Introducing ME [part2]

Candy my Cabbage Patch Kid
I tattooed her not long after.
  Children and marker pens do not mix.

*Read part 1 first - it's below this. Thanks.*

I find it very upsetting when I think back to how cruel some kids were.  A few solid friends stuck by me through primary and intermediate but to most, Friedreichs Ataxia made me ‘different’ and ‘unfamiliar’.  Kids would say spiteful things and tease.  I’d cry, get very upset, and quite often took refuge in the principal’s office.

I went home from primary school most days in tears.  Unfortunately, that reaction was what some of those nasty kids wanted and they’d call me names like ‘shaky’ or ‘handicap’ and tease me more.  When I overheard some children at school talking about things they had overheard from their parents, ‘Melinda won’t be able to move’ and ‘Melinda is going to die’, I told them they were silly and ran away and cried.  I knew there was some truth in what they were saying but not to what extent they were telling the truth.  I didn’t want to admit they could be accurate.  Finding out about my diagnosis so I could fully comprehend it was a must.

1st runner up Miss Hawkes' Bay
 & Miss Personality -
MELINDA BENNETT

To defeat the enemy, first you must know the enemy.  I read the books dad had been given thoroughly.   My fears were confirmed but even so I felt relieved: I understood what was happening to me – there’s no certain timeframe or certainty what will happen or when or how bad for FA.  . 

Even tho I now could argue back the facts of why I had slurred speech or why my body shook, the ridicule and bullying remained.   I still hear the taunts , one boy in particular  still haunts me years later.  He’d call me names and mimic my shaking body to his friends, who like their cowardly leader would laugh.  But instead  of walking away I’d run my mouth which would sadly  give him more ammunition to  fire at me.  I now realise I could & should have ignored him, or spoke to an older person - never would of I admitted it then but older people are sometimes wiser!
      Luckily by high school my peers and I were much more mature and understanding.

My attitude has remained the same basically I believe there’s 2 choices in life - (1) give up or (2) NEVER give up.  I am scared of what’s ahead but I live for today.  No one knows where their journey will take them, what paths they will go down or when the journey will end.  I hope I wake up tomorrow and a cure for FA is found.  Miracles DO happen everyday so having faith in that gives me strength and power.  No matter what happens in my life I will face it and fight those challenges when they crop up.  Everyday is a bonus for which  I am so very grateful to have.  Tomorrow is a gift so please enjoy it for yourself and for your loved ones  NEVER GIVE UP!. 

 xoxo



Marshall Mathers aka Eminem

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.