Taylor-Bearman - A Girl Behind Dark Glasses

Published in Great Britain by Hashtag Press 2018

Text Jessica Taylor-Bearman 2018
Cover Illustration Ffion Jones 2018
Cover Design Helen Braid 2018

The moral right of the author has been asserted

All rights reserved. No part of this publication may be reproduced, stored in retrieval system, or transmitted, in any form or by any means without the prior written permission of the publisher, nor be otherwise circulated in any form of binding or cover other than that in which it is published and without a similar condition being imposed on the subsequent purchaser.

A CIP catalogue for this book is available from the British Library.

ISBN 978-1-9998053-6-4

Typeset in Garamond Classic 11.25/14 by Blaze Typesetting

Printed in Great Britain by Clays Ltd, St Ives plc

HASHTAG PRESS BOOKS
Hashtag Press Ltd
Kent, England, United Kingdom
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Me and M.E Same letters separated by a dot

Ones who I am, ones what Ive got

Ones who I used to be, ones what Im not

Oh Im still me, theres just a dot in-between

But its a dot that can stop you from living a dream

Its a dot that separates the M from the E

And while its sat there its hard to be me

The me that I was in healthier days

Before the dot came forcing the parting of the ways

Im nothing as M and empty as E

But side by side again I could be me

That dot has got a lot to explain

How can something so small cause so much pain?

So much devastation, Seems endlessly cruel

Its just one stupid dot after all

Why does it have to be stuck in the middle?

Causing complex symptoms that read like a riddle?

I have to believe that just as it came

The dot will mysteriously vanish again

Every night before sleeping I hope and I pray

That Ill wake up as me without a dot in the way

By Mama Chill

Mama Chill

May my Eagle fly high on the wings of freedom.

With Special Thanks to Elizabeth Ann Giles, for inspiring me throughout her life. Chuckles and Mumsie. Tom and Becky. Pop. Nick. To my Grampy and Grandma. And most importantly, to my better half, Samuel.

This book would not have been possible without the Kickstarter supporters; especially Ruth Ann Harnisch and Amy Gilbert.

My name is Jessica. I am severely unwell and I tell you this story not for recognition, nor for my own pleasure, but to tell a story that needs to be told. This book was made possible only through a diary called Bug that I first started before I became unwell and continued through my illness. I suffer with a disease that you probably know little about. Some will have never heard of it, whilst fellow sufferers will know it all too well.

I have severe Myalgic Encephalomyelitis, commonly shortened to M.E., as it is not the easiest of medical jargons to pronounce. It is a deeply debilitating, chronic disease that you may know of as chronic fatigue syndrome (CFS). To me, the latter name is daft as it sounds like very tired syndrome and that doesnt begin to describe the suffering, not in the slightest! I had never even heard of the condition until 2006 and had absolutely no idea of the symptoms or what it meant. That was the year my life changed forever.

The medical world knows little about M.E., its causes or why some people suffer more severely than others. It is a neurological condition that cunningly creeps up on you without anyone else being particularly aware. It all seemed to happen in a bizarre mixture of speed and slow motion. When I was fourteen, just before my fifteenth birthday to be precise, I became unwell with a flu-like virus and that was where my journey began.

I was living in the protective bubble of childhood. I didnt want to be ill. Who does? I took the typical British approach. After the initial virus was gone, I turned a blind eye to what was left behind. The demands of my day-to-day life started to come with a cost; multiple infections and viruses followed. Even then, I tried to carry on. I just wanted to be a kid. At the time, my philosophy was simpleI dont want to be ill, so I wont be.

Unfortunately, it was completely the wrong approach. Before long, I became housebound, as the M.E. Monster waged war with my body, torturing every cell, charging through my veins. I can still remember the day when I finally asked for help from the medical professionhelp that they lacked the knowledge or understanding to give.

Before the Dot

I always thought of my family as being average. My parents werent well off, but they werent so totally strapped for cash that they couldnt give me, my brother, and my sister opportunities either, and thats all that mattered to them. Mum and Dad worked their socks off; my mum as a nurse practitioner and my dad as a paramedic, with the accompanying shift patterns.

Being from a medically-trained family, there was no expectation of having Christmas or birthdays off work. In fact, more often than not, Christmas was just another working day for my parents. The intense schedules never caused me or my siblings to be unhappy, instead it created an unbreakable bond between us all.

Dad worked eight Christmases in a row. Even though it was hard for a young family to understand why Dad wouldnt be around on Christmas Day, we spent magical holidays at my Gran and Pops (my mums parents).

I remember one Christmas Eve that I spent with Mum and Dad, so it was particularly special. It was from the days of being too young to know that the red lights in the sky came from planes, and I could have sworn I was seeing Father Christmas in his sleigh. This was confirmed by my parents and I had to continue being a good girl to make sure Santa found my stocking that Christmas Eve as we drove to see my grandparents.

My brother Tom and I are best friends. It has always been like that. Before Becky was born, we lived in a small townhouse, where we shared a room. Tom was five years older than me and had a reserved character, dark blond hair, a tall frame and a very chilled-out manner. He was my hero.

We complemented each other perfectly: he was relaxed, I was on the go all the timeI wanted to walk even before I learned to speak. Tom was easy; as long as he could sleep and eat, he was fine. In contrast, I was awake all the time.

Our only similarity was that we were both content. Everything that Tom could do, I wanted to do. As soon as I could talk, I named the beloved bear I took everywhere, Tom Ted. I would rather play with Tom and Tom Ted than with other little ones my own age.

When my parents were asked to use five words to describe me, Dad answered with a wry smile: happy, energetic, thoughtful, intelligent and mischievous. Id had an infectious zest for life since birth. His Jessica Laura Elizabeth Taylor.

When I was four, I found out that I was going to be a big sister and I couldnt have been more excited. I didnt know why I was becoming a big sister, but I could see the bump in Mummys tummy. Every night before bed, I talked to her stomach and told the bump that I loved it and that I hoped I would be able to play with baby as much as I did with Tom.

After what seemed like an eternity, my sister was born. In fact, I remember that I was with my Grandma and Grampy waiting for her to be born. We waited all day, until finally after the eighth phone call of the evening, she was born on the 21st May 1995. I had wanted to name her Lucy after my favourite doll I had lost outside, as a result of trying to make her friends with the wild guinea pigs. This request was only partially successful, and my little sister was registered as Rebecca Lucy Isobel Taylor.