My Life, My Rules: My Style, My Attitude

By Nevonia Moodley

The book is inspired by me.

I suddenly fell ill when, I was 12 years old and discovered that I had a rare genetic disorder that affects me physically at most.

I ran, jumped, danced... grew up like any “normal” kid... like a tom-boy with shorts and a t-shirt climbing trees and full of mischief. But, I loved dressing up and wearing high-heeled shoes and parading around the house. When I was 12 years old, my whole life sort of froze. I was angry, sad and depressed... and the next year was high school for me... and going to high school is a daunting process for any child and it can make or break you.

I focused mainly on my 5 years at high school, growing up. I experienced a lot more than most kids my age and had more challenges and obstacles along the way. I take the reader on a journey through my life and hopefully you will understand my feelings and me better. I survived losing myself on so many levels but I came back stronger, mentally. It built my character and taught me life lessons and skills.

People always ask: “given the opportunity, would I go back and do things differently?”
My response is always “No, what happened to me is what made me into the person I am today and I don’t want to change that!”

I grew up like any child but am now living life as a “disabled” person. I would call myself “physically challenged” that makes more sense to me. No one can truly say they “accept” what has happened to them, and neither can I...

But, I am living “my” life as a quadriplegic!

• Language: English
• Publisher: Nevonia Moodley
• Release date: Feb 18, 2022
• ISBN: 9781005485788

Book preview

MY LIFE, MY RULES – MY STYLE, MY ATTITUDE

MY LIFE, MY RULES – MY STYLE, MY ATTITUDE

NEVONIA MOODLEY

Copyright © 2022 Nevonia Moodley

First edition 2022

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or any information storage or retrieval system without permission from the copyright holder.

The Author has made every effort to trace and acknowledge sources/resources/individuals. In the event that any images/information have been incorrectly attributed or credited, the Author will be pleased to rectify these omissions at the earliest opportunity.

NEVONIA MOODLEY

[e-mail]

ABOUT THE AUTHOR

I am Nevonia Moodley. I am 31 years of age and I am a first time author.

I have lived and seen life from both, the perspective of an able-bodied person and a disabled person. Which means I have +/- 15 years of experience so I do believe I am well in my right to speak on behalf of myself and others.

With determination and perseverance I successfully completed my matric… then, went on to university to complete my National Higher Certificate: Accountancy, National Diploma: Internal Auditing, and a course in Basic Counselling. I am an overall people person and my knowledge and understanding of physical disability and an individual’s mental and emotional well-being, has definitely grown.

I worked for one of the biggest names in the disability sector, Mr Ari Seirlis, who at the time, was the CEO of the Quadriplegic Association of South Africa (QASA). He was my teacher and mentor. He always offered his guidance and direction, and called me The Disability Activist… until this day we still remain good friends.

There is a need for accommodation for quadriplegic’s and paraplegic’s, here in South Africa… which I have experienced, personally.

Someday, I would like to open up a centre that can accommodate quadriplegic’s and paraplegics, on a permanent basis. Providing a safe and care free environment where they can live independently and with dignity… free from judgement and bias.

Please do check out my Facebook page and Instagram, www.facebook.com/nivnurvz22 and www.instagtam.com/mlmr_msma - to learn more and connect with me!

CHAPTER ONE

… So my life didn’t turn out exactly the way I wanted, but it’s not the end of the world!, right?

It all started in my final year of primary school. I just turned 12 on the 22nd of January. Probably about 1 month into the school year and I got the flu, real bad. I couldn’t stand, talk or even walk, and ended up staying away from school. I had always been a straight A student, who had never missed a day of school, so this was a first for me. A week had passed, I hated the idea of being in bed so sick and helpless and lethargic.

One morning, I got up the courage, stumbled out of bed, showered and got dressed. Holding on to my mum, for support and balance, I walked up the road to the school gates.

As I entered the school, I was welcomed by all my friends with these huge smiles on their faces and overflowing with joy and excitement. But, upon seeing my condition the principal sent me home, immediately, and said only when I fully recover to return to school, there was no rush.

I returned home and it was straight to bed. But, during the course of the following week, I started to feel better. The following Monday I returned to school. The only thing on my mind was I had been away from school for two weeks, and all the work I had missed out on, and would now have to catch up!

It turned out the school nurses were going to be at school the next day, and I was their next victim.

First, I was too skinny for my age.

Then, I walked funny.

And, I’m thinking, HELLO, I just had the flu, to me this was all normal though.

I had always been skinny – no matter how much or what I ate, I still remained skinny – I had a fast metabolism, so I took no notice of what they implied.

They instructed me to go to the local hospital ASAP, which was R. K. Khan Hospital for me. Was it really that serious, who knew and quite frankly I didn’t care!

All that mattered to me, were my grades.

School holidays were coming up at the end of March, so my dad decided to take me to the hospital.

I spent the next two weeks of my Easter Vacation confined to a hospital bed. They put both the sides up, which made it look like a baby’s crib – the nurses did this because they thought I moved a lot and I might hurt myself. Basically I was kept like a prisoner and I was scared because I didn’t even know anyone there – the first two or three days I cried a lot, wasn’t eatng, neither would I let anyone touch me. Finally, I had all these stranger’s (doctor’s), poking me with needles (drawing blood), and sending me for these different scans and tests.

For a child, this is utterly confusing, upsetting and very frustrating.

Being the curious child that I am, I had a zillion questions like what and why they were doing all this, but there were no grown-ups around to give me any answers. About a week had passed and the amount of visitors was overwhelming, even long lost relatives which was surprising!

I was terrified and downright angry, I wish I had a better way to express these feelings, but all I could do was cry.

Lastly, I had a lumbar puncture done – that is sticking a needle into the lower part of your spinal cord and drawing out some of the fluid – that was sent for testing. I honestly felt when this was all done, I’d be dead!

They kept me in hospital, for observation before discharging me.

I was ecstatic to finally be going home, but to my dismay I ended up getting even sicker. Everything that went into my mouth, came out, one way or the other, even a glass of water wouldn’t stay in me.

During the course of the next week, I returned to hospital, much worse than before. I was put on a drip to revive me and more blood work was done. So, I went into hospital well, healthy and completely alive but, came out almost dead!

It was very hard for my brother and parents’, grandparents’, aunties, uncles, cousins, friend’s and on-looker’s, to see my helpless, little body lying there in that bed, I won’t argue with that. I can’t even begin to imagine what or how they felt, but all they did was watch and judge. I’m the one that experienced and felt all the pain and anguish. And, I’m supposed to understand and sympathise with everyone else, but, what about me – I was young, the rest of them were bigger and older and ugly enough to look after themselves!

My parents were scared and afraid of losing me, that they ended up promising me the world – material things like a new playstation, dolls, clothes, etc. – which kid wouldn’t want all that, it was like Christmas came early that year. In the end it was all empty promises, that left me upset and disappointed.

Financially it wasn’t possible, now that I’m older I can understand what and why they did, what they did!

But, to me it is wrong to lie to a child and then bribe them for their attention or affection. Be it your own or someone else’s, just for your own personal gain. Children are born sweet, loving and innocent, and at a young age, are very impressionable and pick up on the behaviour patterns of their parent’s and peers, much quicker. It is so not cool to take away a child’s innocence with lies and deceit.

Another week at home, recuperating and, then it was back to school, after a holiday from hell. I was really happy in a long time, bursting with joy, full of energy and enthusiasm, just waiting to tackle the new term.

This was the year we got to choose which high school we wanted to go to the following year. I applied to Southlands Sscondary School (SSS) because that’s were my best friend was going, and I loved the girls uniform.

It wasn’t the ordinary plain white dress that most of the school’s in our district had.

It was a grey box pleeted skirt that was supposed to be knee length and a white shirt, with the school tie or monogram, the rest was up to you.

As fate would have it, my dad and his siblings’ also went there. I was the starter of the next generation to go there.

My brother went to Protea Secondary School. He had his own reasons which I didn’t understand and don’t even want to try to!

The first week in May, I had to go back to the hospital to get my test results.

I had to wake up at like 4 a.m. just to shower and get dressed. By 5 a.m. we had to be out the house. We had to be at the hospital early enough just to get my card out.

At the time, my dad didn’t have a car, and buses and taxis didn’t operate so early in the morning. So, my dad asked a friend to drop us off at the hospital, who was kind enough to do us that favour so early in the morning.

Upon arriving to see the doctor that had been sending me for all those scans and tests, just to find out, he was just as puzzled and clueless as I was!

My anger and frustration escalated.

He, then, decided to transfer me to Wenthworth Hospital, where they would do more blood work and run more tests. That’s when the SHIT GOT REAL!

I spent my Winter Vacationat another hospital which smelt like honeysuckle. To this day I hate the smell, with a passion!

I even had a new doctor. She seemed more knowledgeable, experienced and capable to handle my case. I really admired her work ethic and she had this incredible confidence, in the way she walked, talked and portrayed herself. She treated me like a real person and spoke to me, directly. It was like I was the only one in the room, and I really appreciated that.

She explained what and when they were going to do things, and why. That calmed me down and got me to relax a bit. I felt relieved knowing that I was in capable and reliable hands, which was a good feeling.

She had blood tests done, sent me for X-rays, an ECG, a CT and a MRI scan.

All those test results were then sent to Cape Town for genetic testing. It would then be further analysed, documented and a proper diagnosis rendered.

That was just a week in hospital then I returned home. I was more at ease this time, than my previous stay in hospital.

I went home and it was like nothing had happened, I went back to just being me!

When school re-opened for the third term, I was full of excitement to see my friends whom I missed dearly. It felt like ages since I last saw them, we had a lot to catch up on!

I was a prefect that year, I enjoyed the responsibility tremendously and I definitely had the attitude to match…

It was daunting having to think about all the work that I had missed out on, extremely nerve-wrecking.

Would I be able to catch up with the rest of the class?

What if my grades dropped?

And, I wouldn’t be accepted into SSS?

My facial expression dropped.

I always said, Aim high and reach for the stars, so I took on the challenge. If not for the strong words of wisdom, support and encouragement from friends and peers, I wouldn’t have made it. One of my friends’ really stood out for me though, she pushed me to my limits and motivated me along the way.

She would lend me her books to take home, to complete notes. During breaks or free periods, she would explain and teach me in simpler words, certain definitions and concepts that I didn’t fully understand.

In no time, I was back on top of things!

Yes, I was the Queen Bee, looks and glamour goes along with it, but I didn’t let that go to my head. I was also a self proclaimed bookworm, very much into studying and learning, which no one took any notice off.

So, I took the help, guidance and direction provided to me very well!

To my amazement I topped the standard in the exams, I didn’t even think it was possible!

I really had gems for friends’ and all the credit goes to them.

And, it was those results’ that would determine if I got accepted to the high school of my choice!

I got transferred to another hospital that just opened, Nkosi Albert Luthuli Hospital. My doctor had been transferred there, so it seemed fitting.

During the September holidays, I was summoned to that hospital, to finally find out what all the fuss was about.

Another doctor was transferred there as well, and she lived just down the road from us. My parents’ knew her family well, I just knew her name - Chantelle. I was okay with that – I didn’t feel like I needed to know more!

D Day was approaching, the day everything could and would change.

Obviously, I was nervous and deep down I was scared as hell but I put on a brave face!

However, the following morning, I woke up early, showered and got dressed. We weren’t sure how things worked at the new hospital. With technology helping make things more sophisticated, everything was computerized so things moved along more smoothly.

Both my parents came along as we were all curious to find out what this all meant for me.

At 6:30 a.m., we travelled with Chantelle to the hospital. The hospital had just opened their doors to the general public so there weren’t a lot of patients yet. But they did have a long waiting list, because, it was one of the best hospitals in the country. With the best facilities, clean and neat surroundings and latest technology, everything was top notch. Most people would give a tooth and a nail just to get in.

Chantelle helped us out, she pulled some strings and got my card out earlier. Which meant I didn’t have to sit and wait in the queue. I could go straight to see my doctor at the Neurology Department. I still had to sit in the queue but this wasn’t as bad, at least now I didn’t have a million eyes peering at me. It turned out, Chantelle was also stationed in the Neurology Department.

Now I was curious as to who she really was. Well, I knew she was a doctor because she wore a white coat. But, what kind of doctor? Now that I didn’t know and I didn’t have the courage to ask.

At 10 a.m. my fate would be revealed. The doctor sat me and my parents down and finally explained what was going on. She got straight to the point and didn’t second guess herself. She spoke directly and openly especially to me, and was kind of oblivious to my parents who were in the room. This is what she said and explained in detail:-

"You have a rare genetic disorder called Fredrich’s Attaxia. It affects the nervous system, muscles, bones and joints. It is a progressive condition which means overtime your condition will deteriorate and you will eventually become bedridden. It is mostly rare here in South Africa, but doctors’ in America are well aware of it and have yet to find a cure."

She then asked if I had any questions. DAMN right I did, at that moment in time, I needed to breathe.

Why did it take so long to find out what was wrong with me?

You were born with this disorder. It took time to develop in your body, since your birth, before you started showing signs.

How is or was it caused?

She illustrated and said-: your parents are first cousins. They have 56 chromosomes each. You get half from your mother and half from your father, to make-up your DNA. You got an abnormal chromosome from one of them that carried the disorder.

The word abnormal stuck out for me, hence, my next question;

I’m not normal?

No, you are normal. There is something wrong with your DNA make-up that makes you different.

How was she able to remain so