be treated as a whole entity, but some resulting pathologies such as diabetes, cardiomyopathy and scoliosis, could often be monitored and treated with medications, and physiotherapy.  Life expectancy could now be extended to 35-55years.  He realised the hard fact that no matter how much he chose to deny it, his baby girl had Friedreich’s Ataxia.