A Descent Into Darkness

Copyright © 2018 by Simon Mahoney

Website www.WingingItBlind.com

Printed in the United Kingdom

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 or recording without the permission of the author.

Cover design and layout by

www.spiffingcovers.com

Smashwords Edition

DEDICATION

For Kelly, Allison and Kate. They know who they are and what I owe them.

And not forgetting the people of Ashbourne in Derbyshire for their unfailing support and kindness.

TABLE OF CONTENTS

Foreword by Ian Foreman CQSW, Dip.Ad.Sw, MA

Acknowledgements

My rules of Engagement with Sight Loss

Introduction

Part One: Life Before Sight Loss

Part Two: Facing the Beast

2.1 Registration

2.2 Battle Commences

2.3 A Glimmer of Hope

2.4 First Hesitant Steps

2.5 Active Engagement with Acceptance

2.6 The Cost of Acceptance

2.7 Moving On

Part Three: You Will Never Catch a Pig in an Alley with Those Legs

3.1 Overview of Sight Loss

3.2 The Physical Toll of Blindness

3.3 Visual Side Effects

3.4 Charles Bonnet Syndrome

3.5 Influence on Balance

3.6 Getting About

Part Four: Moil and Toil All The Day Long

4.1 Hands, Knees and Elbows

4.2 The Presence of Others

4.3 Check, Check, and Check Again

4.4 Apparent Forgetfulness

4.5 The Toll of Tiredness

4.6 Putting it into Perspective

4.7 Stress

Part Five: Getting it Back Together Again

5.1 Exercises to Help Restore Proprioception and Balance

5.2 Miscellaneous Exercises

5.3 Yoga in the Dark

Part Six: I Can . . . Oops

6.1 Some Ideas About Helping

6.2 Oddball Behaviours

6.3 The Importance of Touch

6.4 Seeking Help

6.5 Refusing Help

6.6 Help with Travelling

6.7 Shopping

6.8 Be My Eyes

6.9 Concluding Thoughts

Part Seven: No Man is an Island

7.1 Notion of the Pack

7.2 A Key to Inclusion

7.3 People Watching

7.4 Exclusion

7.5 Support Groups

7.6 The Way Back

Part Eight: The Other Side of the Coin

8.1 Relationships

8.2 My Wife’s Perspective on Living with Someone Who is Blind

8.3 Concluding Thoughts

Part Nine: I was Deaf and Blind Until Losing my Sight

9.1 A New Awareness

9.2 Use of Language

9.3 Individual Expertise

9.4 Other People

9.5 Mutual Incomprehension

Part Ten: Beyond Blindness

10.1 Some Basic Rights

10.2 A Possible Way Forward

10.3 Personal Aspects

10.4 The Unmentionable

10.5 Tying it all Together

Appendices

Appendix One: Registration, Tips for Daily Living, and Employment

Appendix Two: Additional Information on Charles Bonnet Syndrome

Appendix Three: Basic Communication and Assertiveness Skills

Appendix Four: Synapptic Application for Tablets and Mobile Phones

Appendix Five: Is This a Dog I See Before Me?

Appendix Six: The Original Descent into Darkness Article

Appendix Seven: A Summary of the Possible Implications of Sight Loss

Appendix Eight: The Rationale for and Explanation of my Rules of Engagement

Appendix Nine: The Theories

About the Author

Useful Organisations and Contact Details

FOREWORD

I first became aware of Simon in the early 1980s when my manager approached me with a proposition: to be the practice teacher for a student who was in the final year of his MA in social work. I was told he was likely to be a challenge. Conceit being a poor informant for decisions, I said I would be interested. But, fortuitously for me, and perhaps Simon, that arrangement did not come to pass. It could have been the end of a beautiful friendship!

I did, however, meet this challenging student a few months later, as when Simon qualified he came to work as team leader in the same town as me and, over the next two and a half years, we worked together closely in the childcare sector before Simon moved to Leicestershire. We established a mutual respect that evolved into a friendship which has extended across three decades.

The book you are about to read is focussed on two primary areas. Firstly, it commences with Simon’s journey from a sighted person to becoming unsighted where he articulates clearly, and with his customary un-sentimentality, the psychological and social impact of that journey. It sets out, with great precision, the physical aspects of sight loss, but also emphasises what blindness, or visual impairment, means on a deeper level. I believe the emphasis is well made.

Secondly, it is a handbook for those who are losing or have lost their sight, as Simon‘s descent has propelled him to examine, almost on a forensic level, how to accommodate, manage and, in many ways, overcome sight loss. The book and the appendices are stuffed full of practical advice; for example, the decision to register as sight impaired or blind is not as straightforward as it seems, as even this supposedly simple step is not always grasped by the medical profession. Another example is Simon’s sensible advice on what crockery to use at meal times. Would I, as a sighted person, have thought of this? I doubt it.

Part Two on the totality of sight loss takes, in my view, a very central role in the book, as this is where Simon charts the implications of significant loss and where his descent into darkness is developed. This section is also applicable to those who have suffered any major loss, as both the daily and the wider implications of loss cannot be ignored. The daily impact of these implications is highlighted in the book by Simon’s wife Kelly.

The multi-layered nature of the book means that professionals in medicine, those involved in nursing, caring and social work, therapists and clergy will benefit greatly from the information contained within it; equally, it will be of use and comfort to the families of anyone with a disability.

Simon’s account is lucid, funny, erudite, honest and educational, and will be a thoughtful and valuable tool for its many and varied readers. Non-sighted people have a powerful advocate in Simon, no better demonstrated than in this account of his descent into darkness.

Ian Foreman CQSW, Dip.Ad.Sw, MA

ACKNOWLEDGEMENTS

I always wondered why authors put in an acknowledgement section. Having tried my hand at writing it is now obvious! There are so many people who have commented, helped with funding, supported or otherwise been involved that it is staggering.

My thanks go to the many hundreds of people with sight loss and workers in the field who have shared their experiences. Many other people have given freely to get this project off the ground, and my thanks go to my sister Ann, Ian and Louie, Jonathon, Peter, Beverley, Janet, Gamal, Mark, the staff and customers of David Neil, Best Wishes, Tissington Trail snack bar, Ashbourne Business Centre, Coach and Horses and the Stepping Stones in Ashbourne.

To Barbara, Bev and Sylvia for their suggestions.

Thanks to Liz and Mags for their help in developing ideas and insights.

My thanks also go to Col. Mike and his constant encouragement and involvement and for mustering the support of former members of YO 32/33 RM.

To Colin and Ilene for their valuable help with the section on hints and tips.

My thanks to Ian for his enthusiastic interest and help from the earliest days and for writing the forward.

The team at SpiffingCovers, Gabriel, James, Kimberley and Richard, whose patience and professionalism have added considerable lustre to the original unpolished offering.

My thanks and admiration go to Linda and Doug who have shown so much enthusiasm, faith and tirelessness in supporting me and publicising the book from the moment they learned of it.

Finally, to Kelly, who has not only contributed but also been a combined writing widow and enthusiastic critic.

RULES OF ENGAGEMENT WITH SIGHT LOSS

These are not the only principles for coping with sight loss or blindness, so have a think about your own situation and devise others which have more meaning for you if you need to.

1. Accept your sight loss.

2. Obstacles are an opportunity to improvise, adapt and overcome.

3. Learn or improve a skill every day.

4. Listen carefully, judge slowly.

5. Sight loss is nothing to be ashamed of. Do not be embarrassed.

6. Get organised-have a place for everything.

7. Apply the Broken glass principle: try and sort out hazards and problems as you come to them.

8. Ask for help. Remember, you are the one with the problem.

9. Check everything, and go at your own pace. Rushing plus blindness equals chaos!

10. Do not be offended by references to sight. This is an integral part of language and people cannot help using them.

See Appendix Eight for a full explanation of the rules of engagement.

INTRODUCTION

There is no such thing as a typical person with sight loss. Each person who loses their sight will experience it as an intensely personal and unique event. There may be similarities between individuals, but the fact remains that everyone will go through sight loss in their own way.

There are between one and four million people affected by sight loss in the UK (the number varies according to whom you speak, however). That is between one in fifteen and sixty-four; either way, it is a large number. In the UK alone, their ranks are swelled by another person every hour. Some sources suggest one person every fifteen minutes.

I am one of them.

Sight loss affects the whole person, not just the eyes – see Appendix Seven for a summary of implications of sight loss – and the task of coming to terms with vision loss involves a great deal of work, determination, courage, bloody-mindedness and the willingness to cope with a highly demanding learning curve. The whole experience will be leavened by periods of panic and emotional chaos. It cannot be delegated, and you will stand or fall by your efforts alone. More to the point, there is no guarantee that the fight to accept vision loss will be successful, but it can be managed.

The majority of us will undergo a gradual loss of vision, which may not necessarily become total. A relatively few (one in twenty) will not be so fortunate. For them, sight loss will be total, and sometimes instant.

Sight loss may be caused by trauma, part of an existing condition such as diabetes, an addition to pre-existing illness or, as in my case, an event on its own. It is recognised that for many people sight loss may be just one more item to add to an already long list of health problems. For the sake of clarity, this account will refer solely to sight loss.

Whichever way it occurs and is experienced, we all have one thing in common: none of us know what to expect or understand fully the implications of not being able to see. More to the point – and this I have difficulty understanding – there seems to be no routine attempt to warn people about what to expect as they slide into the darkness of vision loss. For me it has been, and remains, an intensely emotional, mental and physical struggle to maintain psychological wellbeing and a sense of self. Whilst much that has happened has been, with hindsight, wholly predictable, the various and curious events of the approaching darkness were experienced as a horrible surprise.

The lack of warning by the eye care professionals, and the almost complete brick wall when trying to get answers, only served to feed my anxiety and sense of isolation. This seems to demonstrate that the sighted world – even those who deal with it at a professional level – has very little understanding of what it is like to suffer vision loss. Indeed, it sometimes appears that as far as vision loss is concerned, there are none so blind as those who can see.

Nurses, doctors and consultants, whilst excellent on the medical front, do not seem to appreciate the importance of telling patients what to expect with vision loss. As sighted individuals, they appear to not have the knowledge, insight, experience or sense of urgency to inform their patients of what lies before them in terms of the psychological, physical and emotional battles. Of course, given the pressures on the NHS, they simply may not have time to go beyond the purely medical aspects of vision loss.

In this age of specialism, where increasing numbers know a huge amount about diminishingly small areas of endeavour, we should not be surprised. If sight loss were a car, the medics would be the mechanics who tinker, diagnose and sometimes carry out repairs. It would be unreasonable to expect them to teach us how to drive as well. None the less, it would be helpful if they could point us in the direction of someone who could, particularly when the diagnosis of sight loss is first made.

The fact is that too many of us have not only to deal with vision loss, but we must do so without knowing what is going to happen next. Consequently, there is an underlying and constant fear of the unknown. In addition to this, many of us are left alone with little but our thoughts. This can often result in despondency, if not depression; indeed, the combination of this ignorance and the prospect of the horror of sight loss may, in themselves, be as disabling as the condition itself.

What follows is an account of my experiences, thoughts and feelings as my sight faded. Much of it may be startlingly obvious, and some may not. It needs to be stressed at this point that any views, opinions and speculation within this account are my own and do not necessarily reflect those of the charity Blind Veterans UK.

In any event, when newly diagnosed, individuals are facing the unknown territory of vision loss, this account is intended as some kind of comfort and guide in a new and frightening world. For this reason, I have also included some basic techniques that have worked for me.

As mentioned above, it will not be the same for everyone, but may give people an idea of what to expect and, at the very least, help them to expect the unexpected. But they will also come to understand that the unexpected is nothing to fear, and that the challenges it presents can be met and overcome; if not overcome, given time, they can be lived with.

Endurance and patience, with a good sense of humour, are vital ingredients in the fight for normal life. Or to put it another way: cheerfulness in the face of adversity is probably the best way to tackle the future.

It is my hope that in some measure they may be forewarned by the contents of this book, and perhaps comforted to know that what they are experiencing is normal. And, just as importantly, they will accept that they are not going crazy, and that everything that will happen can be dealt with.

Of one thing there is no room for doubt: not being able to see is only a very small part of blindness. It is all the other bits which transform the experience, if you so choose, into such an adventure.

Simon Mahoney

Derbyshire 2018

PART ONE

LIFE BEFORE SIGHT LOSS

As a forces brat I was fortunate enough to attend a good school where an unspectacular, yet modest, career ensued. (Having been around the armed forces for as long as I could remember, it seemed only natural that I should choose to make it my career.) I joined the Royal Marines as a probationary second lieutenant – or piglet, as the troops called us – in January 1966. I can vividly recall the sense of eager excitement tinged with apprehension on passing through the gates of the ITCRM (Infantry Training Centre Royal Marines) in Devon. The next few months proved to be far tougher than anticipated, however, and I found myself regretting the lack of preparation prior to joining.

Gradually, for unconnected reasons, my boyhood dream of a military career became a living nightmare – though obviously it was not all bad, and I also have fond memories of that time, and the whole experience was definitely character forming – and my service ended at the end of the Commando Course. This was with mixed feelings of relief and disappointment.

Walking out of the ITCRM for