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Troubador Publishing Ltd - L Griggs Vicki

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61 pages

English

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Meet Vicki. Diagnosed with a rare eye condition aged four, she embarked on a rollercoaster journey of life with a disability.Vis-Ability introduces readers to Vicki in her early years. Following her diagnosis, readers witness her heartbreaking decision to have a prosthetic eye fitted at the tender age of thirteen. As her story continues, Vicki faces further problems with her remaining eye, dealing with chronic pain and a rare genetic eye disease.Describing the difficulties that she encountered at school and as she entered adulthood, Vis-Ability strives to raise awareness of vision impairment. The book contains advice on how to deal with a visual disability, as well as the variety of options on offer to those who are visually impaired. It is a story of positivity in the face of adversity and making the most of every opportunity.

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Publié par	Troubador Publishing Ltd
Date de parution	28 février 2020
Nombre de lectures	0
EAN13	9781838597252
Langue	English
Poids de l'ouvrage	3 Mo

Informations légales : prix de location à la page 0,0250€. Cette information est donnée uniquement à titre indicatif conformément à la législation en vigueur.

Extrait

Copyright © 2020 Vicki L Griggs

The moral right of the author has been asserted.

Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms of licences issued by the Copyright Licensing Agency. Enquiries concerning reproduction outside those terms should be sent to the publishers.

Matador
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Tel: 0116 279 2299
Email: books@troubador.co.uk
Web: www.troubador.co.uk/matador
Twitter: @matadorbooks

ISBN 978 1838597 252

British Library Cataloguing in Publication Data.
A catalogue record for this book is available from the British Library.

Matador is an imprint of Troubador Publishing Ltd
I dedicate this book to my mum.

Thanks, Mum, for being my rock in life, for being my voice, for always having faith in me and for all your help in getting me where I want to be.
We have been through a lot together.
Luv u loads, Muma xxxx

In loving memory of
my lovely grandparents,

Grandma and Grandad Griggs

and

Grandma and Grandad Seeley

and

my great aunty Edna.

You are all missed every day xxxx
Contents
About Me
What Is Vision Impairment and FEVR?
The Early Years and My Prosthetic Eye
The Education System
Bullying
How I Got to Where I Am Now
Where I Am Now
Things That I Have Found Difficult
Things I Have Found Useful
Benefits That Help
The Importance of Eye Checks
Experiences Using a Symbol Cane
Guide Dogs
Support Group
Coping Strategies
Good Things Happen from the Bad
My Inspirations
Special Friends
Moorfields Eye Hospital
Epilogue
A Note from Mum
My Message to You

Acknowledgements
Useful Resources
References
About Me
I live in a lovely little village in Hertfordshire with my mum and dad along with our furry and feathered family: Bertie and Jessie (our two dogs), and Sunny (my baby Senegal parrot). Bertie is a Yorkshire Terrier and although he is a small dog, he has loads of energy, so loves long walks. Jessie is our manic but lovely Labrador x collie, who enjoys making you hold her bone for her to chew on! Sunny is like a little monkey acrobat and delights in showing off (especially when Mum is eating grapes and he wants one!). I also have an older brother, Wayne, who lives a five-minute car ride away from us.
In my spare time, I love spending time with my family and pets, playing table tennis, dancing, going to the theatre, reading and doing anything to do with Potter.
The aim of this book is not only to raise awareness of vision impairment, but also to reach out to those who have a vision impairment.
This is my story about my own experiences of having a vision impairment and will give you factual information on this subject too. If this book helps just one person, then I have achieved my goal.
Hope you find it useful!
What Is Vision Impairment and FEVR?
When Things Get Tough
“Things are going smoothly,
And life is great,
Then something happens,
Turns your life upside down,
Thrown in at the deep end,
Not knowing what is happening,
Just living each day as it comes.
Life is like a rollercoaster,
With so many ups and downs along the way,
You’re worried and scared and angry.

With all these emotions running through you,
You don’t know just what to do,
Putting on a brave face,
To just carry on.
Being brave, strong and positive,
To just get through it,
Then you fall down,
Hit a brick wall,
Feel you’re being weak,
Letting people down,
’Cause all you wanna do is,
Hide, give up, let the darkness swallow you up.
You somehow find the strength within you,
To pull yourself back up,
Brush yourself down.
Being brave, strong and positive,
Is how you get through it,
Always be grateful for the things you’ve got,
Family, friends, people who support you,
You have no idea when things might change.
When things get tough,
Think to yourself,
I can get through this.”

By Vicki Griggs
Vision impairment is a visual disability where a person has any sort of vision loss that cannot be corrected to a normal level by using glasses or contact lenses, etc.

Some people can only see centrally (tunnel vision), which can be caused by damage to the optic nerve or retina at the back of the eye. Others can only see peripherally, which means they cannot see centrally, but around the outside of things. This is usually found in people that have age-related wet or dry macular degeneration but can also affect younger people who may have an eye disease or condition that affects the retina.
Some people can only see with blurry or misty vision. This can be caused by having a cataract or being short-sighted.

I am short-sighted and only have vision in one eye. Being short-sighted means that I can see things close up but distant objects appear blurred or fuzzy. When I am out and about, I wear glasses to help, but even with glasses my distance vision is still blurry.
FEVR
All my life my parents have called it the ‘Vicki Griggs Syndrome’, but now it is actually nice to know exactly what it is, to be able to put a name to it and to know what the disease might entail.

There are many types of eye diseases and conditions. My eye condition is very rare; it is called FEVR (familial exudative vitreoretinopathy), which, in a roundabout way, means I have a genetic eye disease involving the blood vessels and retina at the back of the eye. What’s strange is that none of my family have any trace of it. As a disease, it cannot be treated, but the symptoms can be.

Symptoms of FEVR are:
» Retinal detachment – loss of vision (although if caught early enough, some vision can be saved).
» Flashes of light and floaters.
» Glaucoma – high pressure in the eye (causing pain), can cause sight loss if not treated.
» Vitreous detachment (also known as posterior vitreous detachment or PVD). The jelly part of the eye comes away from the retinal wall and this can cause floaters and flashing lights.
» Abnormal blood vessels – these can cause fluid leakage and bleeding into the eye.

Sometimes I feel really angry and resentful, as I am the only member of my family who has this disease and would like to know why I am the odd one out.
The Early Years and My Prosthetic Eye
I was born three weeks premature. Within hours of being born I gave my mum a scare; she was trying to feed me when I turned blue. I was rushed off to special care, where I stayed for ten days.

I was a rather difficult baby. I didn’t sleep through the night until I was eighteen months old. Mum would pick me up and cuddle me until I was asleep, then lay me down in my cot where I would open one eye and start crying again.

I was born with a squint in my right eye (a lazy eye), which wandered inwards; so, at the age of one year, I had a squint correction and an examination under anaesthetic (EUA). At the age of four, I was laying on the floor colouring when I said to Mum, “My eye has gone all funny.” I didn’t say any more about it, but when she tested my right eye a bit later, by covering my left eye and holding up her fingers, I could not see.
Fortunately, we were going to Moorfields the next day, having been referred by the optician.
At Moorfields, we met Mr Aylward, who was to be my consultant for the next eighteen years. Clumps of abnormal blood vessels were discovered in both of my eyes. The abnormal blood vessels in my right eye had bled into the vitreous (the jelly part of the eye). They said to leave it a few weeks to see if it would clear on its own, but it didn’t. I had a vitrectomy under general anaesthetic; this removed the jelly which contained the blood.
A few months later, my retina detached in my right eye, so I had to have it repaired under general anaesthetic. My memories of that time are good, as Mum tried to make it as fun as possible. I had a bag of presents to open from a friend whilst in hospital and when it was bath time, I had these Tiny Tots toys that squirted water if I filled them up and squeezed them. I found it rather funny to squirt Mum and make her all wet.
The only thing that left an emotional scar on me at that time was the smell of the dressing that they put over my hand with the numbing cream. Whenever I thought about those times in hospital, the smell of the dressing would return and it would make me shudder, and still does. Also, I went off pizza for years as I had pizza in hospital and hated it.

The question I have always asked myself is, why hadn’t these abnormal blood vessels in my eyes been discovered when I had the EUA at the age of one? Could some of my future problems have been prevented? The sad thing is that before all this, I was quite a happy, confident child and was where I should be with my development, etc. That changed. I don’t know if it was to do with the two operations I had, or leaving pre-school (where my mum was pre-school leader at the time) to start primary school, or my best friend leaving the school, or if it was all three things combined, but I lost all my confidence and fell behind my peer group.

Another theory that I have is that it wasn’t correctly understood how much I could actually see. I was