Ex-Sighted,
A New Vision


Sue Boman



Ex-Sighted,
A New Vision


Sue Boman


Skillion Publishing
Ponoka, Alberta



All rights reserved.


No part of this publication may be produced, stored in a retrieval system, or
transmitted in any forms or by any means, electronic, mechanical,
photocopying, recording, or otherwise without the prior permission of the
copyright owner.


Copyright © Sue Boman 2002
ISBN 0-9683659-3-0


National Library of Canada Cataloguing in Publication Data


Boman, Sue.

Ex-sighted, a new vision


ISBN 0-9683659-3-0


1. Blindness--Psychological aspects. 2. Vision disorders--Psychological
aspects. 3. People with visual disabilities. I. Title.
HV I593.B65 2002	362.4' 1 C2002-910507-2


Acknowledgements


Many thanks to:

Lyle Boman - editing and formatting

Carolyn Hamilton - proofreading and editing

Jennifer & Jonathan Boman for their encouragement and insight


FORWARD


Ex-Sighted, A New Vision, is a must read for those
experiencing vision loss or for anyone who has
pondered how difficult it might be to be blind.


Sue Boman's book reflects her own experience, and
those of others, who have lived through the loss and
adjustment to life without sight. The stories tell us
about the personal trials, humour and joys that
people who are visually impaired have experienced
as they journey through life.


After reading this book, blind or sighted, you will feel
inspired to face anything life has to offer.


Jim Sanders

President & CEO

Canadian National Institute for the Blind


DEDICATION

For old friends and new,
and especially for

Ali, Alisha, Anne,
Bert, Brandon,
Darrel, Donna, Gerry,
Norma, Pat, Peggy,
Boss and Wayne.


PREFACE


The pages of Ex-Sighted, A New Vision, have
evolved as part of my personal journey. I found the
onset of my own vision loss to be a very isolating
experience. It was only with time that I realized I was
not the only traveller on the road. I was at the
beginning of a journey, and my story was only one of
many. Others with vision loss have shared their
stories with me. These stories have varied in detail
and circumstance, but a bond of fortitude, determination
and a fierce desire for independence has
remained a common thread. It is this shared vision
which is the foundation for this book.


The CNIB (Canadian National Institute for the Blind)
has over 95,000 clients across Canada. About 10%
of CNIB clients are totally without sight. Most clients
have some degree of sight, but not everyone who
has low vision comes to the CNIB for help.


Some CNIB clients are children. An increasing number
of CNIB clients are seniors. One in nine
Canadians over the age of sixty-five will experience
a significant form of vision loss which cannot be
corrected with prescription lenses. Past age eighty,
the odds of this occurrence increase dramatically.



However, Ex-Sighted, A New Vision, is not about
statistics. The numbers are important, but they are
merely the boundaries for what I have written. This
book is about the inner journey. It is a story of coping
and hoping. Without hope we have nothing, but with
hope and a new vision for the future, we can lead
fulfilled and satisfying lives. In spite of being ex
sighted, a new vision both enables us and empowers
us to be excited about life itself.


Sue Boman



Table of Contents


Chapter 1

The Peaks and the Valleys ................................ 1

Chapter 2

Be True to Yourself ........................................... 21

Chapter 3

Success and Failure ......................................... 37

Chapter 4

Go the Limit ........................................................ 53

Chapter 5

Support Systems ............................................... 72

Chapter 6

Life Goes On ...................................................... 86

Chapter 7

The Best Medicine .......................................... 103

Chapter 8

Ready to Roll .................................................... 118

Chapter 9

Inside Out ......................................................... 135

Chapter 10

One Step at a Time ......................................... 145

Chapter 11

Vision ................................................................ 162


CHAPTER 1 THE PEAKS AND THE VALLEYS


Kites fly highest against the wind.

Winston Churchill


I live on the prairies of Alberta, and I love it - wide,
open spaces, clear blue skies, and seasons that
announce their presence with a flourish that leaves no
room for doubt.


I love the blossoming freshness of Spring and the
chatter of the returning birds. After the first rain, it is
almost possible to actually see the budding of the new
leaves as they burst from their winter hibernation.
The landscape changes colours as if painted with the
gradual swoop of a giant brush.


Although it is brief, and often inundated with mosquitoes,
I love Summer too. The warmth of the sun
gives a glow to my skin, and I succumb to a gentle
laziness. It is that window of time when the grass is
lush and green, and the land is rich with promise. It is
a time for laughter and barbeques, kids at the
playground, long walks in the evening, ball games,
and family reunions.


1
Then there is Fall - fields of ripened grain, the heavy
rumble of farm machinery, carpets of crunchy leaves,
the honk of migrating geese, the slap of the beaver's
tail ringing out in the quiet of the ponds and sloughs, a
decided nip in the evening air, and the first frost
glistening in the morning sun. I love it all - the
sounds, the sensations, the invigoration.


Until there it is - the icy blast of Winter. It has been
anticipated. The animal kingdom has known of its
impending arrival. The birds have flown; the remnants
of the summer gardens have withered and died; the
frantic gathering and storing activity of the squirrels
has slowed. It is time, and yes, I have learned to love
an Alberta Winter too. Mild or harsh, blizzard or blue
sky, Winter in Alberta has a beauty all of its own.


But I digress! I live in Alberta, and as you know, the
western ridge of the province is lined with mountain
peaks. For those with the gift of twenty twenty vision,
these same mountain peaks are starkly visible from
most approaches across the wide flat expanses of the
prairie. From a distance, they appear as small
pyramids with snow covered crests. From the same
distance, my eyes see a white blur - possibly cloud,
possibly mountain, possibly just one of those mirages
that float across my line of sight. But place me on the
main street of Banff, or the valley at the base of
Mount Edith Cavell, or on the glacier of the Columbia
Ice Fields, and I would have a different story to tell.


2
When I stand in the valley beside these awesome
castles of rock and turrets of stone, I am impressed
by their magnitude and grandeur. This I can see! And
so it is with life. It is often our experience in the valleys
that enables us to see the peaks with greater
clarity.


Most people who experience a significant personal
loss will also experience a walk in the valleys of life.
Personal loss has the potential to transport us to this
lonely place in the depths of an emotional valley. You
will see what I mean when you read the following
thoughts from some people in their first encounter
with vision loss.


A WALK IN THE VALLEY


* When the doctor told me I had macular degeneration,
I couldn't think straight. After he said the word
'blind' I really didn't hear much else. I think I was in
shock. I thought, 'This can't be happening to me. I've
always been so healthy.' I really couldn't believe it.
Looking back, I would say it was one of the worst
days of my life.


3
* I was driving home with my wife, when I suddenly
realized that I couldn't see the road in front of me. It
was just as fast as that. I was plenty scared, believe
me. I drove the rest of the way home following the
shoulder lines. The wife doesn't have a licence. I was
scared all the way. They say I have macular degeneration.
I think I went into a kind of depression for a
while. Nothing seemed to sink in.


* I was twenty-four. For a while I thought about killing
myself. I couldn't see that there was any kind of life
out there for me. I suppose my family were beside
themselves, but at the time, I couldn't see past the
edges of this big, black hole I was in. I'm not sure
what got me going again, but sometimes when I look
back, I still get a little scared at what I might have
done.


* I was stunned when my optometrist told me I wasn't
going to get my full sight back. He kept talking about
macular degeneration, but when I looked it up in the
medical dictionary, it said it was to do with old people.
I was only forty-three. I wasn't old. I spent the next
few months in a flurry of frustrating visits to doctors
and opthamologists. When they all told me the same
thing, I started to get a real sinking feeling in the pit of
my stomach. They couldn't all be wrong. I couldn't
see, and that was that. I had absolutely no idea of
what I was going to do next.


4
* I was lucky I suppose. My blindness was temporary.
It only lasted six weeks, but I remember I was
frightened, really frightened. I had no idea of how I
would cope. I had three little ones at home, and just
couldn't imagine how I would look after them. Fortunately,
it was all corrected with surgery, but it was
the most frightening experience of my life.


* The bottom of my emotional adjustment came about
fifteen years after my eyesight began to deteriorate. I
had reached the point of total blindness, and it was a
very bleak period in my life. There were tears, lots of
tears. I had a real good cry, and I'm not one to cry.


* I think it is fair to say that I was devastated. I had
lost my husband the previous year, and couldn't
believe that life was so unfair that now I was losing
my sight. It all seemed a bit much to deal with, and in
the beginning I cried a lot. I lost my appetite, and for a
while I was taking sleeping pills to help me get
through the night. I was a real mess.


* My vision has deteriorated over the years, but I think
the big point was when I lost my ability to read. I got
really angry. Somehow I couldn't talk to anyone even
my family. It was as if this was my problem, not
theirs, and I wasn't going to share anything with them.
It must have been really hard for them, but at the
time, I was too angry to notice. When I look back now,
I just thank God for their support. I wouldn't have


5
made it without them.


* I was angry with the world, though I didn't really
realize it at the time. I thought I was coping okay, but I
kept losing my temper with everyone around me. I
was irritable all the time, and couldn't really grasp
what was wrong with me. The smallest thing seemed
to set me off. It was an awful time.


* My eyesight went so fast, I couldn't believe it. It was
only one year before I lost my driver's licence. The
hard part for me was that I'd never been sick in my
life. I had always been so fortunate with good health.
I never had headaches or backaches, never had to go
to a doctor. When I finally did see an opthamologist, I
started off with new glasses, then went through
scores of tests. The doctors were at a loss as to what
was causing it or how to resolve it.


It really hit me when I couldn't drive. I felt I had lost
my independence, and couldn't do a lot of things. I'd
always liked to fix things and do things with my hands.
Now I couldn't even mow the lawn without missing a
whole bunch of spots. I ended up feeling lonely and
sorry for myself. When I got in this state, I think I
turned on my family and got bitter with them probably
just because they were there.


6
The floors of the valleys are low indeed. Fear, anger,
denial, sadness, depression, despair - the signs of
grief - these are the raw emotions that sit all too close
to the surface in a time of bereavement after a loss.


Losing vision, whether it is sudden or gradual, total or
partial, is a loss of a part of self. When we experience
such a trauma, we also experience a sense of
grief.


Most persons take being able to see for granted. Lost
eyesight marks a turning point from a way of life that
has been familiar and comfortable. Loss of vision
means crossing a physical and emotional hurdle. We
move into a new world of the unknown, the unfamiliar,
and more often than not, the uncomfortable. The lost
vision may be due to illness, accident, or age. It may
be the result of a genetic condition. Sometimes the
loss may be accompanied by other losses. An
accident which causes loss of vision may also be the
cause of other health problems. Lost vision may be
accompanied by loss of employment and a change in
financial standing. Age related loss of vision may be
accompanied by other age related losses - death of
a spouse, loss of a driver's licence, a move from an
independent residence to a seniors lodge. Often there
may be a change in the physical ability to cope. Many
times there may be a loss of independence. These
changes may cause you to look back on your
previous life and to view it with some nostalgia. It is


7
only natural that when the going gets tough, we
sometimes take time to wish ourselves back to happier
and easier days.


Vision loss may not be the greatest calamity in life,
but it is still loss. It is a loss that is felt even more keenly when we experience it in combination with
some other loss. This combination may be quite overwhelming.


When we experience any loss, it is natural to grieve.
Most studies on grief focus on loss following a death,
but this same material can be applied to explore the
emotional effects of vision loss.


Bear in mind that just as each person is unique and
individual, so too will be the experience with loss and
grief. However, certain generalities can be stated.
Whatever else is written about grief, there are two
points that are agreed upon by nearly all major
researchers.


* Grieving is a process.


* There is no specific time frame for the process
of grieving.


It is at this point in my narrative that I would like to
turn the text back to a more personal aspect. Perhaps
you can recall a time in your life when you


8
experienced personal loss. Perhaps you would like to
turn back the pages to the comments from the section
'A Walk in the Valley'. As I listened to stories of
denial, hurt, anger, depression, sadness, yes, the
whole gamut of emotional upheaval, I recalled vividly
my own inner turmoil. I am sure that many of you
were reminded of your own thoughts and feelings in
your first encounter with vision loss. As I follow
through with this next discussion on grief, perhaps
you will be able to relate it to your own experience. I
do not know where you are in this process, but as you
see the chain of emotion laid out objectively in black
and white (or perhaps hear it on tape as the case may
be!), it should enable you to gain a clearer perspective
of your own situation. If you are at the beginning
of the process, I encourage you to look ahead with
the knowledge that there will be an easing of the
intensity of the emotions that are assailing you right
now. There is a light at the end of the tunnel. If you
are at the end of the process, I encourage you to look
back with satisfaction that you have ridden the blast of
the storm and survived. It's good to know that the light
at the end of the tunnel is not the headlight of an
oncoming train!


9
GRIEF


Generally speaking, thanatologists, the social scientists
who study death and grief, tend to categorize the
grieving process into stages. The number of stages is
varied, as are the labels which have been given them.
However, note that this division is made more to
facilitate study than for any other reason. Probably the
most important point to realize for anyone who is
grieving, is that the final stage of the process is one of
acceptance.


I especially like the wording used by Dr. John Bowlby
in his writings about the grieving process.1 He describes
four stages with the following labels:


1) numbing

2) yearning and searching

3) disorganization and despair

4) reorganization


I suppose I find Dr. Bowlby's wording particularly apt,
as it applied so well to my own situation. In the course
of the many interviews I have conducted as I researched
this book, I have found that, more often than
not, the experiences of those interviewed could also
be subsumed under Dr. Bowlby's headings.


1 Attachment and Loss, Vol. Ill Loss, John Bowlby


10
All of this is not meant to indicate that grieving is a
straightforward, cut and dried process. That is far
from the truth of the matter. The behaviour of grieving
individuals will often be identified as swinging back
and forth between one stage and another. Dr. Bowlby
himself is careful to emphasize, "Admittedly these
phases are not clear-cut, and any one individual may
oscillate for a time back and forth between any two of
them."


In other words, just when you think you have it all together,
(reorganization), don't be too surprised if you
suddenly slip backwards to despair. I recall how taken
aback I was when I first experienced this sensation. I
had been progressing very nicely into a reorganization
of my life as a visually impaired person, when
out of the blue, a verbal trigger set me off into the
depths of despair. Uncontrolled sobbing was the net
result. The boundaries of each stage in the grieving
process are entirely fluid, and flow easily from one to
the other and back again. There is no time frame, and
the process is different for everyone. The one
common factor with the time element of a healthy grieving process is that the intensity of emotion
should subside with time.


For most of the persons with whom I spoke, numbing
seemed most aptly to reflect their initial response to a
diagnosis or realization of vision loss or blindness.
While many researchers use the word denial to


11
describe one of the initial aspects of this stage,
Bowlby uses the word disbelief. This state of mind
was expressed consistently by those I interviewed.


* When he (the doctor) told me I wouldn't ever be able
to see again, I just sat there. I couldn't get my mind to
think anything. I didn't ask any questions. I just sat
there.


* I felt numb. I guess I was in shock. I didn't really feel
anything.


* I don't remember anything about the rest of that day.
I suppose I got home from the doctor's office somehow,
but I don't remember it. My mind was a blank.


* To tell you the truth, I didn't believe it. I thought that
if I ignored it, it would all go away. I didn't talk to my
family about it, or my friends. I was sure that I would
wake up one morning, and that I would have my
regular life back. I went through the motions of living,
but inside I was more like a robot. It was only when I
lost my driver's licence that it all finally hit home.


* After he got the news, John seemed to go into his
shell. For months he just sat in his favourite chair, not
talking, not seeming to notice anything around him. I
would speak to him, but it was just as if he didn't even
hear me.


12
It is not unusual for the body to go into shock as a
response to bad news. The brain basically shuts
down, and consequently important information is often
missed after the initial pronouncement of the bad
news. Although information may be available, the
person in shock may be unable to absorb it.
Inadequate information is one of the contributing
factors to the initial stage of disbelief. It is important to
revisit this point after the brain is back in 'think mode'
again.


While this numbing stage seemed to be common as a
first reaction of those I interviewed, aspects of each of
the other stages outlined by Dr. Bowlby were often
intermingled. For instance, a dramatic loss of sight,
whether total or partial, required some immediate
action on the part of those affected. This was particularly
true for those persons who lived alone. Practical
aspects of daily living needed to be considered.


* My first concern was whether or not I could continue
working. I had always driven to work. For starters I
would need to find a different method of even getting
to my place of employment.


* I knew I couldn't work any more, but if I was to continue
receiving a pay cheque to support myself, there
were countless forms to be filled out. These were
forms that even my sighted friends seemed to have


13



difficulty deciphering.


* I wondered how I would get my groceries. Here I was, a world traveller, yet now too scared to cross the
street to the corner store.


* My head seemed to be spinning with all that I would
need to do, but I do remember that one of the first
things I did, was to get the wife to take me out to buy
a good pair of walking shoes. I knew I'd be doing a lot
of walking from here on in.


* I live alone, and when my eyesight started to deteriorate,
I think that one of the things that bothered
me was a feeling of isolation. I had my daughter come
to the house and write all of my important phone
numbers with a fat felt marker. I posted them on the
wall by the phone. I know that the phone company is
really good about assistance, but at the time, I still
wanted my independence. Later on I got a CCTV
Reader, and I'm still able to use it for most of the
reading I do. In fact, I'd be lost without it.


In his writing on loss and grief, Dr. Bowlby refers to
the second stage of bereavement as yearning and
searching. If the search is for a deceased loved one,
the best that can be hoped for is a resurfacing of
memories. Many times this is the best that can be
found in a search for lost vision. In both cases, these
glimpses or fleeting visual images may be either


14
comforting or frustrating. In both cases, the memories
help keep alive what has been lost. Eventually we will
be able to look back on this phase as a cushion, or
perhaps a bridge which takes us from the initial disbelief
and state of apathy to the present reality.


Sometimes, however, the yearning and searching for
lost vision may have a more practical connotation.
After the initial medical prognosis, there frequently
follows an intensive search for the miracle cure or
remedy. This may range from an investigation of current
surgeries involving transplants to a survey of
herbal treatments and vitamin supplements. There
may be a search for assistive devices and technical
equipment that will enhance remaining vision. The
outcome of these quests will be as varied as the
numerous conditions which have caused the problem.


Have you experienced this? The search itself is
different for everyone, but I believe there are some
common points for a healthy search.


* A search to improve, restore or enhance existing
vision is necessary. How wasteful it would be if there
was something out there to help you, and you missed
it simply because you hadn't looked for it.


* Ask the experts, and get a second opinion. Blindness
or vision loss may be new to you, but the
experts work in the field and have a wealth of


15
knowledge and information at their finger tips.


* There is no satisfaction in purchasing vision aides
that do not work for you. If it doesn't work for you,
leave it on the shelf.


* Once you have investigated every avenue and
exhausted every possibility, put your search on the
back burner for awhile. There comes a time when you
will need to get on with your life. Even though there is
nothing out there for you right now, don't give up hope
completely. Optical research is progressing by leaps
and bounds, and who knows what the future may
hold. Keep yourself informed about current studies
and findings in the field of your own eye condition.


So, here you are, numbed with shock, and frustrated
with the efforts of what many times seems to be a
fruitless search for the miracle cure. What does Dr.
Bowlby say comes next? He lists the third stage as disorganization and despair. The despair comes as
the newly ex-sighted person begins to realize that it is
necessary to 'redefine both self and the situation'. In
other words the newly blind or visually impaired person
must come to a realization of leaving the past
behind, and moving on to the new situation of vision
loss. This redefinition of self is the first real step forward
towards acceptance.


16
The trite saying 'No one said it was going to be easy',
is certainly true when one faces a traumatic loss, and
the loss of vision is no exception to this rule. The loss
is of vision, but also of a former life style. Things are
not going to be the same as they were. I am not going
to dwell at length on this stage of grief. If you have
been there, you know what it is like. If you haven't
been there, I'm not sure there are enough words to
describe it to you. The despair is like a black pit which
threatens to swallow you. You are overwhelmed by
persistent waves of emotion. Alternately, either a
fierce rage or an unendurable sadness threatens to
engulf you. You may experience a real burdening of
the body and soul. It is the turning point from yearning
for what is past and the realization that, if life is to
continue, the past must be left behind.


As I travelled my own journey through vision loss, I
discovered that the intensity and frequency of the
grieving emotions did indeed decrease over time.
However, as I am a relatively private person, I tended
to internalize most of those feelings. Consequently, a
more surprising discovery came for me as I spoke
with others about their journeys through grief. Even
those who had appeared outwardly to adjust with
apparent ease, confided that they had had a similar
inner journey of sadness and hurt. In spite of the
outward face they had presented to the world at large,
each person had walked his or her own journey with
the experience of vision loss. I found it comforting to


17
come to the understanding that we are all human and
fallible. The recognition of this common bond has
served to make me stronger and less isolated. It is my
wish to share this knowledge now with all of you, in
the hope of encouraging you in the same way. You
are not alone.


Each of us in the blind and visually impaired community
has had his or her own journey. We have each
had to tackle our own personal fears and meet the
challenges that are specific to our own lives. We can
never totally understand another human being, unless
we physically climb right into the brain of that person.
That is impossible of course, but we can talk to each
other, and listen to each other in an attempt to bridge
the gap of understanding. We are never alone in the
shared knowledge of our struggle. We can make each
other strong.


All this leads us to the fourth stage of the grieving process.
It is one of acceptance. Dr. Bowlby labels this
as a greater or lesser degree of reorganization.


Have you ever seen the movie Sliding Doors'? The
film is an interesting comment on the what if's of life.
The story line shows the double life of a young
woman who at first misses the waiting train at the
station, and in another life, arrives just in time to step
through the sliding doors onto the train. The story
follows both lives with the what if theme. However, a


18



clever twist at the climax reveals that only one life can
be lived in a lifetime.


I think that is what acceptance is all about. We are
given one life, and mental deliberation of the what if's and if only's is pointless. Acceptance is grasping the
life that we have been given, and living that life to the
full. Each person can come to this acceptance by
assuming the responsibility for the quality of his or her
own life. As a rule, we cannot control the circumstances
of life, but we can choose our reaction to
those circumstances.


In the following chapters you will read the stories of
some very remarkable people who have chosen to
respond in a very positive way to the circumstances of
blindness and vision impairment. My life has been
touched by their stories. These are people who have
chosen to react to their circumstances with a new
vision.


What comes after the walk in the valley? It is the
ascent to the peaks, of course. By its very contrast,
the ascent can be exhilarating. If we choose to do so,
we can emerge from the valley with a sense of hope
and optimism. The peaks may not be Everest, but the
climb to each summit can be a journey towards
renewed self-esteem and fulfilment. If we allow it, our


19
experience with grief and vision loss, will give us a
new appreciation for all that life has to offer. We will
be able to concentrate not so much on what we have
lost, but rather on what we have gained.


20



CHAPTER 2
BE TRUE TO YOURSELF


Bert sat across the table from me. His office was
comfortable yet uncluttered, with the side desk lined
with computer and scanner. Bert himself was
dressed in a suit and tie. His neatly trimmed hair and
beard had traces of grey. As his gentle voice began
to recount the familiar words of his personal journey
with vision loss, I listened intently and pushed my
tape recorder a little closer across the table. Bert had
told the story many times. He told it in an attempt to
make others stronger, but I had the impression that
Bert, too, gained strength in the retelling. Now I was
asking him to tell the tale for a wider audience, the
one reached through the pages of this book.


I had first heard Bert's story when, as a new client, I
entered the doors of CNIB some fifteen years previously.
When I reminded Bert of this, he recalled the
occasion and smiled reflectively.


When I remember that time, it makes me think ... we
change. The stories I tell about when I first lost my
sight are true, but that is not me today. I was a
different person than I am now. Things change.


21
Bert's vision loss was originally detected during a
routine eye examination by the school nurse when
he was in Grade 9. Bert remembers that he had
trouble reading the eye chart. Each letter seemed to
be disguised by a thin white line right across his field
of vision. As he focused on each letter, he had to
wait for the line to disappear before he could read
the print. As this happened with every letter, the test
took much more time to complete than was appropriate,
and the nurse referred Bert to an opthamologist.
The problem had been detected, but the
cause had not. This first visit led to several years of
visits to opthamologists and multiple tests to probe
the cause of Bert's deteriorating eyesight.


When this further testing ruled out diabetes and
various other health conditions, Bert became accustomed
to being called before teams of doctors for
periodic examinations. No one had a definite answer,
but eventually a neurologist suggested the
possibility of a brain tumour. The next stop was a
hospital in Montreal for a repetition of all the previous
tests, examinations again by teams of doctors, and
finally exploratory surgery.


I am really not sure how I was feeling at that time. I
was just a teenager and they were talking about a
brain tumour. I was fairly well together emotionally,
and had good support from my mother. After the
operation, the surgeon came to me and said, "I have


22



some good news for you and bad news. The bad
news is that they didn't find a tumour. The good news
is that your brain is nice and healthy and you're
going to live till you're 99." Bert laughed. I'm going to
keep him to that one!


No brain tumour was good news and bad news. Bert
was not overly happy, as the uncertainty was once
again back in his life. However, he returned to
Edmonton, and was referred to yet another opthamologist.
The problem had to be in the eyes themselves.


Bert also had to return to school. He was now in
Grade 12, and had undergone a surgery foreign to
the experience of most teenage boys. He was glad
that it was winter and he could wear a toque to cover
his shaved head and incision scar. For the most part
he was treated well, but he does recall one incident
where the toque was snatched from his head by
another student. Bert remembers being most unhappy
about that circumstance.


Bert was now having trouble reading for more than
fifteen minute intervals. The demands of schoolwork,
challenging for any Grade 12 student, were pressing
indeed.


23



At the time, I felt very much alone. I felt I had to rely
on my own self. I was alone. No one else could assist
me. It wasn't a very nice feeling. However, I've
always been a very strong person - perhaps I could
call it stubborn - and that helped me through. But I
still remember feeling alone. I didn't know anyone
else who had experienced vision loss or surgery. I
felt quite alone and isolated in my experience.


Bert lived by his wits at this time in his life. He did his
best to pass as a sighted person. When his economics
teacher called on him to expound on a textbook
chapter, he remembers that he cited examples
from only the first section, as he had not been able to
finish reading the entire assignment. He was faking
it. Much later on, he was to learn that this strategy is
a common phenomenon when people first experience
vision loss.


I also remember that as my condition was getting
worse, it was always on my mind. I would be sitting in
class, and my mind would drift, and I would wonder
about the size of the blind spot in my eye. At this
point, it was beginning to translate to a blurred,
greyish central area. I would measure the area
against things on the blackboard and around the
classroom. It was something that was on my mind
most of the time. It really was. I don't think I was
depressed, but I certainly did feel alone, and not
certain what the future would hold, or how I could


24



manage things if I couldn't see to read very well.


During the last years of high school, a series of
incidents brought Bert both to a closer acceptance of
his vision loss, and to a greater determination not to
allow it to defeat him. A major blow came when he
was refused admission to a college social work program.
The reason for the refusal was not based on
Bert's own marks, but on the failure of a girl in the
previous year. This visually impaired student had
experienced difficulty with the same program. Bert
was very angry to think that he was being judged
according to someone else, rather than by his own
merits. He thought it was totally unfair of the college
to assume that he would not be able to cope because
someone else had been unable to do so.


Bert did not give up. He went on to take General Arts
and Science courses. He stuck to his original goal,
and a couple of years later was accepted into the
social work program at a different college. At this
stage he was using large print, and family members
were helpful in reading longer course material to
him.


It was also at this stage that the doctors decided to
affix a new label to Bert's eye condition. Possibly he
had Coat's Disease. He developed secondary eye
conditions - cataracts and glaucoma. His recollection
of the pain associated with the latter was quite


25
vivid.


I was in Vancouver to see another opthamologist,
and was also waiting for laser treatments. The pain in
my eye was so intense, even after I had taken the
prescribed pain killers. I remember standing on my
head for minutes at a time to see if the different
position would relieve the pressure.


Although Bert's vision remained fairly stable for his
college years, he was constantly aware of his problem.
One professor suggested that he consider
taking a lighter course load. However, even though
Bert didn't have reason to believe that his sight
would disappear completely, he still felt an urgency
to finish his study. There was a sense that this was a
race against time.


Bert was still trying to pass as a sighted person, still
trying to find ways of doing things so that he wouldn't
have to explain that he couldn't see. In retrospect, he
realizes that his attempts were not always successful.


I had a U-shaped window of vision, which meant that
if I wanted to actually see anyone or anything, I
tended to look at them sideways. I noticed that
people were looking over their shoulders when I
would be talking to them. Once, at a party, a rather
rude fellow called me on this, demanding that I look
at him when I spoke to him. I was not happy with this


26
fellow at all, but it did draw to my awareness that this
habit of mine was very noticeable. After that I decided
to make others more comfortable, and I would try to
look straight at them, eyeball to eyeball. It wasn't
always easy to do. I had to try to remember to look
straight, when really, I wanted to see. It was more
disconcerting than anything, because really, I wanted
to see people's faces. I wanted to see their expressions
when I spoke with them.


During the early years of Bert's changing vision, he
had sporadic contact with CNIB. The visits were not
particularly successful. He didn't want to have anything
to do with CNIB and admits to being very upset
and uptight. At one of these visits, he was offered
taped books, but had no real comprehension of what
these were. He refused. At another visit, it was suggested
that he take woodworking classes. Again he
refused. He felt that this was not in keeping with the
direction he wanted his life to take.


It was not until the end of his second year in college
that the first meaningful contact took place. Bert took
a summer position in social work at the CNIB. During
this time, and as part of his job, he took daily Braille
lessons. It was a blessing in disguise.


27
I never would have asked for the lessons myself, but
it was their suggestion. They thought it would be good
for me. I thought, well, it's their idea, and I'm getting
paid and I'm learning something new, so no problem.
That summer I took my Grade 1, and the majority of
Grade 2 braille.


This summer job was the beginning of a full time
career for Bert. In the fall, he was offered a permanent
position as a social worker with the CNIB. After
some inner debate, he decided to accept, and he has
had a rewarding experience with the agency. Over
the years Bert has earned the respect of clients, coworkers,
and administration alike.


I've been with CNIB for 27 years now. I feel very fortunate
to work in this kind of setting. It's a very
positive setting, and there is a certain amount of
freedom because the CNIB is a private agency.


As Bert embarked on a career of counselling, he continued
to struggle with his own vision loss. Bert's
remaining sight deteriorated. Additional laser treatment
was recommended and over a six month
period, he had more than one thousand shots of the
laser beam in his left eye.


It was a very difficult time. My vision would go down;
I would have a laser treatment, and the vision would
start to return, which was wonderful. Then a week or


28



two after that it would decline, and I would have more
laser treatment, and it would go up again. It was
really, truly the roller coaster of vision loss. I found it
extremely difficult.


The fluctuations in Bert's vision continued as he tried
to maintain a normal life in other areas. There was a
job opening with the CNIB in Calgary. Bert applied
and was accepted. It was a good career move, but
also triggered the most difficult time in his life. Bert
had never lived in Calgary before, and he had no
friends or family there. He was on his own. He was
dealing with the effects of recent laser treatment,
facing total blindness, and beginning a more consistent
use of the white cane.


I was somewhat nervous, as I really hadn't taken
much mobility training before, other than knowing all
the techniques. Because of the change in my vision
from partial to total loss of sight, the Calgary streets
all seemed crooked to me. It was because of the way
I held my head to see when I had some sight. Now
that I had no sight, I still held my body to the side
even though my eyes were now looking straight
ahead. The imbalance would often cause me to walk
off the edge of the curb.


On my first day of work, I became quite disorientated.
I found my way to the office okay, but when I retraced
my route in the afternoon, it was a different story.


29



When I got off the bus, I found a construction fence
where that morning I had walked on the sidewalk. As
it turned out, I only thought I was lost. It was the early
1980's and there was a building boom in Calgary.
During the day while I had been working, the sidewalk
where I had walked in the morning had been
torn up. Construction had begun on a new building
and a huge fence had been erected around the area.
I can laugh about it now, but it was disconcerting at
the time!


My time in Calgary was the most difficult personal
time for me. I was totally blind, still having some laser
treatment, and really didn't have any support. I didn't
have any family or friends around. That was the most
difficult time for me. Some people talk about going
through a black or bleak emotional time in their life.
That would be the time for me. It was very short-lived,
but nevertheless, I could tell that that was the time
when I hit the bottom of my adjustment emotionally.
After that time, I did feel the upswing, but for me, that
time was the bottom. I've never been to that point
again. Adjusting emotionally to vision loss is the
hardest thing I ever did in my life.


After his stint in Calgary, Bert transferred back to CNIB in Edmonton. Life settled into a regular pattern.
One of the things that Bert was learning, was that he
had to adjust some of his behaviour patterns. Living
as a blind person was not the same as living as


30



either a sighted person or even a person with limited
sight. Without visual clues, Bert had to rely on
memory and patterns of behaviour. Even little things
like clearing dishes off the supper table became a
learning experience. One night, Bert had decided to
leave this chore until the next morning. When he
came to the table in the morning, he was quite surprised
to find a full jug of milk still there from the night
before. Bert had deviated from his regular behaviour
pattern of immediately clearing the table, and without
the visual clue, had forgotten the full jug of milk.


Bert moved back into his old condominium building
in the city, and walked to and from work each day.
One day, however, would prove to be quite different
from all the others.


At a summer concert on a CNIB outing, Bert met
Dina, a volunteer with the agency. They got along
famously right from the start. They saw each other
constantly and were married within six months.


This was an especially happy time for Bert. In fact,
thirteen years and two daughters later, it is obvious
that Bert is still delighted with married life. In the
beginning, though, as well as the usual adjustments
made by most young couples, Bert found some
unexpected personal adjustments.


31
When I got married, I discovered I had more limitations.
To that point, I had lived alone and done everything
on my own. I did my own cooking, shopping,
travelling, and all with no problem. When I got
married, I was confronted with some of the things I
couldn't do. I was really surprised by that.


There was another both interesting and surprising
thing that happened. When I was single I did everything
by myself. Now there were two of us, and I took
the opportunity to put my feet up. I thought that
married life was the best. I wasn't doing it all on my
own.


However, there was a problem with this. After a number
of months, we were expecting our first child, and
Dina started to ask me to do more around the house.
The interesting thing was that, inside, I felt that I
couldn't do some of the things she asked me to do.
These were some of the things that I had done lots
before, but it was the idea that if you don't use your
skills, you start to lose them. You lose the confidence.
I had to struggle with that. I did recapture those skills,
but it was an internal struggle.


An incident a couple of years later, proved to Bert
that he was back on track. Their daughter had been
sick in the middle of the night. As Bert knelt by
Chantal's bed, he discovered there was some cleanup
and comforting to be done. Now Dina, too, must



32



have realized Bert's struggle to reclaim his independence,
as when he called for her assistance with the
sick room, she was able to encourage him to deal with it himself. Most parents will be able to identify
with the events that followed - laundry, bath, tears
and cuddles. Bert took care of the crisis of the
evening, and as any other parent might do, he did it
on his own. As he tumbled into bed that night, he
knew that he had passed another hurdle.


Bert continues to live in Edmonton with his wife,
Dina, and their two young daughters, Chantal and
Michelle. His personal journey with vision loss continues
as he seeks and meets new challenges in his
life.


I always find I have to do some new things rather
than the same things over and over again. I find new
projects that keep me stimulated. I've always really
enjoyed working with people and being with people.
I want to be an instrument in being helpful with
counselling, or even just providing information. In all
this, my motivation has come from within myself. The
drive is from within.


For the most part, I've always viewed blindness as a
challenge. In a sense, blindness has made me more
alive. Prior to vision loss, I don't think I was overly
motivated, but blindness has given me the motivation
and the challenge to maintain independence. I've


33
always been a very independent person, but blindness
has, as it were, brought me back to life.


Life can be really good after you work through the
difficult times of adjustment, the learning of skills, and
the problems arising out of blindness. There can be
quality of life. The big difference between being blind
and not being blind is that you can't see. But you're
the same person. You feel the same inside. You
have the same hopes and dreams; it's just that you
can't see.


Life is good for Bert. He has a wonderful family and a
steady job. He has good friends and colleagues. He
has travelled to the mountains of Alberta and the
beaches of the Gaspe Peninsula. He has enjoyed
the pleasure of ice skating with his family and the
thrill and exhilaration of downhill skiing. Bert enjoys
life.


The time I had with Bert was drawing to a close, but
before I took my leave, I needed to ask him another
all important question. Bert had experienced sight,
partial sight and blindness. From his experience,
what advice could he give to anyone who was just
beginning a journey of vision loss?


People do need to admit it when they have a problem
with vision. Then they can work hard to
overcome the difficulties. If you face it, head-on, it can



34



be dealt with. If you put it aside and don't face it, you
could be dealing with the implications of that for the
rest of your life. So, even though I know that everyone
is different, facing problems head-on, even
though they were difficult, was the best way for me.


Another piece of advice is to go out and have fun.
Try different things. Accept invitations, and go out
and have fun. You may not do things as well as your
friends, but you can still have fun. It's all in the attitude.
We all need to work on a positive attitude.


I think it is important to be able to share with a few
people how you're really doing inside. It's wonderful
to have some people around you who have some
degree of vision loss, but this is not to suggest that you should design your life so that there are only
blind or visually impaired people around you. That, to
me, is a little too limiting. There's room for all different
kinds of people in all of our lives to really broaden
our lives.


Be true to yourself. People need to be true to themselves.
They need to go after what they want in life.
They need to take from others, like social service
agencies and rehabilitation agencies, what they
need, and use that, but go after their own personal
hopes and dreams. Don't let others dissuade you.
Don't listen to all the people in the street, who will
stop you to say, "Oh you poor blind person." Leave


35



that alone. Just listen to your inner self and go after
your own personal dreams. You can accomplish, you
truly can accomplish, whatever you want.


36
CHAPTER 3
SUCCESS AND FAILURE

We only fail when we fail to try.


Success! What is it? What does it mean to you? How
do you feel when you experience success? Is
success measured differently for blind and sighted
individuals?


There are many definitions of success. Webster's
Dictionary states that one of the root words of succeed is the Latin cedo, meaning I go. What an
interesting concept! The implication is that to
succeed we must go or move or take action in some
way. Certainly, we do not proceed very far in life, or
in any venture, by standing still. We must go.


37



*** GO ***


If you want a thing, go - if not, send.

Benjamin Franklin


Moving forward after a trauma of any kind is difficult.
Emotional shock most often results in a physical
numbness. This automatic response of the body acts
as a cushion or buffer, shielding the mind from the
severity of the shock. It is as if we need to pause and
take a deep breath before going on to deal with the
reality of the situation. With a mild shock, the body
may recover within minutes. For a more severe
shock, there may be a lengthier recuperation time.


Moving from a sighted to a blind or visually impaired
world is a traumatic experience. Just how much so
varies with each individual. There are many factors
that will determine the impact of the loss.


What is the degree of vision loss?
What is the age of the individual?
Was the vision loss anticipated?
Was the loss sudden or gradual?


Will the vision loss result in other losses, for
example, job, income, mobility and other issues
related to an independent lifestyle?


38
What support systems are in place at the time of the
loss?

How has the person coped with other losses in the
past?


If you, the reader, are the one affected by vision loss,
and even if you have answered the above questions
in a negative light, do not give up hope, as there is
one factor which is already riding in your favour. If
you are reading this book, you have responded in a
positive way to the most important question of all.
Are you willing to move forward from the inaction of
first shock towards being ex-sighted with a new
outlook. If you are ready to investigate the possibilities
of success in a blind or visually impaired
world, the desire to go forward will, in itself, lead to
success. Attitude and action are the keys. Success
comes in the climb and that climb begins with the first
step on the pathway. Be ready to GO.


*** GO WITH DIRECTION ***


Even if you're on the right track, you'll get run over
if you sit there long enough.

Will Rogers


So, we need to get moving, but the sheer fact of
becoming ex-sighted often leads us into an initial
state of immobility. It is important for our well-being


39
that we do not stay too long in this state, but it is a
confusing time. The world as we have known it has
changed, and we need to change ourselves in order
to function in this new environment. Most of the time
we recognize that there needs to be a reorientation
of our goals, but this shift in direction often leads to
indecision. We need to be able to let go of the past
before we can shape the future. We need to be alert
to the concept of formulating new goals for ourselves.


How do we know when we are on the right track?
How do we know which direction to take? How can
we set new goals in this unfamiliar world of blindness
or vision impairment? When I spoke with Ali, I
thought he had some interesting answers to those
questions in his life.


Ali was working as a successful real estate agent
when he first noticed some changes in his vision.
Increasingly he was bumping into things, or knocking
things over. Gradually he became aware of a pattern
that was more than momentary clumsiness. In the
real estate business, he spent a lot of time on the
road, and he was conscious of small errors in judgment
as far as his driving was concerned. Something
was definitely wrong, and Ali decided to seek
medical help. The doctor confirmed that Ali had
glaucoma, and advised him to discontinue driving.


40
For Ali, this was life changing news. To work in real
estate, a person needs to be able to drive. Ali had to
give up his business, and consider a new direction.


At that point I was a little depressed, as I wondered
what I was going to do now. I asked myself what was
special to me. Then at one moment, one meditative
moment, I felt that maybe I had this something that I
had never explored.


I always liked colours as a child. I liked shapes, but I
liked colours more. I thought that maybe this was
something that I should do. So that's how I started.


The public library was the first resource for Ali's new
project. Ali lived in the city, and his library had a
special needs section, where librarians assisted him
in researching this new topic of interest. On the topic
of art, there was a wealth of information, and Ali
absorbed it all.


With his glaucoma, Ali was still able to see print, and
it was mainly his peripheral vision that had been
affected. He was still able to see the colours he
loved, and with his new knowledge of technique, he
began painting. I have seen Ali's work, and it is a
wonderful kaleidoscope of colour. He now has a
variety of artistic creations which he markets on
greeting cards. He has also displayed his work at
the CNIB offices in Calgary.


41
I know the frustrations of poor vision. I am not able to
do a lot of marketing of my work because of not being
able to drive, and I am handicapped in that sense.
But I have been successful. I am fortunate that I have
been successful. People tell me that I'm very
talented, and fortunate that I can do this artwork. I tell
them that I can do artwork, but that they are talented
too. You are talented in some other field. My talent
was not so much in producing and marketing my
greeting cards, but in doing them in the first place.


When Ali's life changed because of his glaucoma, he
was able to change the direction of his goals. He
recognized that he would not be able to continue
with his former career. He searched for another
interest, then followed through with his pursuit of that
interest. He established a broad outline of what he
wanted to do, that is, to paint, and then he outlined
several steps that would enable him to accomplish
his goal. It was as he became successful with each of
these smaller steps that Ali was able to work towards
his larger dream.


Ali shifted direction, but how does he know he is now
on the right track? He is happy! He is happy with his
artwork and excited about sharing it with others. He is going with direction.


42
*** GO WITH DARING ***


Life is a daring adventure - or nothing!

Helen Keller


Taking a chance or doing something new is a sure
fire way to get the adrenalin going. Even a small step
out of one's comfort zone can promote a feeling of
revitalization. If we continue in daily activities without
deviation, we live without motivation or challenge.
Stepping beyond one's comfort zone, or risk taking,
stimulates our enthusiasm for life.


Now before I continue, I want to stress that I am not
advocating behaviour that will place you in personal
danger. Not at all. While we may catch our collective
breath at the death defying feats of some Houdini or
Evil Knievil like characters, the world population
would be decimated in short order, were we all to
emulate their example.


Neither does risk taking involve behaviour that
strives to prove we are superhuman in spite of what
we have lost. Overcompensation is not risk taking.
Consider this story.


A rather senior man had just lost much of his sight.
He insisted on shovelling the heavy snow off his
driveway immediately after every winter storm, and


43



then clambered up on his roof to clear the snow there
as well. His family were concerned about the possibility
of either a heart attack or a serious fall, and
mentioned the problem to the man's counsellor.
When she broached the subject at the next session,
the man explained that since losing his sight, these
two jobs had become very important to him. The
counsellor asked how he had handled them when he
was still able to see.


"Well," the senior responded, "I hired someone to
clear the roof, and as for the driveway, well, I let the
wife take care of that."


Striving to do something just to show someone else
we are still capable, can be exhausting and not very
satisfying. It is what the senior of this last story was
attempting. Risk taking behaviour that is both energizing
and satisfying is the kind that has an inner
motivation.


A daring approach to life does not necessitate
jumping off the deep end, nor does it involve overcompensatory
behaviour. But what does it mean? It
is the ability to extend ourselves, and to reach for our
potential. We dare to go not so much in our actions,
but in our attitude. The opportunities of confronting
new challenges are far more abundant when we
come face to face with adversity. Do you agree with
the following statements?



44



* When we move from a sighted world to one of
vision loss, the world becomes a scarier place.


* When we move from a sighted world to one of
vision loss, we are faced with a brand new set of
ground rules and conditions.


The stability and regular pattern of life in a sighted
world changes dramatically with the onset of vision
loss. When we are confronted with vision loss, we
need a new kind of grit, determination and daring to
see us through. The circumstance of becoming ex-
sighted provides us with an opportunity to reevaluate
our attitude to life. It gives us the opportunity to
make life a daring adventure, and as Helen Keller
stated, to make it more than nothing!


What is success? The journey of each person will
present its own challenges. What is a challenge for
you, may be a breeze for the next person. Bear in
mind that the reverse is also true. What is a breeze
for you, may prove to be very challenging for someone
else. To approach life with daring means
identifying your own hurdles, and bunching up your
own courage to face your own hidden fears.


It is in this way that you will be able to measure success
by a personal standard. For Erik Weihenmayer,1 success meant climbing to the summit of Everest. 

1 First blind climber to reach the summit of Mt. Everest


45
For some, it means walking alone to the end of the
block. For Bert, (see Chapter 2) in one of the earlier
days of his blindness, it meant a walk to the corner
store. He often tells clients the following story of one
of his earlier experiences.


I remember one day near the time when I had first
lost my sight. I had come home to my apartment, and
was out of cigarettes. (I don't smoke any more, but
believe me, that was not the time that I contemplated
giving up the habit.) It was not a particularly nice day,
and I was craving a cigarette. I went through the
route in my head - out the door, turn right, cross the
street, the store is on the right hand side twenty
paces. But what if I got lost? Would I be able to find
the store? Would I be able to find my apartment
again? Was I crazy to be going out there on my own,
with my only guide a white cane?


In the end I decided not to take the chance, and do
you know, that is the first time I felt really blind. It was
pretty devastating.

The next week, and this story doesn't say much
about my organizational skills at the time, I came
home from work again, and found that once more I
was out of cigarettes. I really wanted a cigarette, and
some junk food wouldn't be bad either. This time, in
addition to my fears of the previous week, there was
a good Alberta blizzard blowing. Again, I went



46



through the route in my head. Could I do it? This
time, I decided to risk it.


I went out the door, turned right, walked forward. The
wind howled, drowning out much of the traffic noise.
When I came to the intersection, I listened carefully,
and when I thought there was a cessation of the
rumble of the traffic, I stepped forward.


When I crossed, I was a bit surprised to feel a snow
covered car on my left. I hadn't remembered a driveway.
By the time I had taken a few more steps, my
worst fears were realized. I was lost. I had absolutely
no idea where I was.


I was standing still, contemplating my next move,
when I heard a car pull up beside me. The driver had
rolled down his window. "Are you lost, buddy?"


When I answered in the affirmative, I discovered that
I had definitely strayed, and was now standing in the
middle of one of the main city streets. I thanked the
good Samaritan, and re-orientated, set off for the
corner store.


The drifts of snow made it difficult for my cane to feel
the way, and the wind howled about me, but I
accomplished my mission. Can you guess how I felt
when I arrived back at my apartment?


47



I felt elated!! I had done it. I had done it on my own! I
felt a fierce sense of pride.


Accomplishments come in many forms. Bert's story
illustrates that it is not the nature of the task that is so
important, but rather the attempt to achieve a goal we
have set ourselves. The success is not the perfect
execution of that task, but the fact that we have tried.


*** GO WITH YOUR DREAMS ***


What you can do, or dream you can do,
begin it.

Goethe


Dreams can be fleeting. They can be bright and
distant like the stars. They can also be the spark that
lights a new enthusiasm, a spark that ignites a new
energy. When we decide to follow the dream, that's
when we can really start to live.


There is a scene from the movie, Good Luck, which
especially illustrates what I mean. Lem's dream is to
enter a white water rafting race in Oregon. Lem is
confined to a wheelchair and at the beginning of the
movie his dream is just a fantasy. Then through a
series of movieland twists of fate, Lem meets Ole,
who has recently lost his sight in a football accident.
Lem cajoles Ole into buying into his dream.

48



In this particular scene, the two friends, one in a
wheelchair and the other blind, are doing a practice
run on the upper section of the river.


You must try to picture this. The raft is a bright blue
pontoon. Ole, being the stronger of the two, is
seated in front. Lem is seated in his wheelchair
directly behind Ole so he can steer and give
directions. The sky is blue and the trees are green.
The sunlight is glinting off the water, and all is
peaceful - peaceful that is until the pair hear the
sound of the white water rapids ahead.


In seconds, the raft is gripped relentlessly by the
rushing water. The blue pontoon bounces around,
careening perilously close to some very large rocks
until finally it overturns. The two adventurers are
tossed violently into the surging river. The raft disappears
from sight.


After some thrashing about in what could have been
a complete tragedy and catastrophe, the two manage
to haul themselves to safety on the bank. Lem,
whose wheelchair has also been washed away
somewhere downstream, laughs with exhilaration.
When he exclaims how fantastic he feels, his friend,
Ole wonders if he is missing something in the
situation! They have nearly drowned. They are
stranded hundreds of miles from anywhere, and they
are seriously limited in terms of mobility. With comic


49
astonishment, he expresses this thought to Lem.
Lem is not abashed.


"Feel your heart, man," encourages Lem. "Feel your
heart. This is living."


As the two would-be rafters place their hands over
their hearts, a look of utter satisfaction is evident on
each face. They had not conquered the white water,
but they had conquered their own apprehensions and
survived! They were following their dream. This
was living!


Success comes in cans, not in cannots.


Sailing down a river in Oregon, painting the dancing
colours of the Northern Lights, walking to the corner
store in Edmonton, these are all success stories.
What do they have in common? Can you guess? Do
you know? Each person reached down for that extra
ounce of daring and moved forward. The story of
Lem and Ole is fictional. The stories of Bert and Ali
are real life adventure stories. All are illustrations of
the measure of success.	


What does success mean to you? While it is never
wise to measure success by the yard stick of other
people, in a struggle with vision loss, it is more
important than ever that you be the judge and jury in


50
your own success story. Each person has his or her own goals and aspirations. The motivation for each
person's actions is personal. To create your own
success story, you must decide what is important to
you.


Ask yourself these questions:

What is it that has top priority in my life?

What is it that I need to do?

What is it that I want to do?

What things or people are important to me at this
point in my life?


Notice that last question. It implies that we need to be
re-evaluating our goals at different times in our lives.
Any change, whether it is employment, family status,
vision loss, or even geographic location, frequently
means a shift in personal goals.


Think about it. Think of yourself. What is it that you
want to do today? What are your dreams for
tomorrow? Think about next year. Where do you
want to be five years from now? Set yourself in motion. Remember that word, succeed. To succeed,
you must GO, but only YOU can set the starting and
finishing lines for your race.


51
The measure of success is strictly internal. Whatever
goal you set for yourself, whatever your situation in
life, the attempt to achieve that goal will measure
success for you.


	Dream your dream.

	Formulate your plan.

	Go forward with some action.


Failure isn't falling down.
It's staying down.

Mary Pickford


If this is the beginning of a journey of vision loss for
you, remind yourself that it will be a learning phase.
You may need to relearn even the basic tasks of
daily living. Try to be patient. It will come with time
and practice. How many new challenges are out
there? There are as many as you care to dream. The
world does become a scarier place when you lose
your ability to see, but be brave. Give it a go!
Success is achieved as you move forward in pursuit
of your dreams.


52



CHAPTER 4
GO THE LIMIT


Tears ran down Norma's cheeks and she gave an
audible sob. She felt out of her depth, and wondered
what on earth had prompted her to contemplate what
now seemed like an insane undertaking. She was
going to fly by herself to a place where she knew no
one. She was going to stay there for four weeks away
from all her familiar support systems. Was she crazy?
She couldn't see for goodness sake! She felt another
wave of panic sweep over her. Her husband and son
had driven her to the airport, and at the edge of her
consciousness, she could hear them now making
encouraging noises. Perhaps if they knew how
scared she was, she could persuade them to take
her home again. It wasn't too late and she really
didn't want to go any more. She must have been out
of her mind when she applied to the Seeing Eye
School. No one would blame her if she backed out
now. After all, she did have a good reason. She was,
in fact, terrified!


That was Norma of just over ten years ago. As I sat
with Norma in the August sunshine, I tried to fit this
image of her with the Norma I saw in front of me now.


53
Today's Norma is bright, cheerful, enthusiastic and
confident. What had brought about this transformation?
I had known Norma for six years, and had
met both of her guide dogs, but obviously there was
much that I didn't know. Norma's relationship with
her first guide dog, Quoddy, had been a life
changing experience for her, and I was eager to hear
of how Norma had come to that point in her life, and
where she had come to since then. So, let us start at
the beginning and I will tell you Norma's story just as
she told it to me.


Norma was diagnosed with retinal pigmentosa when
she was in her early twenties. She had gone to her
opthamologist anticipating that she might need a
prescription for new glasses. When she was told she
had retinal pigmentosa, the diagnosis was beyond
her comprehension.



The doctor told me I had RP. At that particular time, it
was just as if someone had told me that I was
wearing a red shirt. It didn't mean anything to me. I
had never heard of RP and was totally oblivious as to
what would happen. There was no history of RP in
my family. Even when the doctor told me I shouldn't
drive, it still didn't ring a bell that this was going to be
serious.


54
When Norma told her husband the news, he had a
similar blank reaction. Neither Norma nor her husband
had ever had a thought in their minds about
any eye condition, far less about how their world
could change because of one. They had absolutely
no understanding of what this news would mean for
them.


The doctor had written the words on paper - retinal
pigmentosa. Norma and her husband did some
research and found more information, but as there
was no dramatic alteration in Norma's eyesight, the
news still didn't sink in.


It was like it was happening to another person. There
was no big change in what I could see. The news
really didn't seem to affect my life.


In the years that followed, that was exactly the way it
was. Norma was a busy working mother with two
children at home. There was some vision loss but it
was gradual enough that Norma was able to deal
with it without any particular duress or worry about
the future. Coping was something she had been
doing, albeit unknowingly, for years before the RP
diagnosis. Even as a child she had had difficulty with
night vision. She remembers being quite disorientated
if ever she awoke during the night. At the
time she thought that this was probably how
everyone saw in the dark. Now in her twenties,


55



Norma was experiencing more difficulty with light
changes, colour discrimination and depth perception.
However, she was still able to cope fairly well, without
any major changes in regular routines. The big
change for Norma came when she was no longer
able to see print.


That's when it really started to affect my life, and it
seemed to happen very quickly. It seemed like I
could read, and then I used magnifiers, and then
there was no more print. It happened within months.
That's when it started to affect my life.


It was a huge blow. Norma had always been a very
self-reliant person, but now found she was unable to
read and unable to work at her former job. Her
confidence level plummeted. Her independent spirit,
which now works well in her favour, at that time
worked against her. She found it difficult to ask for
help.


Unfortunately, for me, when I thought of help from the
CNIB or from any other agency, I thought of failure. It
was a sign I had failed. If I had to go to them, it meant
that I had lost everything. Instead of being there to
help me to adjust, it was an admission that I had no sight left.


56
It is only in retrospect that Norma is able to look at
this point in her life with more objectivity. With the
experience behind her, she can see how much
easier her life could have been had she been able to
accept the help that was offered to her, not only by
CNIB, but also by family, friends, and others in the
community.


I think I was in denial. Even when the print started to
go, I could still see things fairly well. I felt I had nothing in common with other visually impaired
people. I felt uncomfortable around them. I didn't
need them. I'm sure I was in denial, but when you
have some sort of vision, I think it's like that. Even
when I lost the print, I thought, that's fine, I can still do
lots of other things. I can still get around. The fine
details were going, and I couldn't see some colours,
but I could still see. It was such a gradual thing, that
you kind of adjust to each little thing one at a time.


One doctor described it to me as being like a piece of
Swiss cheese, where the holes in the cheese were
where you can see through, but the cheese of course
you can't. That's kind of the way I could see. With the
cheese there is no pattern where the holes are, and
that is what my vision was like.


With RP everybody is different. It's never exactly the
same. It never goes the same, because it's nerve
endings that are dying. With a lot of people with RP,


57



you lose the peripheral first. That's why it's sometimes
known as 'tunnel vision'. I lost more of the
central vision first, but everyone is different.


With the loss of her ability to see print, and the loss of
her job, Norma slid into a deep depression, and a
state of silent rage. She cocooned herself in her
house, rarely going out into what had become for her
an unsafe and unfamiliar environment. She was still
refusing help from anyone, and isolated herself even
from her own family.


I think my whole brain had shut down, because I lost
my confidence in myself. I came from being able to work every day and look after my kids, to feeling as if I could do nothing. I was afraid to leave my house. I was so depressed and I felt so worthless.

Norma was angry, but still felt unable to share her
feelings with anyone. Wrapped up in her own misery,
she was unable to see how those closest to her were
also hurting and in pain. It is a regret which she is
only now able to voice aloud.


If I have any influence on anybody, it's that I hope
they would know that this vision loss, or any loss,
does not affect you alone. It's not just your problem. I
ignored the feelings and hurt of those around me, but
I know now that it wasn't just my problem alone. I
think now how selfish I must have been to think that



58
there was just me dealing with it.


Norma is not sure exactly how or when she began
the climb out of her depression. In spite of everything,
a small part of her mind clung tenaciously to
hope. Norma's family continued to be supportive,
and one sister was especially encouraging and persistent.
Eventually Norma decided to go for counselling.
Norma had reached a point where she either
had to ask for help, or just give up. The counselling
brought more tears, but also a renewed anger which,
this time, seemed to stimulate her to action.


I really hit bottom. I thought I was living, but then I
thought, this isn't life. No one can live like this.


When I first went to the counsellor I couldn't even talk
without bawling. When someone came from CNIB, I
cried for two hours, and she did nothing but hand me
Kleenex. But it was the start. I needed to get back into
control.


It was all a struggle. Nothing was easy. Even to talk
about her vision loss was difficult, but Norma persisted.
She worked diligently with orientation and
mobility training, drumming up the courage to go out
again.


59



Starting with a white cane was the hardest thing I
have ever done. I had to be out there with a cane and
admit that I couldn't see. The public would know that I
couldn't see because I had this stupid white stick.


It was around this time that Norma began volunteering
at the local CNIB office. Being asked to do
this was another boost to Norma's confidence. The
idea that someone believed in her and trusted her to
do a job gave her new hope. There was a sense of
purpose to her life again.

That, to me, was my door opener. I was put into a
situation where they had confidence in me, and I did
it! I was given responsibility again.


I had to take the bus to the office by myself. The first
time I was terrified, but every day it got easier. I had
the skills and I had to practise using them. The
volunteer and community work was my life line, and
in some ways it still is.

The move from white cane to guide dog was the next
step. Norma became adept in her use of the white
cane, but still didn't feel that she had a lot of
confidence in herself. She would still get into situations
where she felt uneasy. She knew that her family
still worried about her when she was out alone.
Gradually she began to entertain the idea of
applying for a guide dog.


60
She talked with other dog owners, and researched
several schools. Eventually she came to the conclusion
that she could have more freedom and more
confidence if she had a dog. She filled out the application
forms and sent them off to two schools whose
philosophy and dog ownership policy she preferred
over others she had read about. The Seeing Eye
School in Morristown, New Jersey, responded
promptly to her enquiry and the process was begun.
Four months later she received a phone call with the
news that there was a spot for her in the next training
session.


Now that the die was cast, Norma wavered back and
forth in an agony of indecision. Should she or
shouldn't she? Could she or couldn't she? The
Seeing Eye School was patient and sympathetic.
They understood her dilemma, and yes, she could
change her mind right up to the last minute if she
decided that a guide dog was not right for her.


This all brings us to Norma at the airport. It is a picture
of Norma still oscillating; Norma still fearful and
unsure. It is also a picture of Norma still obstinately
independent, and still ready to attempt this one more
step into the unknown.


It was the scariest trip I ever had in my life. I was
terrified. My husband was reassuring, but it was still
very scary.


61
Norma has not regretted taking that step. The trip
went well, and so did the four week training session
with Quoddy, her new German Shepherd.


The school was wonderful. They welcomed me with
open arms. It was unbelievable. I felt so comfortable.
They talked to everyone with such ease and respect.
I felt like just another normal person. It just amazed
me.


As I listened to Norma speak, I was reminded of an
emergent butterfly. When her blindness had accelerated,
she had shut herself away in a protective layer,
with sleep as the only panacea. Now she was testing
her wings again. The world had always been there,
but she was seeing it with new eyes, the eyes of the
soul.


Norma's group at the Seeing Eye School consisted
of five new owners, the dogs and a trainer. There
were four similar groups in the class. The first two
days were spent in general orientation, and then the
serious training began. Norma found that as well as
bonding with Quoddy, she also bonded with the
other new dog owners.


I had come from a smaller community. Now I was in a
centre where there were blind people from all walks
of life. There was such a camaraderie with these
people, and such an attitude of independence. It was


62
so inspirational to me. It was like a whole new world.
I still have two of the closest friends that I will ever
have, just from that experience. The whole thing was
a life changing experience.


Norma described the bonding time with Quoddy. It
was not all smooth sailing. For starters, Norma
couldn't even pronounce the name of her dog,
though she knew it meant 'moccasin'. Quoddy
resisted Norma's initial attempts to show affection,
moving away from her to a far corner of the room. At
the first meal, Quoddy bit through her leash and ran
back to the room to hide on her mat. Norma was
devastated and was convinced that Quoddy didn't
even like her. She made another tearful phone call
home. However, she persisted with the training and
the discipline, and at the end of the month, she and
the eighteen month old Quoddy emerged as a team.


When Norma's husband met her at the airport, he
was amazed at the transformation. Norma's whole
posture was changed. She held her head and
shoulders erect. She beamed with a new air of confidence.
Norma affirmed his observation.


With the cane I felt very clumsy. With the dog I really
feel a sense of independence. She's my eyes, and I
feel I can go anywhere safely. It's like the security of
holding someone's hand. When you hold the
harness, it's just like holding someone's hand. Even


63



though you give the dog directions, you can have
confidence in the dog and feel safe.

Norma returned home and picked up the threads of a
regular life again. With Quoddy, she went shopping,
walked in the park, caught the bus, and volunteered
at the CNIB office. She began visits to local schools,
explaining to the children what life is like for a blind
or visually impaired person. She took Quoddy with
her on these school visits and talked about the role of
a working guide dog. She accepted an invitation to
be a client representative on the CNIB board,
travelling to attend meetings in Calgary. She sat on
the National Broadcast Reading Service Board,
travelling with Quoddy to attend meetings in Toronto.


There have also been some unfortunate experiences. The first came only six months after Norma
brought Quoddy home. Norma had decided to join a
fitness centre, and the owner didn't want to allow
Quoddy on the premises. Over time, there have been
a few instances when taxicab drivers and restaurant
managers have attempted to refuse Quoddy access.
In her first encounters with this uninformed behaviour,
Norma was angry and emotional. These
days she treats the incidents with calm resolve.


I look at it now as an opportunity to educate, and I do
that instead of getting angry. I try to deal with things calmly, and with the view that it's more their problem


64
than mine. I don't get upset any more. It's not worth it.
I do advocate on behalf of guide dogs, and I would
prosecute if it came to that, but I don't take it personally.
It irks me, but on the other hand, I have met
so many nice cab drivers and so many nice people, I
just feel sad for the others.


Norma now has a second guide dog. The decision to
retire Quoddy and apply for this second dog was not
made lightly. Norma's family had become quite
attached to Quoddy, and were reluctant to consider a
replacement dog who might usurp Quoddy's position
in the family home. However, Quoddy had had some
health problems, and Norma no longer felt quite as
secure when she was out with her.


The transition from one dog to another can be a
problem for dog owners. It is a little like the toddler's
reaction to a new baby in the house, except that a bit
more is involved. The original dog is used to working
on a daily basis with the blind client, and the new
dog has been trained to take on this same responsibility.
As well as the issue of responsibility of work,
the two dogs may just plain not get along.


Norma was torn between loyalty to Quoddy and a
need for a younger dog to take over. In the end she
decided to apply for a second dog, keep Quoddy on
trial, and see how the arrangement would work out.
Fortunately for everyone, it was a great success and


65



the two dogs fell into easy companionship with no
jealousy for attention or work rivalry shown by either.

Loretta, Norma's second dog, was also acquired
from the Seeing Eye School. Again Norma flew to
New Jersey. This time she felt more prepared for the
training sessions, and eager to meet the new class
participants. Even with the prior knowledge of the
scope of the retraining program, Norma was still a
little surprised by her reaction to it.


Retraining is different. You have to bond again. You
have to build the confidence in both the dog and
yourself.


During the training session with Loretta, Norma was
offered an opportunity to work with her dog in New
York City. Although Norma didn't need the experience
of working her dog in a large city, she was
excited by the prospect of playing tourist. She took
the training session, and found it was an amazing
experience.


I knew after that adventure, I could go anywhere.
Loretta worked so well. When I put her to the test,
she shone. We did everything. We went down
Broadway. We walked by theatres, studios and
restaurants. We went everywhere. It was an
incredible experience. Loretta worked through
construction sites and traffic. There were curbs,
people and even horses. There were noises


66
everywhere - birds chirping overhead and steam
hissing from the grates in the sidewalk. New York
had everything and we did it all.


My two dogs were very different. Quoddy was a
Shepherd and had a very aloof personality. She
needed her own space and let me know that. She
was not very comfortable in crowds but she was a
very serious working dog and very protective of me.
Loretta is a Golden Retriever, and has a very playful
personality. She is more comfortable in social
situations, but she can also be distracted easily. I
sense this, and know that I need to give her lots of
direction.


Loretta has been with Norma for nearly a year now,
and the two are developing a bond and confidence
in each other. Norma is still very busy with committee
and volunteer work with the CNIB. Her children have
grown, and she now has a delightful granddaughter.


Norma is not superhuman. She has struggled with
the issues of vision loss as have many others.
However, Norma has chosen to approach this with
an attitude of both humour and optimism. It is not
easy. Coping with blindness and vision loss never is,
and there will be more hurdles to come. Both of Norma's grown children have now been diagnosed
with retinal pigmentosa. It is a hurt that Norma feels
more keenly than her own diagnosis, but with it, she


67
also feels a sense of responsibility.


Even though I can do nothing to change the diagnosis,
or change the hurt, there is something I can
do. I can be an example for them so that they don't
go through what I did. I know they will have to go
through the anger and the hurt and the disappointment.
But hopefully, with what we know now,
and with my experiences, they will get through that
more quickly and easily than I did. I feel I have a responsibility to show them that life can still be happy
and fulfilling.


When we started our interview, I had asked Norma to
tell me about her dogs. I knew it was a subject that
was close to her heart.


Most people who have dogs love to talk about them.
They're like your kids. You like to brag about them
and you like to talk about them. You are with them all
the time, so they become a part of your life. I never
mind questions. I would rather people talk to me than
about me and my dog. I especially like to talk to the
kids because they ask the best questions. I feel that
as a guide dog user, I have a responsibility to
educate people.


On occasion, Norma's dogs have given her an
opportunity to share her philosophy of life and the
choices she has made in her approach to her blind-



68
ness. Once during a presentation to an ECS class, a
little girl asked Norma if she liked being blind.
Although it would be rare to find a blind person who
would prefer blindness over sight, Norma knew that
this was not an answer that the five year old would
understand, so she answered like this.


You know, I don't really like being blind. I would love
to be able to see if you have brown hair or blonde
hair, or if your shirt is pink or purple or red. I would
love to be able to see your face and your smile, but
because my eyes are broken, I can't do that. But
because my eyes are broken, I get to come into your
classroom. I get to bring my dog, and I get to talk to
you about people who can't see. You get to meet my
dog, and I get to meet special people like you. If I
wasn't blind, I wouldn't be here doing this.


Norma loves going to the schools and she loves
talking to people. She loves her committee work and
her volunteer work in the community. She loves
spending time with her family, and looking after her
very delightful granddaughter. After working through
the initial difficulties and the changes brought about
by her blindness, Norma has chosen to look for the
positive aspects in life.


Norma has a strong conviction of a purpose in life. In
some way, the testing of her faith has made it stronger.


69
I've always felt that there was a God, and I have
found strength in that. I think there is a plan. I don't think we live on this earth and things just happen. I
think things are meant to be the way God has planned them. I think that gives me some sense of comfort, thinking that even if I don't have a plan, He
does. I definitely lean on God a lot.

Whatever path that I thought my life was going to
take, there's been a change of direction. But
obviously there was a reason. I have seen a different
way of living, and a different way of seeing people
and being involved in their lives. This is not the path
that I would have chosen, but I have been fortunate
and I hope that I have done some good.


Norma has also been able to use her experience
both with vision loss and with other losses in her life
to give her added strength. She attributes this to what
she terms her stubborn nature, but which I will call
her tenacious spirit.


I am not willing to let many people or things defeat
me. I think I have been there, when I was really
depressed, and I don't ever want to go back there
again. I think that knowing that, has kept me strong.
When I think of the past pain and the hurt, I know I
don't ever want to do that again.


70
My final question for Norma was revealing in her
response. When I asked Norma for her advice to the newly blind, I was sure that her answers were guidelines
she was striving to follow in her own life.


Don't short change yourself. If you want something,
you'll figure out a way to do it. Don't limit anything. If
you think that you can do it, go for it.


71
CHAPTER 5
SUPPORT SYSTEMS 

No man is an island, entire of itself.

John Donne


Support comes in many forms. The one constant
factor is that we all need it. In the complicated world
in which we live, each person needs support for even
basic survival. People are social beings and gain
emotional sustenance from being in the company of
others. We tend to both laugh and cry more freely
and more frequently when we are with another person.
Even on a fictional level, Daniel Defoe created
Man Friday to be with Robinson Crusoe on the otherwise
deserted island.


*** FAMILY ***


For most of us, family is the best support system that we could ever have or hope for. In a functional family
each member supports the others unconditionally.
The relationship which begins at birth, follows each
member for life. A functional family is not necessarily


72
one of traditional nature, but it is supportive, with each member caring deeply about the welfare of the other individuals and about the family unit as a
whole. Of course, this is the ideal. When family
support works, it works extremely well.


Many people with whom I spoke mentioned the support
of family members as being a critical factor in
their ability to cope with vision loss. Those who had
not had the benefit of this family support noted its
lack. They cited its absence as a detrimental factor,
hampering their adjustment to lost vision.


It is unfortunate that this family support is not always
a given. Parents die; siblings move away; we are not
all blessed with a spouse and children. There may
be estrangement and discord within families. The
non-support of family members can have a negative
impact, whereas positive family support definitely
contributes to the well being of both sighted and non
sighted alike.


*** FRIENDS ***


While we are not able to plan, choose and arrange our family life, we are able to choose our friends. This
is not meant to be a glib statement. It is not always
easy to find a true friend, but when we do, life just
doesn't get much better. I am reminded of a few lines


73
scrawled by a high school friend in my old autograph
book. Autograph books were popular in my high
school days, and I have kept mine over the years. My
friend wrote -


True friends are like diamonds,
Treasured and rare.
New friends are like autumn leaves,
Found everywhere.


Although it has been a few years since my friend penned these lines on the school bus one afternoon,
we have kept in touch. We now live on different continents,
but I continue to think of my friend as one of
those precious diamonds.


Friendship is a bond that needs to be nurtured. To
maintain and strengthen this bond you must be loyal
and loving. You must be kind and caring. You must
be both giving and forgiving.


But wait, you say! You ask me if perhaps I am going
about this in reverse. Isn't the support supposed to
be for the person who cannot see. Absolutely so, and
from my experience, this is the way it happens.


Have you ever noticed the construction of a bridge?
The builders start from opposite banks of the river
and reach out the two spans to join in the middle.
Friendship is like that. We need to reach out to the


74


other person, knowing that as he or she reaches out
in return, we will meet in the middle.


Often the initial reaching out across the void may
cause feelings of vulnerability. Do it anyway. There is
always a giving of self with the first offers of friendship.
Try to remember the bridge. When the two
sides connect, they are welded together. The bridge
becomes a safe passage for all who travel across it,
and a protection for all who sail beneath it. When two
friends connect, it is just like that. A strong friendship
will be open and inclusive of others around it. When
you reach out to someone else, you will receive the
support you need.


New friends are like autumn leaves, found everywhere. True friends are rare gems, but it doesn't hurt
to scatter your path with a few autumn leaves as well.
If you want to develop a positive attitude towards life,
surround yourself with people who think in a positive
way. Try to put an emotional distance between yourself
and those who have a negative attitude towards
life.


Do you remember what Bert said in Chapter 2? When people come to you in the street and say, 'oh
you poor blind person', leave that alone. Don't go
there.


75
What excellent advice! We need to disassociate ourselves
from people who give us negative thoughts
and negative feelings. If we surround ourselves with
pity, we will become pitiful.


Now do you remember Norma's statement when she
was talking about the people she met at the Seeing
Eye School? (Chapter 4). Norma commented that the
people she met displayed such a spirit of independence.
They were inspirational to her. These were
people she liked being around. They made her feel
good. She felt her own confidence and self-esteem
boosted simply by being in their company. We need
to strive to find this type of companionship in our
daily lives. By surrounding ourselves with uplifting
people, we will be lifted up. This is a support system.


*** FORMAL SUPPORT GROUPS ***


Everything I have written so far could be applied to
both sighted and blind individuals alike. Everyone
can benefit from the support of loyal friends and
family members. What about the special needs of a
visually impaired person? What additional support
systems should a blind or visually impaired person
have in place?


76
Many people who have suffered an adversity of
some sort find it helpful to belong to a support group.
In this setting, opportunities are provided for sharing
common problems and challenges. The group may
then explore possible solutions to problems and
ways of coping with such challenges. One function of
a support group is to provide an opportunity to air
concerns that are specific to the group. In a support
group for persons with vision loss, there may be an
opportunity to discuss particular eye conditions and
the specific effect they have on one's vision. A conversation
with someone who has actually had the
experience will likely give a different slant or perspective
than a similar discussion with one's opthamologist.
While no one can ever totally understand
another person, the common denominator of vision
loss does provide a broader base for understanding.
There is an empathy that exists between two blind
persons that does not exist between a blind and a
sighted person, no matter how closely knit the
relationship may be in all other areas.


I think this last is a very difficult and somewhat disconcerting
concept for the sighted spouse, child or
parent of a blind individual. Some sighted persons
feel hurt or slighted that they are not able to share
this very personal aspect of the blind person's life.
However, where the sighted person does not feel
threatened, but rather is able to encourage this other
support relationship, it seems that a new dimension


77



is added to the original blind/sighted bond. A new
strength is evident all round.


In support groups for those with vision loss, members
can share the challenges they face because of
diminished eyesight. There can be a sharing of information
and of new research. Up to date technology
can be previewed and displayed. Guest speakers
may share motivational and inspirational personal
stories. A support group meeting should leave members
with a positive feeling about themselves and
about vision loss. If the group doesn't do this, then it
is not fulfilling its function of support.


The most successful support groups are both up
close and personal. If you felt this personal welcome
when you joined your support group, you can help
perpetuate the tradition for other new members to the
group. The following stories were fairly typical of the
ones I heard from persons who were content with
their membership in a support group.


* I didn't join a group for about a year after my initial
vision loss. I just didn't feel ready. My worker from the
CNIB had encouraged me to join, but it wasn't until
another member of the group started phoning me
that I actually attended my first meeting. He made me
feel very welcome, and after that, would phone me if I
missed a meeting, just to let me know what had
happened. It took a while before I really felt


78



comfortable with the group, but now I try to do the
same for other new members as my friend did for me.


* It took me about two years before I even admitted I
had a vision problem and could go to a meeting.
During that time, one of the members would call me
every so often to let me know what was going on.
There was no pressure, just the gentle reminder that I
was always welcome at their meetings. When I finally
did go, I wondered what had taken me so long. Now I
am a leader of a support group myself.


* I knew there was a support group in town, but the
thought of walking into a room full of strangers was
quite frightening. It wasn't until a neighbour suggested
that she go with me, that I took the plunge.
Now I rarely miss a meeting.


Many towns and cities across the country are home
to support groups for those with vision loss. If you are
unable to find one in your area, contact your nearest
CNIB office. They will either give you the appropriate
information, or perhaps assist you in starting a new
support group.


The CNIB, or Canadian National Institute for the
Blind, was established in 1918. It is a private agency
with a national base and provides services to over
95,000 clients. The CNIB has district centres in most
major cities across Canada. A wide range of services


79



are provided - counselling, rehabilitation and
mobility training. Some centres offer Braille lessons
and computer courses. Some offices maintain a
children's area and lend toys designed for blind and
visually impaired children. There is an extensive
national tape and Braille lending library. In Alberta,
there is a province wide network of support groups
for seniors with vision loss. Many offices keep a
collection of low vision aides and have information
on high technical assistive devices and computer
programs. Staff members at CNIB are well qualified
to answer most questions asked by those who face
vision loss. The CNIB is recognized world wide for its
progressive approach in the field of vision loss. It is
an excellent contact when support of a practical
nature is required.


* CANES AND THE CANINE CONNECTION *


Guide dogs and white canes are also a form of support.
Surprisingly, only a small percentage of people
who could benefit from a white cane actually come
through the doors of CNIB to ask for one. More often than not, it is the counsellor who suggests the cane.
This gentle persistence sometimes even involves
physically placing the cane in the client's hand. The
white cane is officially a symbol of blindness, courage
and an independent spirit. For many beginning
white cane users, this definition does not extend


80
beyond the initial word 'blindness'. They feel
awkward, clumsy, obvious, and disabled with a cane
in their hands. It is usually only after mobility training,
and as proficiency improves, that the cane becomes
a more useful support tool. One man described his
experience this way.


I was totally without sight when I started using my
white cane. For me, it was like the first flight from the
nest. It was like opening that cage door to freedom. I
really felt a sense of freedom to be able to get out
again.


Guide dogs are different. They are intelligent, living,
breathing creatures. You can interact with a dog,
whereas it is impossible to interact with a stick. On
the other side of the coin, you don't have to feed and
pick up after a cane!


Most new guide dog owners have already mastered
the technique of using a white cane. In fact, this is
most often a prerequisite for application to a guide
dog training school. It is a fairly obvious prerequisite
as most of the skills used with a guide dog are the
same skills required when using a white cane. The
subsequent transition to handling a guide dog is then
made that much easier. The training at the guide dog
school is intensive, and the new owners, in nearly
100% of cases, emerge from the school with a new
sense of confidence.


81



Greg, of Calgary, said that his dog, Pecos, had given
him freedom, friendship and fitness. These three
words were constant in the comments I heard from
the guide dog users with whom I spoke. However,
not all comments were as profound as this one.


* Pat was walking down the street with her guide
dog, Pedersen, when a small voice piped up behind
her. "Look, Mommy. There's a Golden Receiver!"


* A man in a store spotted a Black Lab in harness.
His question to the owner showed a few gaps in his
knowledge of the blind community and the white
cane as its symbol. He commented, "I thought all
guide dogs were white?"


* A certain young man, after transferring from a white
cane to a guide dog, said, "I don't think people look
at me so strangely now when I walk down the street
and talk to my dog."


* One young man had just returned to the city with his
first guide dog. I'm sure the following comment was
not included in his original application for the dog.
When I asked for his thoughts, his response was
immediate. "My dog is a great way to pick up chicks!"


* Then there is my personal favourite. Six year old
Seltic lives in the same house as her grandmother
who now has a second guide dog. Seltic was asked



82



how things would be different if her grandma could
see. "Well," she responded thoughtfully. "At least
there wouldn't be so much dog hair around the
house!"


Although guide dogs are not for everyone, for those
who choose them, they are a very positive support in
leading an independent life. Approximately one percent
of CNIB clients are guide dog users. Information
about guide dog training schools is available from
CNIB offices.


*** BRAILLE ***


Approximately 15% of CNIB clients read Braille.
Braille is a touch system of reading and writing. The
letters of the alphabet are presented in a series of six
raised dots arranged in two vertical rows. These six
dots are called a cell, and specific combinations and
positioning of the dots represent each letter. Braille
writing can be done with a brailler, or a slate and a stylus.


Learning to use Braille is much like learning to use
any second language. A lot depends on one's desire
to learn and the value one places on the finished
task. If the end result is valued and seen as important,
more effort will be expended in achieving it. As
with other learning, the age of the learner plays an


83



important role. Brandon (see Chapter 6), was
genuinely amused when I told him of my difficulties
with my first Braille lessons. Brandon had taken his
first Braille lessons in his early school years, and
now at age twelve, is quite proficient. I am on the
down side of the learning curve, and imagine that I
will be struggling to decipher the little dots for some
time yet to come.


Braille is a tactile language. It is more easily learned
by sensitive fingers. It is not a spoken language, but
one used for reading and writing. Braille symbols are
now used on technical assistive devices for the blind.
For instance, on a Braille and Speak, braille letters
can be typed in and audibly repeated to the user.


*** TECHNOLOGY ***


Technology has progressed at an amazing rate in
many areas, and the field of optical assistive devices
has been no exception. Computer technology has
made dramatic progress in even the past few years.
A blind person may type, print or braille, into a
computer and have this read back either letter by
letter, or word by word. Printed material can be fed
onto a scanner and the computer operator can
choose from a selection of voices to have the
material read back. The voice can be adjusted to the
preferred speed or volume. Stops and starts on the


84
printed page are also possible. As well as the voice
program, large print programs are available.


Other supports for visually impaired persons include
a variety of magnifiers. There are almost too many
magnifiers to count - hand held magnifiers, magnifiers
with lights, magnifiers with automatic focus,
magnifiers with light adjustment, pocket sized magnifiers,
and those which are as large as your television
screen. There are talking watches, clocks,
weigh scales and date books. There are large print
playing cards and bingo cards. There are CCTV
readers (Closed Circuit Television Readers)
marketed by a variety of manufacturers. If you take
the time to investigate, there will be something to
support you in your particular degree of vision loss. It
will not bring back your eyesight, but in these days of
modern technology, most people are able to find
some device or program to assist with independent
daily living.


*** THE VITAL LINK ***


So, there you have it - people, technology and you.
Yes, you! You are the vital link. You are the one who
must locate both the people and the technology and
then decide how to use them. Neither will be a support
for you unless you choose to make them so.


85



CHAPTER 6 LIFE GOES ON


In three words, I can sum up everything I know
about life. It goes on.

Robert Frost


It was October, 1989 when Donna and Darrel became
proud parents for the second time around.
Their daughter, Alisha, had been born two years
earlier. Now they had a son to add to the family unit,
and they were delighted. They named their new son,
Brandon.


The first days home from the hospital were a flurry of
excitement and activity. Visitors came and went, baby
clothes were washed, folded and sorted, and night
time feedings once again became part of the
household routine. The new baby brought back
memories of Alisha as a newborn. There were many
similarities, but Donna also noticed that this baby did
not respond to numerous stimuli in the same way as
her first child. Donna knew that all infants were


86
different and she tried not to make comparisons.
Still the differences between the two babies were
both puzzling and even a little disturbing.


I would go in to change him at night. You know how
most people squint their eyes up when the light is
suddenly turned on? Well Brandon never did. He
was always just awake, with his eyes wide open.


He loved the swing, but he didn't look around a lot.
Loud noises would startle him, and he wasn't
especially interested in toys that were just for
holding. That Christmas we noticed that Brandon
didn't watch the coloured lights and that his eyes
didn't follow the movement of toys that we held in
front of him.


Donna decided to mention their concerns to the
health nurse at Brandon's three month check up.
When Brandon's eyes didn't respond to the little
flashlight test, the nurse recommended that Donna
and Darrel have Brandon checked by a doctor.


The family physician confirmed that there was definitely
something wrong but added that because Brandon's
eyes were travelling together, he was not blind.
It was a huge relief. Something was wrong as Donna and Darrel had suspected, but they could fix it.
Everything was going to be all right!


87



The family doctor had recommended a specialist, so
that was the next step. Donna and Darrel were totally
unprepared for this doctor's diagnosis. The specialist
declared that Brandon was blind. There was nothing
that could be done to correct the problem. Through a
daze of disbelief, Donna and Darrel heard the name
of Brandon's eye condition, Leber's congenital
amaurosis. They listened to the explanation of what it
meant. Donna recalled their feelings.


It was a really hard adjustment. First we were told
that Brandon was not blind. Then we were told that
he was. Brandon's eye condition was genetic, but we
had never heard of anyone who had had it before.


At this point in time, Donna and Darrel had not
known anyone who had experienced vision loss.
The thought of blindness was totally new to them,
and they had no concept of how their lives would
change, or of how Brandon would be able to cope as
a non-sighted child. It was a confusing time.
Brandon was put through a series of tests which
merely served to confirm the cause of his blindness.
Brandon was not quite six months old.


Donna remembers coming home at night, lying
awake in bed, gazing at the ceiling in the dark, wondering
what the future would hold for Brandon. She
wondered how he would be able to cope with the
everyday things of life - eating, dressing himself,


88
playing, learning. She wondered how she and Darrel
would be able to help him.


I didn't know how it was going to work out. Our whole
concept of life is sight, and Brandon couldn't see.


Everyone in Brandon's family was affected by what
was happening, but because of their limited experience
with blindness, there was confusion in their
expectations for his future. It was a stroke of good
fortune that Donna's sister thought of contacting the
CNIB. A worker travelled to their rural community and
met with the whole family. Donna spoke to me about
that meeting.


We talked to the worker at CNIB, and he was
excellent. The reason that Brandon is the way he is
now is because of this gentleman. He explained
what it was like living with a visually impaired or blind
person. The one thing he said to all of us was that the
worst thing we could do to Brandon was to feel sorry
for him.


The case worker allayed the family fears of having to
send Brandon away to a special school for the blind.
He told them that this archaic philosophy was a thing
of the past. Brandon would be able to attend a
regular school in a regular classroom, just as Alisha
would.


89



It was probably after this meeting that Darrel started
to come to terms with Brandon's vision impairment.
His first reaction had been both shock and surprise.


At first I had wondered if there was any possibility
that anything could be done. Later on we found out
that there was nothing that we could do about it, so
the only thing we could do was to accept it and move
forward with it. So that's what we've done. I felt that
the best thing we could do was to move forward, get
whatever it was that he needed or could be available
for him, and have him move forward. It's no good
standing there and whining and crying about it. We
just had to get going and move forward.


The case worker also explained the importance of
tactile experience in the early learning stages for a
blind person. Donna remembers his advice well.


He told us that if Brandon wanted to touch anything,
we should let him touch it, just as long as he wasn't
going to get hurt. So, that's what we did. The worker
brought suitcases of toys for Brandon to play with.
One time he brought boxes and boxes of those little
plastic balls. We set up a swimming pool, complete
with a slide, in our living room. We filled the pool with
the plastic balls and that was Brandon's fun.


90



If Brandon wanted to listen to a special kind of music
on the stereo, that's what he did. As for toys, anything
noisy and that moved, were ones we chose for him. Feely shirts, feely toys - that's what his life has
been - anything different that he could touch or hear
or smell.


Donna and Darrel learned that having a blind child at
home meant that they had to be more creative in their
approach. They encouraged Brandon to explore and
touch everything that they could possibly think of.


The worker had told us to let Brandon experience
anything, so we did. Brandon used to love to play in
the toilet, so we let him. We made the downstairs
toilet off limits to anyone except Brandon. It was his
play room.


Eating jello was interesting. He had it everywhere,
because he had to feel it before he ate it. It was all
very different.


Alisha was Brandon's playmate at home. She also
played with Brandon's new toys. She loved playing
with the plastic balls in the living room, and a
favourite game was splashing water around in the
kitchen sinks. It was only as Brandon started to walk
that Alisha remembers noticing that there was anything
different about her brother.


91
I know my parents would have told me that Brandon
was blind, and I think I always knew, but I was
probably around four or five when I first really noticed
it. Brandon would bump into things when he was
walking. I knew this was unusual, as I had a friend
with a little brother and he didn't bump into things in
the same way.


Alisha adopted the same matter of fact acceptance of
Brandon's blindness as was demonstrated by her
parents. Apart from Brandon's special toys, with
which both children played, theirs was a normal
happy childhood. At this point, Brandon could see or
sense large shapes of clearly contrasting colours.
This so-called 'facial vision' allowed Brandon to
differentiate between the white walls and dark brown
doors in his home. Brandon had started school
before he, himself, first took notice of his blindness.


It seems to me I've always known, but I think it was
probably when I was in Grade 1, that I started
realizing that I couldn't see and that other people
could. I didn't really notice it in kindergarten, but in
Grade 1 there was more stuff on paper. I had to get
things done separately and no one else did. That
was when I started to figure it out.


School was a whole new ball game for everyone.
The local school had never before accommodated a
blind or visually impaired student, and the admin-


92
istration was concerned about the practical and
financial ramifications for the school. Donna and
Darrel were also placed in a new situation. They
found that they had to be vocal and forceful in
ensuring that the school system was going to meet
Brandon's special needs. This very active involvement
was a new experience for the young parents.
They threaded their way through unfamiliar paper
work and other red tape channels to apply for
educational funding. Darrel remembered some advice
given to them by one of the CNIB counsellors.


This person told us that we would find that we had to
fight more. He said we would just have to dig in and
not accept 'no' for an answer.


Darrel found he could do practically anything when it
came to working for something for Brandon. He was
the trouble shooter. He would talk to anyone and
everyone to get things done.


Everyone was concerned about Brandon's education,
but there were so many aspects to consider his
learning in the classroom, his safety on the
playground and in the hallways, his special need to
use braille and to receive classroom instructions
orally, the opportunity to socialize with his peers.
Donna and Darrel met with the school administration
to work out what would be the best solutions for all
these challenges.


93



Brandon had started learning braille in kindergarten.
While the other children were learning their A,B,C's
on paper, Brandon learned his with braille. Donna
had also taken braille lessons and was amazed at
how quickly Brandon was able to pick up this new
language.


When I took the course, I remember thinking, 'how is
Brandon ever going to learn all this! It's so hard.'
For me it was the whole second language thing with
a lot of new rules. I had to remind myself that
Brandon didn't know anything else. He didn't know
print. It was foreign to us, but Brandon actually picked
up the braille very easily. He had all the braille done,
the contractions and numbers and everything, by
Grade 2. It was mind boggling to us.


While Donna was taking her own braille course, she
learned from the instructor that many blind children
often didn't spell very well. The instructor explained
that for braille users, this was because everything
was contracted. Donna discussed this with Brandon's aide. She didn't want Brandon to be handicapped
by an inability to spell English print.


We decided that Brandon would learn to spell both
ways, Braille and English. That was easier said than
done, because he was basically learning twice.
There was more to his learning than the other kids
had. It was okay, and he came through it, but there


94



were days when I thought, 'why does he have to
know all this?' But he does need to know it. He has
to work harder than anybody else, just to be at the
same spot as his sighted peers. He is fortunate that
he is only visually impaired and not challenged in
any other way.


In the beginning school years, socializing on the
playground was a bit of a problem. If Brandon's aide
or teacher were to accompany him at recess, it would
defeat the purpose. So, fellow students were enlisted
as sighted guides. Brandon had to learn the hard
way that not all of his peers could be trusted with this
responsibility. Donna related an incident when Brandon
was in Grade 2.


He came home from school that day with this huge
goose egg and a note from the teacher. The class
had been going to the gym for an assembly.
Brandon was assigned a sighted guide, but the two
boys didn't get along very well. When they arrived at
the gym entry, this boy purposely led Brandon into
the centre steel beam which separated the double
doors. Brandon's head rammed straight into the
beam.


Donna continued, You get angry, but it's one of those
things where you think, these things are going to
happen, so you have to deal with them. There's no
sense getting mad at this other boy. We just


95
explained to Brandon that he was not to allow that
boy to guide him any more. We told Brandon that if
he didn't feel comfortable with someone guiding him,
it was his responsibility to speak up and say so.


Sometimes it was just an accident. There were times
when the kids would forget that Brandon was blind.
They would all be running, and run Brandon right
into the bleachers or something. They would all see
the bleachers and turn, but Brandon would keep
running.


Sometimes it's good to hear those kind of things,
because it reinforces that Brandon is normal, but at
other times it makes you scared. I would worry that
the same thing might happen when they were
crossing a street. What if there was a car there, and
the other kid stopped and Brandon didn't! They might
be walking side by side, but if Brandon didn't have
his hold on the other kid when he stopped, he might
just keep on walking.


As it is for most students, Brandon's teachers have
played an important role in his learning. Some
teachers have adapted very well to teaching a blind
student. Others have not. Brandon is articulate,
intelligent and has a good memory, but he still needs
to receive classroom instructions orally or in braille.
One of the best years so far for Brandon was the year
of the ant colony. The class had set up an ant colony,



96



and over the course of the year observed and fed the
ants. Brandon got to do everything, including cutting
up the apple pieces for the ants. He passed out
pencils and collected papers, taking his turn with the
other students. The teacher that year was excellent in
that she spoke everything she wrote on the board.
Brandon always knew exactly where he was at any
given minute of the day. It was a good year.


Until now, Brandon and Alisha have attended the
same schools, and Alisha has learned to keep an
unobtrusive eye on Brandon. This was not so important
in the early years, as Brandon was usually with
his aide. These days, Alisha, as the older sister, feels
a sense of responsibility.


I've always felt protective of Brandon. Sometimes
there are kids who will tease him, especially on the
school bus. That really gets me going. It gets me
really mad.


My friends think that Brandon is pretty cool. I think
they feel protective of Brandon too. They like to ask
questions about him. A lot of people in the hallway
will recognize me as 'Brandon's sister'. I think they
ask me questions because they're scared to ask
Brandon to his face.


Brandon talked about school in the same matter of
fact way as most twelve year olds. He is now in


97
Grade 7, and spoke about the methods he uses for accessing information.


I'm starting to get more into the tape, as the texts are
getting longer, and there's just not enough room for
the braille. I have an aide at school and the teachers
are supposed to give her the material ahead of time.
When they do, she transcribes everything to braille
for me. When they don't, she reads it out to me. I do
my assignments on a brailler, but I give the teachers
a print copy.


Brandon's favourite school subjects are Science,
French and Drama. His least favourite is Math. His
friends, he says, don't seem to care much one way or
the other that he can't see. They treat him as they
would any other person. Brandon talked openly of
school work and school friends, but with a reticence
that is perhaps typical of other boys his age, totally
neglected to mention the first school dance that he
had recently attended.


Twelve years ago, Donna and Darrel had decided to
bring Brandon up as a regular kid in a regular household.
As far as I could see, they have succeeded.
Together, they have achieved an everyday lifestyle
in extraordinary circumstances. This is a remarkable
family. Darrel expressed the family philosophy in the
following way.


98
Our biggest goal was to raise Brandon to be
independent. We had to make sure that everything,
in terms of equipment and assistance, was available
for him. We had to make sure that he had everything
that he needed. Sometimes it took a lot of fighting,
and sometimes it was right there.


In the beginning we had to change our learning.
We had to think of different ways of letting him know
what was dangerous to him, especially falling off
something. It was a lot of moving back and forth to let
him know where things were at. There were some
things he wanted to do, and if we weren't sure how
he could do it, we tried to adapt it. That was learning
for us. In the beginning, we were doing a lot of things
for Brandon, but now as he's older, he knows his way
around, and it's very seldom you have to do anything
for him any more. It's been a learning process for
everybody.


A lot of times I forget he's blind. Sometimes, for
instance, Brandon will be looking for something, and
he'll come to me, and I'll say, 'Well, go have another
look. Maybe you just didn't look in the right spot.'
Then I'll realize that maybe it's lying somewhere
where he can't feel around for it, so I'll go up and tell
him where it's at, so he can get it. But I do forget
sometimes that he can't see.


99
I've had to change a few things in the yard. Now
Brandon can ride his bike up and down the driveway,
and up and down the bridge. (The bridge is a 130
foot wooden ramp that Darrel has built at the front of
the house.) He has that mastered now. I remember
the day I finished building the bridge. Brandon came
riding his bike down it so fast I thought my heart
would stop. Darrel chuckled. I told him if he couldn't
stop and rode through the screen door of the house,
he'd have to replace it himself. He's not scared to do
anything.


Alisha laughed and chimed in, Do you remember the
time when he crashed into the power pole in the yard?


Donna added, And one time he crashed right into the
tree! Brandon went through quite a few bikes. He
often came in with scratches and bruises. He just
loves speed. He's really looking forward to going
downhill skiing with the school next month. I think
he'll love it.


Darrel continued. A lot of parents are amazed at what
he does. They're scared that their own kids might get
hurt and they want to put a metal suit around them.
Brandon has been into everything. Yes, he has burnt
his hand on the stove. He's fallen downstairs and
wiped out on his bike. Once he was bucked off one
of the horses and cracked his collar bone. Actually,


100
I'll never forget that one. We were there but not close
enough to do anything, and I just watched him arc off
into the air and land on the icy ground.


He's done everything, and we've tried not to overprotect
him. He's had his fair share of what other kids
get into, and we've tried to let him. He's pretty well
experienced everything that a sighted kid has experienced.


In the beginning we had to think about a lot of the
things we did. Now we are at the point where we just
do things automatically. Life just carries on.


Brandon told me how he liked to hang out with his
friends. When his friends came to visit, they often
played outside, running and laughing and climbing
the hay bales in the field. When he met his friends in
town, they might go to a movie or watch a video at
someone's house. I heard how Brandon liked Star
Trek, and how he really liked playing computer
games. I watched as Brandon and Darrel did that
father-son jostling thing around the living room. I was
there to see Brandon arm wrestling with his aunt and
his cousins. I watched in awe as he ate a huge bowl
of ice cream. There was nothing out of the ordinary
here, and yet... there was more!


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Although Donna and Darrel had tried to make sure that Brandon didn't miss out on any of the normal
childhood experiences, they could not shield him
from some of the experiences associated with his
blindness. Brandon has had to learn to be independent
in both his actions and his thinking at an earlier
age than his sighted peers. He has had the experience
of learning to use a white cane - a bigger one
every two years or so. He is excited about the
prospect of having his own guide dog - he is not
quite old enough yet. He has learned to use braille.
He has learned to use his mind and his memory so
he doesn't get disorientated. In twelve years, Brandon
has seen more opthamologists and eye
specialists than many of us would see in a lifetime.
He has had cataract surgery. He is a whiz on the
computer and he sees for himself the possibility of
becoming a computer programmer or technical engineer.
He has learned to accept all of the above as
part of an average day and way of life. He has
learned that life goes on, and as it is with most young
people, he has learned to live it in the present.
Brandon's story is not complete. He is, after all, only
twelve years old. Life does go on, and for Brandon,
there is much more to come.


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CHAPTER 7
THE BEST MEDICINE


Learn to laugh. A sense of humour can cure most
of life's ills.


In all areas of life, laughter is the best medicine. It is
the support system that can carry us through nearly
every situation.


Physiologically, laughter enhances our well-being.
Laughter stimulates the release of endorphins into
our system. This chemical reaction really does make
us feel better. Laughter promotes a 'high' that is
similar to the one experienced by runners and other
athletes after physical exertion.


Alternately, when we are angry or upset, our muscles
tense and we tend to expend energy in what is most
often an unproductive way. Unhappy people tend to
eat and sleep poorly, and get sick more frequently.
Most of us experience feelings of anger, sadness,
irritability, even depression, on a short term basis. It
is part of our human nature. It is when we hold on to


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those feelings, that we have a problem.


Perpetually unhappy people often become lonely
people too, as others avoid their company. Laughter,
on the other hand, makes those around us feel good.
It is a contagious condition. If we are able to laugh at
a situation that would otherwise be uncomfortable,
our cheerful reaction will put those around us more at
ease.


Sometimes it is difficult to see humour in a situation,
but if the ability to see humour does not come naturally,
it is something that can be learned. When you
look for the lighter side of life, you will be surprised at
how often you will find it. If you do this consistently,
the habit will soon become part of your make-up.


While all this holds true for life in general, it is even
more important to consider this philosophy when it
comes to living life as a blind or visually impaired
person. I think this is so because when we live with a
vision impairment, we are far more likely to get
ourselves into either embarrassing or uncomfortable
situations. There are far more opportunities for
laughter!


Many of us encounter vision loss during our adult
years, and at that point need to learn new skills.
Have you ever watched a toddler learning to walk, or
listened to a baby's first words? Are you, in fact,

104


smiling now as you recall your own youngster's first
steps and tumbles? Do you remember your baby's
first words, words which were likely incomprehensible
to anyone except to you, the doting parent?
Learning new skills often involves so called
mistakes, or as I prefer to phrase it, opportunities for
new learning. If we are able to view these 'mistakes'
as part of the learning process, we may also view
them as opportunities to find humour.


Becoming visually impaired when you are an adult
does require learning new skills, and it is obvious
that there are going to be some stumbling blocks
along the way. We, who to this point have been
competent and capable, now find ourselves on unfamiliar
ground. Learning to laugh at some of the
situations we encounter could well enable us to continue
this learning process with a more positive
attitude.


When it comes to the use of a white cane, nearly
everyone with whom I spoke, had a story to tell. Most
of these anecdotes were taken from the learning
stage of the use of the cane. Nearly all were told to
me with great humour. I am sure that white cane
users will be able to identify with some of the
following.


* I spent the first year with my white cane shopping
for purses. I didn't buy a purse unless it was big


105
enough to hold my folded up white cane. Obviously, I
didn't use my cane much, but I had a great collection
of purses.


* I went through eighteen canes in my first year. Most
of them were legitimate losses. Some were just worn
out, and some were the hazards of mobility - fences,
sewer drains and the like. I remember coming home
one day. I was quite close to my house, when the tip
of my cane found the perfect slot between the grates
on the sewer drain. Down she went, and that was the
end of another one!


* I was on my way to the dentist. On the elevator, my
companion was a shorter, elderly woman. She was
very helpful, friendly and chatty. In fact, when the
elevator reached my floor, I felt I could hardly interrupt
her chatter without appearing to be rude. As I
was gradually easing my cane forward to step from
the elevator, the doors slid closed. I knew immediately
that the lower part of my cane had been caught
by the closing doors. Not only that, the doors didn't
re-open as is usually the case.


My elevator companion panicked and, helpful to the
core, began to pull on the handle of my cane. It was
of the fold up variety, and the only thing that
happened was that the inside elastic started to
stretch. All I wanted her to do was to press the 'door
open' button, but she just kept pulling on my cane.


106



Finally, someone in the hall outside the elevator saw
the end of my white cane sticking out, and pressed
the button from there. I'm not sure what would have
happened had the elevator actually started to ascend
again.


* I like to dream. I dream in colour and twenty-twenty
vision. In fact, I would be sad if I ever lost the images
in my dreams. I hope I will always be able to have
sight in my dreams. Initially, I dreamt only as a
sighted person, and there were no blindness related issues in my dreams at all. Then bit by bit, some
aspects of my blindness crept in. I remember one of
the first times this happened. I dreamed I had lost my
white cane, and I was walking down the street
looking for my own white cane that I had lost. Now I
ask you, how ironic is that? A blind man, behaving
like a sighted person, and looking for a lost white
cane!


* I remember my very first experience with the white
cane. I went to the CNIB and asked for one. They
were hesitant about giving it to me without any
training, but I persisted. That same day they gave me
a quick lesson around the building. It was a breeze,
up and down the hallway, and around the auditorium.
I had no sight at all at this time, but inside the
building it was not hard to navigate when I had a wall
on each side of the hallway.


107
When I got home, I thought I would take a quick
cruise around the block. Well, I made it the first
stretch down to the corner, made the turn, but
wouldn't you know it, I ended up in the back alley
and got myself totally turned around. It was winter
and there weren't too many landmarks. Instead of
doing the sensible and proper thing, I put both my
arms up and out in front of me like Herman Munster
and started staggering around in the alley.


To this day I am not sure what made me stop in my
tracks at this one point, but I did. As I gently eased my
nose forward, I found that my face was centimetres
away from being stuck to an icy power pole. My arms
were stretched out on either side of it. Funny in
retrospect, but I think I might not have laughed so
hard had I broken my nose against the power pole....


* It was a Saturday, and I had been working overtime
at the office. I lived only ten blocks away, so I had
decided to walk home. On my route, there was a
Safeway store. It was across an intersection and then
there was a bit of a driveway. I was walking with my
cane, back and forth in front of me, when suddenly it
hit some metal and went clunk!


I couldn't budge my cane. It was stuck. The next thing
I knew it started moving away from me. My hand was
still on the cane, but I could feel it moving away from
me towards the busier street. I thought to myself, 'I'm


108



not hanging on to this cane and being dragged down
the street,' so I let go of it.


I didn't hear it fall or anything. I stood there and wondered
what to do next. My mobility instructor had
never told me what to do if someone stole my cane.


I contemplated my moves. There were people
coming out of the Safeway store. Should I call out
and let them know that I was blind and ask for their help? Perhaps I should try to walk the two blocks
back to the office and pick up a replacement cane?


I was still standing there thinking of all this, when a
teenage boy came running up behind me. In an
excited voice, he called out, "Mister, mister, here's
your cane. I saw the whole thing!"


Apparently what had happened was that my cane
had got stuck in the back part of a car bumper, and
the driver, being quite oblivious to this, had driven
away. The young man had chased the car down the
street until a few blocks further on, the cane had
dislodged. The teenager had scooped it up, and
brought it back to me. I thanked him and continued
on my way. In my imagination, I can still see my cane
sticking out of the bumper of that car!



109



It's not just the white cane that provides an opportunity
for bizarre or unusual things to happen. As I
met with various groups of blind and visually impaired
people, I often found my sides to be nearly
splitting with laughter at the stories that were shared.
Many were tales of situations that had evolved
because of limited vision. Sometimes the humour of
the situation came about as the visually impaired
person tried to fake being someone with sight. Many
were situations that could only be appreciated for
their humour in retrospect.


* I remember going on a date. This was when I was
in high school. I had limited vision, but was still trying
to present myself as a sighted person. When we
arrived at the theatre, I asked my date if she wanted
any popcorn or pop. She declined, and we went in to
sit down. Just as the movie was starting, she
changed her mind. Dutifully I got up and went back to
the foyer to buy the popcorn and pop. With the
goodies in my hands I went back inside the theatre.
As I stepped inside, the door closed behind me, and
everything was totally black. I stood there and
thought to myself, 'How will I find her again? How will
I explain at the end of the movie, that I couldn't find
my way back to our seats? I can't stand back here for
the whole movie!'


Fortunately for me there was a bright day scene in
the movie, so I started walking forward. As I passed


110



our seats, my date saw me, and called out, so it did
all work out fine.


* I had a friend in high school who always wore a
lime green sweater and faded blue jeans. One noon
hour as I was walking down the hallway, I saw him
leaning against the pop machine. I rolled up my
scribbler, and as I walked by gave him a friendly but
hefty jab with it in the stomach. He tumbled and
sprawled on the floor. As I looked down, I realized my
mistake. This wasn't my friend at all, but fortunately I
was bigger than this fellow, so I just apologized and
went on my way. I think he was somewhat surprised!


* I came out of the grocery store, hopped into the
passenger seat of the van and, talking all the while,
arranged the plastic shopping bags around my feet. I
was quite surprised when I looked up to find that the
driver was not my husband. With my limited vision, I
had jumped into the wrong van. Thank goodness I
could see enough to know that I was sitting next to
the wrong man. With as much aplomb as I could
muster, I gathered my shopping bags together again,
wished the gentleman a good day, and alighted from
the van. I had been surprised, but I don't think I was
nearly as surprised as the driver!


* I had decided that as my husband was going to be
a little late coming home from work, I would do the
barbeque myself. I had prepared all the salads and


111
the meat was marinated. I stepped out onto the deck,
and felt my way to the barbeque. Now where was
that barbeque cover? I knew that my husband had
bought a new one, but where was it?


I searched everywhere - hands and knees over the
deck, and even in the back yard. Nothing! Well, it
was a windy day, so I guessed that it had just blown away.


I made my way back to the barbeque, turned it on to
warm it up, then went back inside to get the meat.
When I came back out the door, the smell was
horrific. I knew I had discovered the missing plastic
cover. It had been windy that morning, and my husband
had put the cover inside the metal lid to stop it
from blowing away. Now, as I lifted the lid, bits of
burnt plastic floated into the early evening air.


It was at this point in the drama that my husband
came home. Through gulping sobs I managed to
gasp out what a mess I had made of everything.
Bless his heart! He held me close and whispered,
"It's okay, hon, it could have been worse."


My mind reeled. I could not imagine how this could
have been worse.


"It's okay," he said again. "You know, you could have
burned the steak!"


112
* I was staying with friends and had forgotten to bring
my large digit alarm clock. My guest bed was in the
basement. It was pitch black down there, but I
assured my hosts that I would be fine. They lent me a
clock so I would be able to 'see' the time for our early
morning appointment. I was too proud to admit that I
couldn't see anything on the face of this clock, but as
I was habitually an early riser, I thanked them and
told them I would see them in the morning.


I was exhausted and went straight to sleep, waking
some time later to the noise of footsteps on the main
floor. 'It must be morning,' I thought. I gazed pointlessly
at the little clock they had given me. No clues
there, but I might as well get up.

The guest bathroom was also downstairs, so I
showered, shampooed my hair, dressed for my
appointment, and packed my suitcase. Then I
paused. It was very quiet upstairs. Perhaps they were
eating breakfast.


You have guessed the rest of the story, I know.
When I ventured upstairs, it was pitch black up there
too. No one was up. I found the kitchen clock, whose
numbers I could make out. Four o'clock. It was four
o'clock in the morning!


113
I didn't tell my hosts of my goof, but my support group
had a good laugh, and my husband is buying me a
talking watch for Christmas.


* Have you ever had horseradish on your baked
potato? I have, and I don't recommend it! However, in
a dimly lit restaurant when the condiments were
passed around, I was too proud to admit my inability
to distinguish between them. As I took my first
mouthful, I realized my error. It is the kind of mistake
you will only make once. Now I either ask, or take a
dab of butter!


* My daughter and I were visiting my distant but very
dignified aunt. It was one of those occasions where
one needed to practise using all the social graces. I
had not seen this aunt for many years and rather
than go through complicated explanations, had
decided that for the short duration of this visit, I would
bluff my way as a sighted person.


It was time for afternoon tea, and the cups and
saucers were passed around. The delicate sugar
bowl was passed next, and I guess I can only be
thankful that the spoon was also small and delicate.
With great care, I dipped the spoon, and carefully
poured the sugar onto the table next to my cup. I was
oblivious, but my daughter watched my actions in
stunned silence.


114



Mercifully, she waited until the visit was over before
she described to me what I had done. As we giggled
hysterically, we decided that a policy of honesty
about my vision loss would be less embarrassing
than the little pile of sugar I had left on the coffee
table.


There are stories galore, and if any of the above
have brought a smile to your lips, I hope that you will
feel more comfortable in sharing some of your own
tales. Practise looking for the lighter side of life. Your
sense of humour is a valuable tool. Learn to use it.


The former have all been true stories, but what of
jokes that are told at the expense of the blind? When
is it appropriate to laugh? For me, the bottom line is
that I laugh when I think it is funny, and most times
that depends more on my mood at the time, rather
than on the quality of the joke itself. Let me tell you
this little story about myself, and a joke that was told
to me, along with my reaction to it.


I had been staying away from home. The support that
I had anticipated would be there for me was
unavailable. I was alone, and practically everything
that could go wrong did. I got lost in the street; I was
disorientated inside the hotel; I had difficulty with the
buffet breakfast; I greeted plants in the hallway, and
bumped into guests in the lobby. It was like being at
the base camp of vision loss all over again. I had a


115
pretty miserable three days.


However, now that my business was over, I was on
my way to the airport. My cab driver was friendly and
chatty, but my mood was still glum and I was feeling
sorry for myself. I was barely paying attention, when,
seemingly out of the blue, my driver turned to me with
his joke.


Three blondes walked into a building. Significant
pause. You'd think that one of them would have seen
it!


I looked at my driver in disbelief. Which part of my
person had he failed to notice. My hair was distinctly
blond tipped, and my white cane, which I had used to
enter his cab, was folded on my lap. Was this a
blonde joke, or a blind joke? Either way, I found it to
be in poor taste, and was further unimpressed when
my driver, taking my silence as an inability to see the
humour, proceeded to explain the joke more fully.


This is not the end of the story. We arrived at the
airport terminal, and I asked the driver to let me out
precisely at the door. I had not been to this particular
airport before, but reassured that I was going to be let
off at the door, I felt I could manage. When we pulled
up, I paid my fare, stretched out my cane, and with
luggage in hand, walked straight into the side of the
building! Where was the door? I tried again a few


116
steps in either direction. No door! Totally confused by
now, I did a couple of pivots with my cane. Suddenly I
heard the swoosh of an automatic door some twenty
feet to my left. My driver had not understood that the
'precisely at the door' of the sighted world is not the
same thing as the 'precisely at the door' of the vision
impaired.


As I set off in the direction of the sound, I nearly
started to laugh aloud. I kept remembering my driver's
joke. I hadn't heard him pull away from the curb,
and I wondered if he saw the double humour of the
situation. Was he, too, remembering his joke as he
watched me re-enact it right in front of him just
moments after the telling? My mood lightened. The
joke at which I had initially scowled, now had me
smiling all the way to the ticket counter.


Share your stories and your jokes with others. We all
laugh more in the company of others, as laughter
shared is laughter doubled. Try not to take things too
personally. I am quite sure that my cab driver did not
intend to insult me with his reference to either my
blond hair or my white cane. It was just a funny story.
We can learn to handle many of life's ills with greater
ease, if we approach them with a sense of humour.


Did you know that being blind actually gives you a
crack at immortality? When it comes time to kick the
bucket, there's a good chance you may miss!


117
CHAPTER 8
READY TO ROLL


You know you're over the hill when someone says
'surfing', and you think of sand and waves.


The seniors I spoke with are not over the hill, but they
are ready to roll. They are ready to roll into action.
Many have taken computer courses and know what it
means to 'surf the Net'. They use the Internet on a
regular basis. They are excited about innovative
technology and assistive devices for those with
vision loss.


The seniors I spoke with are also involved in their
communities. They volunteer. As much as possible,
they are physically active. Many belong to exercise
groups or are involved with a sports activity or
program. They may have reached some sort of
chronological peak, but for most, it has just been a
brief pause before they roll into action on the next
project.


118



I have chosen to record stories of only two seniors
with vision loss, but I have spoken with many more. I
met some amazing older persons in my travels. They
were people who showed determination, a zest for
life, and a zany sense of humour. I had an incredibly
good time doing the research for this portion of Ex- Sighted, A New Vision. I wish I had the space to
include all the stories I heard, but perhaps that will be
the subject of another book.


Anne


At age 83 years, Anne is recreating herself. Eight
years ago Anne's life changed dramatically. Eight
years ago Anne's husband passed away and Anne
lost her central vision due to macular degeneration.
Now Anne is putting back the pieces and reestablishing
herself in her new life. She is finding out
just who she is and where she stands in her life as a
visually impaired person.


Anne and Keith had been married for forty-six years
when Anne's world turned upside down. The couple
were friends and lovers. They were a team, with one
complementing the other. They were business partners,
working in tandem. They were proud of each
other's accomplishments. Keith was a design engineer,
and Anne had trained as a nurse. They had no
children and as a close-knit twosome, became even


119
more devoted to each other.


In the beginning years of their marriage, Anne
worked in a large city hospital. Later, when an opportunity
arose to work in a busy doctor's office, she
jumped at the chance, and worked there for eighteen
years. In the meantime, Keith was pursuing a successful
engineering career. However, the advent of
computers soon beckoned him in a new direction,
and Keith was one of the first in the city to get involved
in software design. He began an independent
business, and when Anne left the doctor's office, she
became a dedicated colleague in this new venture.


Anne and Keith enjoyed the benefits and the hard
work of a home based business. They enjoyed an
active social life with other professional friends. They
were interested in local and national political issues
and kept abreast of global events. They loved to
travel. They were happy.


The first hint of impending disaster came one bright,
sunny day in July as Anne and Keith were preparing
for a little travel jaunt. Keith was waxing the exterior
of their motorhome, and Anne was polishing. The
sun glinted off the shiny sides of the vehicle. In spite
of the glare, Anne continued working diligently.
When they came inside again, Anne turned on the
television set, and was startled to find that she
couldn't see the screen.


120
At first she thought of a detached retina, and immediately
sought medical attention. She soon discovered
that her problem was macular degeneration, and the
lost eyesight was not going to return. The condition
was irreversible.


The doctor told me there was nothing he could do. I
should go home and wait for the other eye to go. I
was angry. I thought, I'm in the nursing profession,
and I know you can do so many things. Doctors can
do heart transplants, yet they can't do anything for my
eyes! I was furious that there was nothing they could
do for me. I couldn't believe that there was nothing
that could be done. I was very distraught.


As the news of her vision loss was beginning to sink
in, Anne was hit with another blow. Her husband,
who had not been well for the past year, suddenly
took a turn for the worse. Within a week he was gone
and Anne was alone. The enormity of the loss was
almost more than she could bear, and Anne slid into
a deep depression.


Anne's aloneness was compounded by the isolation
brought about by her vision loss. At her last visit to
the specialist, the doctor had told her that the first
year would be the worst. This was prophetic, but the
doctor could not have predicted how particularly true
this would be in Anne's situation. Anne was
experiencing a double loss and the subsequent grief


121
associated with each. She was devastated. It was
only through sheer force of will that she managed to
get through each day.


It was at this point that Anne made her first contact
with the CNIB. She could still see a little bit of print,
so it was suggested that she try magnifiers for
reading. After a short time, they didn't work well
enough for her, so Anne progressed to a CCTV
Reader (Closed Circuit TV Reader).


What really helped me was my CCTV Reader. It was
a tremendous boon to me. I could read all my bank
statements, write my own cheques, and stay independent.
Staying independent was very important to me.


However, Anne's doctor had been right. The first year
was the hardest. Every day was a challenge. Anne
struggled to deal with the accumulated paper work
associated with her husband's death and the closing
of the home based business. A rehabilitation worker
from CNIB visited and helped her set up her home so
she could cope with daily living. The worker marked
the dials on her radio, stove, microwave and other
appliances with tactile bubbles. Each morning, Anne
would set herself small tasks and goals for the day.


122
Today, I will walk around the block.
Today, I will buy groceries.
Today, I will go to the bank.
Today, I will ride the bus downtown.


As Anne met these small practical challenges, she
began to heal. The rehabilitation worker encouraged
her to continue practising her computer skills. In the
past, Keith had always been on hand to help her with
these. Now she was on her own. She was more than
a little apprehensive. Anne felt alone and blind, but
she stuck to her motto of 'one day at a time'.


For possibly the first year of her vision loss, Anne felt
herself caught between a rock and a hard place.
She was alone, yet she felt unable to reach out to
other people. She was uncomfortable around blind
and visually impaired people, as being with them
identified her as being visually impaired as well. She felt inadequate around her sighted friends for she
was very aware of what she was missing and of the
things she could no longer do. Any sort of social mix
seemed to be a traumatic experience.


At the end of the year, Anne finally felt ready to join a
support group at CNIB. It was a beginning but Anne
had to learn to be more comfortable in this social
situation. By nature she was a shy person. She found
she needed to 'psych herself up' when she went out.
It was hard being blind, and it was hard being alone.


123
But the turn around had begun. Anne began to rebuild.
She talked about it as 'recreating' her life. She
would build on the foundation of her past to create,
her future. She wanted to go on with her life.


Anne became involved with the Seniors With Vision
Loss Support Group, eventually facilitating one such
group. In that capacity, she was very active in finding
community resource people to speak at support
group meetings. As a CNIB client representative she
has spoken in public forums and to the media. She
has been on television three times and has been
interviewed several times by members of the press.
She has travelled from Alberta to Toronto and Ottawa
with a CNIB group. As a client representative for
seniors, she has spoken at Camp Jo1. During the
International Year of the Older Person Anne even
had her picture taken with Jean Chretien.


In the past eight years, Anne has become involved
with various groups, both in the CNIB and in the
community at large. She stays physically active, and
has been a facilitator of an exercise group for seniors
with vision loss. She has taken several computer
courses and uses a large print program on her home
computer. She is still keenly interested in global
affairs, and is investigating a web site that will give
her access to this type of information.


1 Lake Joseph is a CNIB retreat and conference centre in
Ontario.


124
Currently, Anne lives independently, and works hard
to maintain that status. She has an extended family,
and receives good support from a special nephew
and his wife. Anne's brother, Don, has been particularly
instrumental in inspiring her enthusiasm for
life, and in igniting her curiosity about computers and
other assistive devices. Anne has made a conscious
effort to accept her life as a visually impaired person,
and has made a determined decision to go forward
with it.


I think it's all a matter of attitude. You need to accept
that you're blind, that you're not going to be able to
do all the things that you did when you were sighted.
You need to adapt to the change in your life. I think
you learn all of that, but the big thing is accepting that
you're blind, and trying to get over your grieving. I
have learned to adjust and I've learned to
accomplish. Since I've been blind, I've learned to do
things that I may not have done had I still been able
to see. Life would have been very different for me if it
had not been for what happened eight years ago.


Nowadays, Anne is up front about her visual problems
though she does not emphasize her disability.
If she needs assistance, she asks for it. If she doesn't,
she bluffs. She feels comfortable in social situations
with either blind or sighted people. She continues to
set personal goals for herself. Her latest challenge is
learning to play bridge with large print cards.


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Anne is enthusiastic about life. She is energetic and
happy. She is recreating herself. She is becoming
the kind of person she would like to be both in spite
of, and because of, her vision disability. Anne is
going forward with her life.


Peggy


Peggy was born in Alberta and grew up in an idyllic
setting north of Edmonton. Her father was a fur
farmer, and Peggy loved the freedom afforded by this
lifestyle. She spent many hours roaming the hills,
lakes, and trees with her brother and sisters. On cold
winter nights they sat inside by a blazing fire. The
family relocation from city to country had averted the
brunt of the Depression, and Peggy remembers her
childhood as being carefree and happy.


In her late teens Peggy met a young man from the
same district. She and Jim married and had two
sons, but there was a war on in Europe. Jim left for
overseas, and Peggy looked after things on the
home front. When the fighting was over, Jim returned
home, and the family pulled up roots and moved to
another rural community where Jim found work as a
mechanic. Three more children were added to the
family.


126



These were happy and fulfilling years. Peggy was a
full time wife and mother. In the new town, she set out
to meet people and make friends. She had always
had a strong church affiliation, and now she joined
the local United Church. The children were enrolled
in Sunday School, and Peggy began what was to be
a lifetime of volunteering with the church. Over the
years she has been a church elder, and has held
every position that was possible in the church
women's group. As I sat with Peggy in her dining
room, she proudly pointed to a shiny plaque hanging
on the wall. It had been presented to Peggy for her
twenty-three years of service as secretary of the area
presbytery.


Having spent so many busy and active years in
volunteer service in her church and community, it
was quite a blow to Peggy when she came down
with a rare viral infection nearly seven years ago.
The condition, polymyalgia rheumatica, was extremely
painful. The associated muscle deterioration
put an immediate stop to many of Peggy's activities.


Within a few months, the pain was so intense that I
couldn't sleep at night. In the day, I walked with two
canes. I had no strength in my muscles. The doctor
didn't diagnose me right away, because it was such
an unusual condition.


127
When the correct diagnosis was finally made, medication
was prescribed and Peggy began an exercise
program to rebuild weakened muscles. This double
treatment was effective, but unfortunately, there had
been another effect of the debilitating condition.
Over the months, the muscles around Peggy's eyes
had also been weakened, and Peggy noticed
changes in her vision.


It all came on slowly, and at first I didn't realize what
was happening. It was a gradual thing. Then I
noticed that I was seeing my colour television in
black and white. Colours became difficult to distinguish,
and I couldn't see the colour of even the
vegetables on my plate.


Around this time, Peggy also had cataract surgery on
her left eye. She began to notice other changes.
She had trouble with dim lighting. She was having
difficulty reading her hymn book at church. She was
no longer confident driving her car. A trip to the
optometrist confirmed the beginning of wet macular
degeneration. Within the same time frame, a trip to a
city opthamologist revealed a detached retina. At this
date in time, Peggy is not even sure of the order or
progression of events. It just seemed to be one thing
after another.



128



The optometrist told me that the good news was that I
would never be totally blind, but the bad news was
that glasses wouldn't help. He also said I shouldn't
drive any more. I was disappointed with that.


However, Peggy was not defeated by the news. She
began a series of laser treatments to stop the
bleeding in her eyes. Peggy also remembered how
daily physical exercise and medication had restored
her other body muscles. Now she embarked on an
eye exercise program, took vitamin supplements,
and practised using her peripheral vision.


At first when I heard I had macular, I felt a little sorry
for myself. I thought, 'well, I'll just go downstairs and
have a little cry about this.' Instead, I decided, 'Get
up, girl. There's other things you can do!' I didn't tell
people right away. I thought people would think I was
an oddity because I had lost my sight.


The first year was difficult, as Peggy backed off from
doing some of her usual jobs. It was hard admitting
that she couldn't do certain things because she
couldn't see. Because she was still managing and
coping so well, she found that many people didn't
understand the extent and impact of her vision loss.
She was hurt and angered by their reaction. Between
appointments and adjustments, it was nearly
twelve months before she made her first contact with
CNIB.


129



I dragged my heels a bit that first year. There were so
many other things going on. When I went to the CNIB
in the city, they gave me my ID card and my white
cane. I bought a talking watch and a clock with big
letters, and my son bought me a halogen light.


Armed with these devices, Peggy returned home with
a new determination to live a full life as a visually
impaired person. She had a new understanding of
what her life could be like, and she felt ready to
tackle whatever came her way.


I had to swallow a bit of pride when it came to using
the white cane, but I knew it would get me across the
street safely, so I was prepared to use it. I've always
been an independent person, so I think that helped. I
walk everywhere. I always cross at the intersection,
and I always hold my cane high so the motorists can
see it.


The very next week after her visit to CNIB, Peggy
joined a local support group. This support group was
part of an Alberta network of similar groups for
seniors who had experienced vision loss.


It was a hard thing to do, to walk into that new group.
It wasn't so much that it was hard to admit that I had
vision loss, and I did know most of the people in the
group already. It was more that by going to this
group, I was admitting that this was the beginning of


130



a new way of life.


Peggy began attending meetings regularly. She became
an enthusiastic member of the support group,
and six months later was asked to attend a facilitator
training session.


I jumped right in. I felt so good when I went to that
session, I came back home with information just
bubbling out of me.


Since that time, I've had such fun working with
people with vision loss. I slipped right into this new
work of facilitating and being with vision loss people.
I enjoy being with these people more than I do with
sighted people. We have a special feeling for one
another. We enjoy what we see in life. There is a
happiness and a love there that I can't find anywhere
else. It is something that is just deep within me.


At age 81 years, Peggy is a bundle of energy and
enthusiasm. She has continued as a facilitator in the
support group and attends provincial training sessions.
She is a regular visitor to eleven CNIB clients
in the local seniors lodge, and also visits at the local
hospital.


For the past six years, Peggy has worked tirelessly
on behalf of the visually impaired and blind community.
She is a fearless spokesperson for the local


131



support group. She has conferred with the mayor,
town council and the Chamber of Commerce. She
has debated issues such as sidewalk safety and
audible traffic lights. She has worked closely with the
local Lions Club in spearheading a 'Walk for
Independence'. This fund raiser is now held annually
in her community and raises money for the
Seniors With Vision Loss Support Groups in Alberta.
In the first organized walk, in a town of around 6,000,
over $3,000 was raised. Three years later, this
amount was doubled.


Peggy is a very spiritual person and enjoys her
participation in church life. She still occasionally
writes articles for the church newsletter, and one of
her special joys is church camp in the summer. On
those hot July days, Peggy takes delight in jobs like
scooping out the ice cream for the young campers.
She assured me that she could still see well enough
for that.


There have been changes in Peggy's life over the
past seven years. Today, the house that Peggy and
Jim moved into forty-seven years ago, has a few
minor additions. The halogen light holds a prominent
place on the dining room table. A lighted magnifier
sits on the kitchen counter. Beside the large digit
telephone is a black felt marker, and at her bedside
is a clunky blue tape player. There is a pair of good
walking shoes and a folded white cane by the front


132
door. These are the tools that Peggy uses to continue with her active lifestyle.


Peggy has had to learn to adapt her life to accommodate
her vision loss. As a young girl, she could
have spotted a needle in a haystack. In fact, for the
greater part of her adult life, Peggy was blessed with
excellent vision. Peggy has learned to change her
ways, but she hasn't changed herself.


I'm a fighter. I'm a born fighter. I have a strong
spirituality and a closeness to God. I have the
presence of God around me all the time. My faith
keeps me going.


I also have a love of people. I love to talk to people
and I love to listen. I love nature - the lakes and the
hills. I love the night. I'm a bit of a night owl.


Peggy wants to continue doing the things she's doing as long as she is physically able. She doesn't
feel like an eighty year old. She wants to see the rest
of her grandchildren graduate.


Mostly, Peggy would like to educate the people in
her community about the challenges faced by the
blind and visually impaired. She wants to educate
the public as to the significance of the white cane.
She would like to continue as a facilitator for her
support group and attend workshops, particularly


133
those focused on macular degeneration. It is her
hope that the Walk for Independence will continue
and that she will be able to be a part of its organization.
She wants to continue volunteering.


I'm not sad that I'm blind. There is so much to do and
so much to enjoy in life. I do thank God that it's only
vision loss that has affected me. I can cope with that.
I can still hear the birds sing, and hear the little
children laugh. There are so many good things in life.
It seems when you're blind, you have an inner vision.
Everybody is good to me and I try to be gracious and
appreciative.


I didn't know Peggy when she was a youngster or as
a young woman or even in her middle age. Today
Peggy is both a grandmother and a great grandmother.
I first met Peggy six years ago, but I cannot
imagine the Peggy of the past being any different
from the Peggy of today. She is energetic, enthusiastic
and involved with people and life. Peggy is
educating the sighted community simply by the way
in which she lives her life. If you would like to know
more about Grandma Peggy, you can find her on the
Internet at www.cnib.ca


Anne and Peggy are but two people who have encountered
vision loss in their mature years. They are
representative of many seniors who have faced this
life crisis with courage, humour and determination.


134
CHAPTER 9
INSIDE OUT


The good thing about blindness is that we get to
know each other from the inside out.


A new friend taught me this. We had met at a conference
and found we had much in common in the way
we viewed life in our blind and visually impaired
worlds. After the conference, we kept in touch. We
shared confidences and talked about common
experiences and challenges. It was only after some
time had elapsed that I realized that my new friend
had no idea of what I looked like. My friend was
blind, and had no first impressions of my outer self
other than a handshake and our conversation together.


What a gift this is! The inability to see can actually be
used to see more. By getting all the details of the
book cover out of the way, we can delve more deeply
into the contents of the book itself. Instead of dwelling
on the fact that we cannot see the details of another's
face, hair or clothing, we can use our ears, hearts


135
and minds to focus on an inner image. If we care to
use it, this is the gift of inner vision, the gift of insight.


Blind and visually impaired individuals are forced to
look beyond physical appearance. Certainly for the
totally blind, and in many instances for those with low
vision, imperfections of physical appearance are
either not noticed at all, or at the least, become
unimportant. What a different world it might be if
sighted persons were given this same opportunity to
experience meeting someone new without the
benefit, or perhaps I should say, the barrier of sight.
Would it be possible to break down prejudice if we
were unable to see race, age or gender, or would we
merely set new prejudices, judging others by voice
and accent? Prejudice or preference? They are both
responsible for setting the boundaries of human interaction.


What are your first impressions when meeting someone
new? How do you gather information about
someone you meet for the first time? If your vision is
very limited, or if you are totally blind, do you form a
mental image of another person when you converse
for the first time? Have you ever discovered if your
mental image of someone is close to the truth?
When does physical appearance become important
to you, or does it actually cease to matter?



136



These were some of the questions I asked as I prepared to write this chapter. The responses I received
bore a similarity which was not particularly surprising.


* I do picture people. I do develop a picture, but it's
not terribly accurate. Appearance is important, but
physical appearance is no longer really important to
me. It's not an issue with me any more.


* What do I notice about people? Well, I usually
shake hands with people I meet. I notice that sometimes,
they're nervous. Sometimes their hands are
sweaty. Sometimes their hands are really cold or hot.
I notice the temperature. I notice the fleshiness of
their hands. If their hands are fleshy, it may mean that
the person is on the heavy side as well.


* I notice the voice. If the voice is coming from way up
or way down, it suggests the height of the person. I
notice accents. Also the words that people select tell
me a lot about the person. Sometimes I can tell a
mood. I can pick up a tremendous amount from voice

* The tone, the words, how people speak.


* For me, it's personality, and the things that come
with that. A handshake says a lot. I interpret a good
solid handshake as someone who is willing to talk to
me, someone who is a bit outgoing. I was a people
watcher when I could see, so I guess I still wonder if


137



people look like their personality.


* For me it's voice. Voice is one of the first things that
you hear, so I wonder how does this person look in
relation to their voice. I talk on the phone a lot.
When, for instance, I listen to a man with a brusque,
husky voice, I wonder if he is as big as he sounds.
Then you get some voices that are lovely to listen to,
and I wonder if they look anything like they sound.


* I usually try to listen to the voice, but one night I was
watching a talk show on TV. The woman being interviewed
had the most beautiful voice I had ever
heard. I was curious enough to ask my wife what this
person looked like. Apparently she was quite frumpy
in her appearance, and not very attractive at all. I was
very surprised, and even a little disappointed. Since
then I have wondered if I would have noticed her
lovely voice if I had been able to see her first.


* Sometimes I have a memory of a particular cologne
or perfume, and when I smell it again, I wonder if the
wearer looks anything like that other person in my
memory.


* Sometimes I ask people what they look like, but not
always. It depends on how comfortable I feel with that
person. Some people would find the question
intrusive, and with some people, I'm just not interested
in finding out what they look like.



138



* Facial details disappear for me, so I pick up a lot
from the way people move. I am often curious about
age, so movement gives me clues about that. Of
course, I always notice the voice.


* Appearances now don't matter as much as they
used to. I think that most times that's a really good
thing. I can usually perceive shape and size, taller,
thinner, heavier. I don't know why, but I don't think
you need to actually see someone to know how tall
they are. I do notice that. But I do get the perception
that each person is just a person, and I think that's a
good thing about not being able to see.


When a person is unable to see, conversation plays
an important role in the 'getting to know you' phase
of a relationship. Dialogue gives the blind or visually
impaired person important clues about a new
acquaintance. The back and forth banter of the
spoken word etches out the boundaries of the new
relationship.


This kind of verbal exchange is particularly evident
with behaviour related to courtship. The flirtations of
body language and facial expression that are used in
the sighted world need to be translated to flirtatious
dialogue with verbal cues and responses. As is also
the case in the sighted world, some people become
very adept at playing this particular social game.


139
Of course, no matter what is said about the advantages
of learning about inner character first, there are
some distinct disadvantages to being unable to see
the outer appearance. It often pays to have a sense
of humour in this respect.


* I remember visiting Donna after her chemotherapy
treatments. Donna knew that she was terminally ill,
but was still self-conscious about her appearance,
particularly her recent hair loss. She always wore a
wig or scarf.


On the afternoon in question, Donna wasn't feeling
well at all, and our conversation was both emotional
and intense. We spoke of the issues of life and death
that confront us all, and the immediacy of these concerns
to Donna.


It was enough to give anyone a headache, and
Donna moved her hand to touch her head. Horrors!
No wig! Donna was mortified. She moved to cover
her shiny scalp and almost began to weep.


While Donna was concerned about her bare head, I
was still trying to figure out what was wrong. It was at
that point that she realized the absurdity of the situation.
When she explained it to me, we both began to
laugh.


140
In spite of our proximity, my limited vision had made
me unaware that there was anything awry with
Donna's appearance. We had shared only our inner
selves. I am glad that we were able to share laughter
in what turned out to be our last visit together.


Sometimes the humorous aspects of a situation can
only be appreciated in retrospect. I overheard the
following exchange at a support group meeting one
afternoon.


* 'How would you like to go out for coffee some
time?' the young man asked his new acquaintance.


'It's possible,' was the response. Some more idle chit
chat followed.


'So,' continued the young man, 'you sound like a
very nice person. I'll bet you're good looking too. So,
what would you be...in your thirties?'


'Oh no,' said the woman coquettishly. 'You'd have to
go higher than that.'


'What then, your forties? Your voice sounds really
young!'


'Much higher than forties,' the woman answered,
suddenly realizing where the conversation was


141
headed.


'You can't be in your fifties,' said the would be suitor,
also realizing that he had made an error in his previous
estimation of the situation.


'No,' said the woman, a little hesitantly now. 'Actually
I've just turned eighty.'


After a laugh and a giggle from both, they made
arrangements to go out for coffee anyway.


Whether a person looks at blindness and vision impairment
as a gift or as a liability is up to that person
alone. It is a choice. If it is viewed as a liability, it will
become one. If it is viewed as a gift, it will become
one. The decision is the responsibility of each individual.


Norma (see Chapter 4) says this.


I remember when I was younger and able to see, and
how I would often perceive people's ideals by how
they looked. Now when I meet someone and I can't
see them, I really have a sense of them being
human. They are just people. I don't really care if
they are pink or blue or whatever. They are people
just like you and me. Maybe their situation or
economic standing is different than ours, but they still
have the same feelings, thoughts, worries and


142
apprehensions that we do. I think this way of looking
at people is such a good thing. I think it is one of the
real positives of being blind.


What is your choice? If you are blind or visually impaired,
are you willing to accept this gift? Are you
prepared to use your insight to explore the inner nature
of your fellow human beings? The choice is
yours.


A small addendum is necessary here. Just because
we, the blind and visually impaired, are forced to look
beyond the outer appearances to an inner person,
does not mean that the sighted world views us in the
same way. Too often, the image of a white cane, dark
glasses or a dog in harness conveys only the concept
of blindness. Too often, the individual with the
dog, the cane or the glasses is seen only as blind. It
is an interesting reversal of all that I have written at
the beginning of this chapter.


Many of the blind and visually impaired persons with
whom I spoke had observed this disparity. The ways
in which they were identified as blind first and person
second, were various and frequently subtle. The
newly blind seemed to be most sensitive to the
nuances of this behaviour of their sighted counterparts.
Sighted persons who had no previous contact
or experience with vision loss were the most likely to
display inappropriate reactions when first meeting a


143



blind or visually impaired person.


While I am not sure what inferences should be drawn
from these observations, I was impressed that some
blind and visually impaired persons had chosen to
use these reactions as an opportunity to educate and
inform. Instead of being aggravated, irritated and
annoyed by the sighted person's inability to see
beyond their blindness, they reframed the encounter
in a more positive light. They would explain the significance
of the white cane, the importance of the
dark glasses or the purpose of a working guide dog.
Many were very intentional in their responses. Gerry
(see Chapter 10) put it this way.


I feel we are all ambassadors, whether we want to
recognize that title or not. I feel that if I can talk to one
person in a day and leave them with a thought or two
about blindness that they didn't have before, then
that's been a successful day.


144
CHAPTER 10
ONE STEP AT A TIME


When I first met Gerry, I found him to be both an upbeat
and out-going person. It was obvious that Gerry
liked people and that they liked him back. He knew
how to listen and he knew how to talk. He could be
serious when the situation required, but had a lively
sense of humour that readily put others at their ease. He made those around him feel good just by being in
his company.


I would venture to say that if you were to meet Gerry
today, or tomorrow, you would share this same
opinion. But don't be fooled. No, I'm not saying that
Gerry's good nature is a mask or a facade. Gerry's
inner self is as honest and generous as his outer self. Gerry has chosen to approach life in this positive
way. The amazing part is that he has done so in spite
of, or perhaps even because of, his personal journey
into the world of vision loss. Gerry is blind.


Not everyone I have spoken with has wanted me to
record their personal story, but when I asked Gerry if
he was willing to share his story, his answer was very


145
positive. I asked him why he wanted to do this, and
again his response was clear and sure.


I want people to understand what it is like to be blind.
If they could walk for just one day in my shoes, they
would understand, but as that isn't possible, the next
best thing I can do is to tell them. I've never been one
to cry, 'oh poor me, I'm blind', but I would like people
to know and understand what life is like for a blind
person.


So Gerry told me his story, and I hope I have done it
justice in the retelling. It is a story told from the heart,
with no embellishment. It tells of the ups and downs,
the highs and lows. It is a story of fortitude and determination.
It is a story of courage and resolve. It is the
story of one person's endeavour to see the challenges
of life, not as obstacles, but as opportunities.


So, let us start at the beginning. Gerry grew up in
North Battleford, Saskatchewan. He was a middle
child and the only boy. At age six, Gerry was diagnosed
with diabetes. As a youngster, Gerry attended
the local school three blocks away from home. His
mother died when he was eleven. In high school,
Gerry developed an interest in sports, almost to the
exclusion of any academic aspects of the school
program. He was cheerful and energetic, but his life
was relatively aimless and without purpose.



146



One of the most significant events of Gerry's young
life was the onset of his diabetes. Although he didn't
realize it at the time, this diagnosis was to be the first
step in his journey towards a world of darkness.


Gerry has several memories of those early years. He
remembers that it was New Year's Eve, as he lay on
the couch, feeling sicker than a dog, before his
parents took him to the local emergency room. After
the diabetes diagnosis, there followed a lengthy stay
in University Hospital in Saskatoon, where Gerry
learned the art of taking his insulin needle. He remembers
the nasty taste of accidentally biting into a
practice orange which he had injected with water.
He remembers visits from his parents. He remembers
the hospital school. Most of all, he remembers a
fierce, almost overwhelming longing to be back
home with the security of family and familiar surroundings.
Hospitals can be lonely places for little
people.


When Gerry did return home again, life settled into a
regular family routine. There were school friends
during the day, and two sisters at home each night.
There were regular medical appointments. Gerry's
mother usually accompanied him to these. There
was always the constant needle. Gerry cannot even
remember a time in his life without his insulin needle.
But one of the hardest parts for Gerry, as with many
young diabetics with growing appetites, was the strict


147
diet control.


I especially remember being told that I could only eat
certain things, and I could only have so much of a
certain food. I couldn't have sweet things. I remember
going to birthday parties, and somebody's
mother would forget I was diabetic, only to remember
at the last minute and snatch the cake and ice cream
away from in front of me. I remember special days at
school, days like Christmas and Halloween. I took my
own special lunch, but when the cookies were
passed around, I would wonder if I could grab one
and get it down before anyone noticed. Occasionally,
I would cheat and go to the store and buy myself a
chocolate bar.


So, childhood passed into adolescence, and adolescence
into young adulthood. After Grade 12, Gerry
drifted into one job and then another. Sports and the
usual after the game party occupied much of Gerry's
leisure time. Gerry developed both an acceptance of
his condition, and a resolve not to allow it to dictate
his life.


It was never really, 'poor me' or 'why me'. It was just
something that I had. I don't know how consciously I
decided this, but I always had it in the back of my
mind that it was never going to slow me down, or
control me. I was very active in sports, and doing
everything that a quote, unquote normal kid would



148



do. There was just the needle every morning, and the
feeling I got when I needed to eat.


Although Gerry doesn't remember a specific time of
being told of the complications that could develop
with diabetes, he knew what they were.


I remember as a kid, lying in bed at night, and closing
my eyes. I had been told that blindness was one of
the complications. I would close my eyes and think
that this could happen. But then I would open my
eyes, and think, but it'll never happen to me. Maybe
to someone else, but it won't happen to me.


In spite of all of this, blindness when it came, came
swiftly and unexpectedly. It was to be a new battle,
and the struggle was not going to be an easy one.


It was the Spring when Gerry first noticed some disturbing
changes in his eyesight. At first it was night
driving. Playing ball became difficult. Things in general
were fuzzy and less distinct. At this point, Gerry
did not suspect that his diabetes could be the cause
of his diminished vision, but a trip to the eye doctor
told a different story.


The doctor took a picture of my eye, and actually
showed it to me. It looked like a ring of fire with the
flames coming inward. That was, of course, the
bleeding blood vessels. It was kind of a neat picture,


149
but I realized that there was more to it for me than just
changing glasses. It was clear that the diabetic
retinopathy had set in.


Laser treatments followed, and Gerry remained optimistic.
In November, on his 25th birthday, he flew to
Vancouver for surgery. The retinas on both eyes
were partially detached and there was a build up of
scar tissue from the laser treatment. The surgeons
hoped to rectify these problems, and placed a silicone
bubble behind the left retina to hold it in place.
The prognosis was hopeful. Gerry was told that he
should maintain 80% of his vision. But the prognosis
was wrong. By December, Gerry's vision was gone.


I had no idea that my vision was going to be gone
until I woke up that one morning. When I went to bed
that night I could see colours and outlines and
blurred shapes. When I woke up in the morning, it
was total darkness.


I remember getting up and thinking that I maybe
wasn't fully awake. I was blinking and even doing
things like pulling on my eyelids to make sure they
were open. Then I bounced off the dresser and
bounced off the wall and realized something had
happened. I went to the doctor and he said that I was
going to have to get used to life with very little or no
sight.


150
Gerry's world had changed. Overnight he had slipped
from a life of limited vision into one of complete
and absolute darkness.


I realized very quickly how important limited vision is
as compared to no vision at all. For instance, I could
fairly easily pour a cup of coffee with limited vision.
My whole perspective changed, when I realized that I
was doing that the week earlier, but now, suddenly,
the coffee pot seemed hotter, and the diameter of the
cup seemed smaller. Everything had changed. I remember
thinking, well how am I going to shave?
Surprisingly enough, as soon as I started shaving as
a totally blind person, I was much better at it. I was
much more careful. I went a lot slower, thinking that,
boy, this big razor could just slice my head off if I get
going a little too quickly!


There were lots of practical adjustments, some obviously
of more importance than others. At noon, I had
watched Gerry taking his blood sugar levels, and
was amazed at how expertly he got the tiny drop of
blood exactly on his audible counter. He sensed me
watching, grinned and commented, You have no idea
how much practice that took!


In spite of his experience with limited vision, Gerry
had had no mobility training or education in daily
living skills. He learned very early on that he had
great support from both his family and CNIB, but in



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the initial stages of blindness, he knew instinctively
that he needed time to be emotionally and psychologically
ready to accept that help. The day to day
adjustments of life were present in his every waking
moment.


I had trouble getting from the bedroom to the living
room and from the living room to the kitchen. I couldn't walk the twenty steps to the end of my driveway
without getting lost. Getting groceries and food
preparation was a big issue. I felt totally dependent
on the good will of family and friends for all my
needs.


Gerry spent most of that winter in his basement suite.
He spent a lot of time sitting in his kitchen staring at
the floor. He oscillated from being deep in thought, to
a mind set that was totally blank. He felt adrift. He did
what he wanted to do, when he wanted to do it. He
got night and day completely turned around. (Later
on he was to learn that this is not an unusual phenomenon
for the newly blind.) He often slept away
the day and spent the night in mindless activity.


The onset of Gerry's blindness was dramatic, but it
was not an isolated event in his life. His father had
died only a short time before, and other issues also
claimed his attention and concentration. It was a long
winter. Nowadays Gerry is able to look back and
identify many of the emotions that assailed him at



152



that stage of his life.


I think when the finality of it hit home, it was like a kick
in the stomach. At the time I was also dealing with
other emotional issues, particularly the death of my
father.


After my sight went, there were a lot of mixed
emotions. It was very comparable to the grieving
process. I was angry and wondered why did this
have to happen to me. I was frustrated when I knew
that something was right in front of me, yet I couldn't
see it. I was very sad thinking that there were going
to be a lot of things I couldn't do any more. I bargained
with God. You know. God, if you will only give
me a little bit of sight back, I'll do this or quit doing
that or whatever. I went through all the stages of the
grieving process before I took those first few small
initial steps towards moving on.


The warmth of the springtime melted the snow, and
nibbled at the edges of Gerry's mood of depression.
His winter hibernation had been stifling, and he felt
restless. He emerged into the sunshine with the beginnings
of hope and a growing acceptance of his
new condition.


Using a white cane was a huge step in this acceptance,
but also a step towards a new freedom in
mobility. At first, Gerry was extremely reluctant to


153



take advantage of this mobility tool.


When I first got my cane, I hadn't had any training in
how to use it, so when I went out, it was 50% bravado
and 50% totally scared. But the thing that I was most
scared about initially, was people seeing that white
cane in my hand. That was a label. It meant I was
blind. What would people think? How would they
react? That was a big thing for me.


Fortunately for Gerry, it was at this point that his older
brother-in-law took him aside for a little heart to heart
chat. Gerry didn't repeat the exact words of the conversation,
but the message of the pep talk was clear.
He could sit in his room hiding behind his cane, or
else he could get up, get going, and get on with his
life again. The advice prodded Gerry into action.


By the end of the summer, Gerry felt ready to attend a
three week Independent Living Skills Program offered
by the CNIB. It was his second attempt. His first
attempt in the spring had lasted only until dinner time
on the first day. This time he felt ready to the point of
being both excited and even eager. The three week
program was the catalyst that Gerry needed.


Before the program was over, my heart was just
screaming at me that this was what I wanted to do for
the rest of my life. Inside of that three week program,
my life changed. I realized that I wanted to do this


154
with other people. I wanted to work with blind and
visually impaired people.


So, dear reader, are you thinking that this is a
touching happy ending to Gerry's story? Of course, it
is not! Gerry's decision was merely the first rung on
the ladder.


Gerry learned immediately that the requirements for
a social services worker at CNIB extended beyond
his likeable personality and new found desire to be
of service in the blind community. He needed either
related work experience or university education. He
had neither. However, through the Independent
Living Skills Program, Gerry had been fired with a
burning enthusiasm and a new motivation.


In the fall, Gerry registered as a full time student with
the University of Regina. It had been a busy summer.
Gerry had moved to a new apartment in a different
city, registered for classes, applied for student loans,
acquired a volunteer reader through CNIB, learned
keyboarding skills, and was in the process of
learning how to operate a talking computer. He was,
in fact, laying the foundations not only for a new
career, but for a new lifestyle.


One of the blessings in disguise around losing my
sight, was that it gave me a sense of direction in life,
certainly in terms of career goals and choices. By the


155
time I went to university, ten years after high school, I
had a completely different outlook. I felt that I had a
purpose, a sense of direction, and I think the most
important thing at that time, was that I was ready to
learn. I was open to that and excited about that, and
still am to this day.


From this flying start, Gerry didn't look back. In October
of the following year, he flew to Ottawa to collect
his new guide dog.


My guide dog, Ozzie, was an incredible thing for me.
I'm a dog lover anyway, but the sense of independence
that I felt with my dog, I compare it to going
from a roller skate to a Cadillac. I could get around
well with my white cane, but I felt I could fly when I
had my dog.


In the spring of 1991, Gerry began his golf career.
Although Gerry regards his success in life as a series
of small successes, certainly one of his major accomplishments
would be his prowess on the golf course.
From what started out as a few tentative putts on an
outing with a friend, Gerry has moved on to greater
achievements. He had played golf as a sighted person,
but confessed that, at that time, his aim was to
hit the ball as hard as he could and hope that it found
the hole somewhere along the way. As a blind golfer
with a new coach, Gerry learned there was more to
the game than that.


156
Dick (Gerry's coach) was fantastic. He taught me the
concepts of a good and proper golf swing. Once I
started to get the grasp of that, I was hitting the ball
further than I was when I could see.


Gerry continued to work on his swing. In addition to
improving his physical well-being, the outdoor activity
lifted his spirits as a whole. Gerry was launched
into a new environment of both blind and sighted
persons where the focus was not so much on vision,
but on a shared passion for golf.


Gerry joined the International Blind Golf tournament
circuit. In his first year, he placed fourth in the provincial
blind golf tournament, and second in the
Western Canadian championship. He was hooked.
He allowed his name to stand as director on various
boards and took an active role in the organization of
many blind golf tournaments. He has since served
two terms as president of the Western Canadian
Blind Golf Association. In 1997, he organized the first
Canadian Open, which turned out to be a huge
international event. He has been a prime player in
the move to amalgamate the Western and Eastern
Blind Golf Associations under one national umbrella.
He has worked tirelessly in the field of public
awareness. As a player, Gerry has represented
Canada in Japan, Scotland, England and the United
States. He is often in demand as a celebrity golfer at
charity tournaments, and sees this as yet another


157



opportunity to promote the sport and increase awareness
of the blind and visually impaired community.


Gerry takes this responsibility seriously in all areas of
his life. Being an ambassador for blind and visually
impaired people is one of the things that spurs him
on in his zest for life.


I think we are all ambassadors, whether we want to
recognize that title or not. It's an ongoing educating
process. We, the blind and visually impaired, are forever
educating sighted society, and that's something
that I love to do. I feel that if I can talk to one person in
a day and leave them with a thought or two about
blindness that they didn't have before, then that's
been a successful day.


So, where is Gerry today? He is still working for
CNIB, (seven years now), still taking university
courses, (he maintains an 80% average), and still
playing blind golf, willingly offering both his time and
talent to promote public awareness of the sport. He
has retired Ozzie, but in keeping with a promise he
made nine years earlier, has kept him at home to
enjoy that retirement. At this point, Gerry has chosen
not to apply for another working guide dog.


On a personal level, Gerry is involved in a loving
relationship, and with wedding bells on the horizon,
Gerry is a happy man. Shannon has brought a spe-


158
cial joy to his life. He continues to receive support
from other close friends and family members.


On a spiritual level, Gerry speaks very frankly of a
deepening faith and his relationship with God.


I think that my relationship with God has furthered
and fostered my zest for life. It's given me some ways
to look at things differently. I realize that no matter
how bad things get in a day, they are going to get
better. Every dark night is followed by a sunlit day.


Gerry's life of blindness has been a whirlwind of activity.
As we talked, he wondered aloud about the
passage of time. What had happened to the days
and months of the past twelve years? The long hours
of that first bleak winter, although remembered as
yesterday, seemed eons ago. He confessed that his
present goal was to slow down the pace, and spend
more time on the things that were personally
important to him.


Gerry has done a complete turn around. He has
come from a 'why me attitude' to a 'why not me philosophy'.
It is an attitude which he has cultivated over
the years of his blindness, and which he continues to
cultivate to this day.


A lot of life is attitude. I lost my sight when I was
twenty-five. I could have basically folded things up


159
and said that's it, and fallen into a life of whatever.
And I almost did. I could have, but thank God for that
three week program that August. It changed everything
for me, and for the better.


I choose to look at my vision loss as totally a blessing
in disguise. Whereas once I would think, 'why me', I
look at that now, and think, 'why not me'? I'm the perfect guy to be going out and talking to people
about blindness and visual impairment. I know what
it's like to have had sight, and I know what it's like to
lose it. I know what it's like to live the life of a person
who is blind. I am living the life of a person who is
blind.


I think of every day as a learning experience and I'm
thankful for that. I get up in the morning, and I'm not
looking at it as, oh God, another day as being blind. I
look at it as an opportunity and think, what is this day
going to bring. I go to bed at night and can thank God
for a wonderful day, no matter what has happened in
it.


Gerry gave me his full attention when I asked him for
his advice to the newly blind or visually impaired.
His words of wisdom seemed to me, to be a reflection
of his own attitude to life.


The most important advice that I can give is to take it
slow, and to listen to your heart. Take it one step at a


160
time, bit by bit, step by step, day by day.


Listen to your heart. Because you're not using your
eyes as much, or maybe not at all, let your heart give
you direction. I found with my own self, that as long
as I listened to what the voice in my heart was
saying, I was fine.


I think that it's also important to remember that you do
not become a different person when you lose your
vision or some of it. You're still you. I'm still me.
Some things will change, but I don't think we, as
people, change a whole lot. That's important to
remember. Sometimes we tend to overcompensate
when things are taken away from us, but if a person
can be who they are, and continue to be who they
are, it really doesn't matter how much sight they have
or they don't have.


What does the future hold for Gerry? No one can see
around that particular corner, but I am sure that Gerry
will greet his future with the same gutsy determination
and optimism with which he has faced his
past. I believe that Gerry has gained an inner
strength in his journey with blindness. It is a strength
which will serve him well in whatever lies ahead.
Gerry is eagerly anticipating the next chapter in his
life. What of the future? Only time will tell, but it is the
same for Gerry as it is for each of us. The journey
continues.


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CHAPTER 11 VISION


I may have lost my eyesight, but I haven't lost any
of my vision.

Wayne Phillips


It was one of our first conversations together. Gerry
turned to me and asked, "Sue, do you ever get tired
of being visually impaired?"


I was taken aback. Did I ever get tired of being visually
impaired? I had never seriously considered the
question before. Although at the time my answer to
Gerry was fairly noncommittal, from inside my head a
little voice was screaming, "Yes, yes! Yes, I do!"


Yes, there are days when I am tired of being visually
impaired. I am frustrated when I drop, spill or trip. I
am irritated when I cannot read the directions on a
pill bottle, find a telephone number, or read a menu.
I am sad when I cannot recognize the face of a friend
in the street, study my favourite paintings, or identify
the coloured wings of the birds outside my window. I
am tired when I need the extra time to plan and


162



organize my day so that I will be able to maintain my
maximum independence.


I am all of these things, but thank God, not all at the
same time and not all on the same day!


No matter what I have written about the stages of
grief and no matter how much I believe that grieving
over a loss is a process, the nostalgia for a past life
with sight sometimes overtakes me. Others with
whom I have spoken have also mentioned these
brief flashbacks of emotion.


* It can come back in an instant. As soon as I get
myself into a situation where my confidence is down
or I don't feel secure, I can get back into it. I have to
think, calm myself down, stop dwelling on everything,
and start concentrating on the skills I've learned.
That's what I have to go back to. Stressful situations
are the worst.


* I have good skills with my cane, but I can still panic
when I get turned around. I know it's not the end of
the world being lost, but it can still make my heart
pound.

* When I listened to this fellow talk, it was an instant
flashback to my own life. He was the same age I had
been when I lost my sight, and all the circumstances
were much the same. I was surprised when all the



163



old feelings came back again.


* I sobbed and I sobbed. I just couldn't stop. I'm not
sure why I started and in the back of my mind, I wondered if I would ever be able to stop. There was no
particular problem. Nothing was any different than it
had been the day before, but I just felt an overwhelming
sadness.

* We all have days when things don't go right. I have
to stop and think if this is just a crummy day, or is it
actually related to my blindness.


For most people, the feelings of frustration, irritability,
sadness and fatigue are fleeting. They are things of
the moment, here and gone again in an instant. For
most people, the positive feelings far outweigh these
negative thoughts. The same people whom I quoted
above, in the next breath, made the following statements.


* Sue, I want you to put this in your book. Life is good
for me. It may take me a bit longer to do things than it
does for sighted people, but life is good. I have a lot
of joy in my life.


* I think I've done more in these past two years with
my macular degeneration than I've maybe done in
the past fifty. I like what I'm doing.


164



* Not that I would refuse my sight if someone were to
offer it back to me, but I know I've gained a lot over
these past years. I wouldn't be where I am today if it
hadn't been for being blind.


* I am satisfied with my life. I had to change a few
things when I lost my sight - my whole family did but
things have worked out. I am very happy with the
way my life is today.


My own days are filled with satisfaction and contentment.
I am happy that I have good friends and a wonderful
family. I begin each day in eager anticipation
of what might lie ahead. I love mornings and often
get up early to take advantage of those quiet hours
before the start of a busy day. I enjoy physical
activity, particularly walking and swimming. I am
secure in my faith. I am excited about meeting new
people and learning new things. The latter is an
opportunity that has presented itself on a more consistent
basis because of the changes in my eyesight.


I am excited that I have been given the opportunity to
look at life in a different way. This is not the way I
would have chosen for myself, but I can certainly
choose the way in which I view and approach the
events of my life.


165



You, too, can choose the way in which you approach
the circumstances of your life. What is your perspective?
Is the glass half full or half empty? Do you
see blindness and visual impairment as a challenge
or as a disability? When you read the following letters,
what do you see?


opportunityisnowhere


What did you see? Some people say they see the
words, "opportunity is nowhere". Some people say
they see the words, "opportunity is now here". Both
answers are correct. It is only your perspective which
is different.


The glass is half full, and it is also half empty. Opportunity
is both nowhere, and now here. Loss of eyesight
is both a challenge and a disability. It will become
what you decide it will be. Both answers are
correct, but your own answer will both colour and
reflect your outlook on life.


I have heard the following story told many times, and
I hope you will bear with me as I retell it here. This
little anecdote illustrates one man's perspective of
life.


Two men, both seriously ill, shared the same hospital
room. For one hour each day, the man in the bed by
the window, was permitted to sit up. The man in the



166


other bed was compelled to spend his days and
nights lying flat on his back.


With only the hospital routine to break the monotony
of their days, the two men spent much time in conversation.
They discussed every aspect of their lives
to the present moment. The highlight of the day, however,
was when the man by the window was allowed
to sit up for the one hour each afternoon. At that time,
he described in great detail the scene outside the
window of the hospital. His companion listened with
eager interest.


Outside there was a park. On sunny days, the children
played in the park. They sailed their toy boats in
the pond and watched the ducks and the geese.
Several people sat on the park benches, and fed
bread crumbs to the pigeons. Young lovers strolled
arm in arm along the paths. To the east, the city skyline
was etched clearly against the distant horizon.


As the man by the window described the activities in
the park, his companion closed his eyes, picturing
the entire scene in his mind. One day, the man by the
window described a parade that passed through the
park, and his companion thought he could almost
hear the music of the trombones.


The weeks passed, and the two men continued with
their daily ritual. However, one morning, when the


167



nurse entered the room, she was saddened to find
that the gentleman by the window had passed away
during the night. After the formalities, his companion
asked if perhaps he could switch beds before a new
room mate was assigned. He would like to have the
bed by the window.


The nurse was happy to oblige, and the orderlies
were called to make the transfer. The man could
hardly wait until everyone had left the room and he
could have his first glimpse of the park and all the
activity outside his window. Carefully, he turned his
head, and with enormous effort, propped himself
onto his elbow.


You can imagine his surprise when he saw in front of
him a brick wall. Disappointed and a little angry, he
lay back down. When the nurse re-entered the room,
he told her of the stories his companion had told, and
wondered aloud about the park his companion had
described.


The nurse smiled quietly. "There is no park near
here," she said. "Your friend could not have seen
even the wall outside his window. You see, your
friend was blind. Perhaps there is another reason he
told you the stories he did."



168


Is the cup half full or half empty? What is your outlook
on life? What is your vision? These are questions
that could be asked of both blind and sighted
alike, but let us draw the focus back to the issue of
blindness.


What is it like to be blind? What does it feel like to be
visually impaired? It is a question that has been
asked of me on more than one occasion, and so, in
the course of writing this book, it was a question I
decided to ask of others. When I asked, I was not
only interested in hearing about the actual physical
event of becoming blind, but also in what it was like
to be blind or visually impaired.


Most people seem to make their way through the
stages of grief that follow the specific onset of blindness
or visual impairment. For some it is a very difficult
adjustment, but nevertheless, the majority seem
to come to an acceptance of the event itself. However,
most people who become blind, remain so for
the duration of their lives. What, then, is it like to be blind or visually impaired? What is it like to live as a
blind or visually impaired person? One man responded
this way:


When people ask me what it's like to be blind, I tell
them, "Close your eyes. What do you see?"


169



When they tell me that they see nothing, I tell them,
"Well, that's what I see. That's what it's like to be
blind."


It was the best explanation I heard. There was, in
fact, no other difference between a blind and a
sighted person. This man was no different in any
way, other than that he could not see. His blindness didn't change any other facet of his life. The person
who closes his or her eyes is exactly the same person
with eyes closed as with eyes open. Wayne put it
this way:


The only difference I have found is the way in which I
interact with my environment. I am the same person I
was before. I have had to learn new things in terms of
mobility and accessing information, but I am the
same person now as I was when I could see. My
blindness is just one small part of me.


Children seem to see this the most clearly. When he
was small, my son never introduced me to his friends
with the words, "Meet my blind Daddy." It was simply,
"This is my Daddy." We don't really change. I am still
the same person as I was before I lost my sight.


Because of our complex human nature, we will each
choose to respond to the conditions of life in our own
way. We may never fully understand another's
emotional response to blindness and vision


170
impairment, or to any other human condition. The
best we can hope to do is to communicate with each
other, to talk, to listen, and to show compassion.
Compassion comes the closest to understanding.


Sometimes, inspiration and motivation can be gained
by hearing how others have responded when they
were confronted with vision loss. We may look at the
life of a neighbour or a friend, or we may look at the
accomplishments of someone more prominent in the
public eye.


On May 25, 2001, Erik Weihenmeyer became the
first legally blind climber to reach the summit of Mt.
Everest. Erik lost his sight due to a degenerative eye
disorder when he was thirteen years old. Three years
later he took up rock climbing, and now, not quite
twenty years later, he and his sighted team mates
have mastered Everest. Erik is quoted as saying:


Someone told me that blind people need to realize
their limitation, but I think it is more exciting to realize
my potential.


This is the concept of vision. Erik Weihenmeyer saw
what he wanted to do with his life, and set out to
accomplish his goal. It was his vision.


171
What is your vision? What is it that you want to
accomplish in your life? We are not all meant to
climb Everest. Your vision will be to find what it is that
you want out of life, and then to set your sights on
achieving that goal.


In spite of miraculous progress in the field of optical
research, many of us who are blind or visually impaired,
can expect to remain so for a lifetime. If we are able to approach this challenge with confidence
and optimism, we will be embracing this new vision. This vision will transcend the endurance. It will incorporate
hope and a faith in the future. It will reach beyond
self. The blindness will still be there, but it will
be but one small facet of the whole.


When we have sight, we have vision. When we
become ex-sighted, there is the possibility of a new
vision. As ex-sighted people, if we allow this prospect
of a new vision in our lives, we also open ourselves
to the potential of becoming excited about this same
new vision.


So, dear reader, I wish you well on your journey. Be
brave. Step forward. Seize life.


172