Anne's Story
(adult, bilateral cataract)
My name is Anne I have just turned 30 years old and this
is my story.
I was born, well I think I was anyway, with bilateral
cataracts which were inherited from my mum who also had them
as a baby. They were diagnosed when I was about 4 months old
and removed when I was 7 months old.
I wore a mixture of glasses and contact lenses up until I
was 10 when I had lens implants. My sight is around the 6/60
level.
My school experience was quite frankly horrible. I do not
want to dishearten any new parents out there and you have to
bear in mind that this was 15 years ago. My primary school
time was fine. I went to a small school and of course primary
school books are in big print anyway so I basically managed.
When I went to middle school there was just no support at all.
That whole year I basically learned nothing as the text books
were just too small for me to read. I also had my lens implant
surgery that year and due to an infection ended missing nearly
3 months of school.
It was our hospital optician who put my parents in touch
with the team from the local authority that supported visually
impaired children. There was a school in our town that had a
unit to support vi children and I was due to start there the
September after my surgery. Unfortunately my parents moved
house that summer and I ended up at the opposite end of the
country.
There was a middle school just around the corner from where
I lived but the headteacher said that he did not want any vi
children in his school. The education authority said they
could force him but my parents decided to send me to another
school. This meant a taxi ride to and from school every
day.
At first things were fine but soon enough they went down
hill. I remember quite clearly thinking as a 10 year old after
just over a term in the new school that I was like a Christmas
present. The novelty of my sight had warn off and I had been
thrown away.
I used to spend my lunchtimes in the school field talking
to the headteacher who I have to say was a very supportive
man.
Things went from bad to worse when I went to high school.
I was subjected to a lot of emotional bullying from the other
girls. They used to tell everyone that I was a lesbian and
that was why I did not have a boyfriend. Things got so bad
that I actually invented a boyfriend who was to live near
where I did as of course I still went to school by taxi.
Although I do not remember this incident clearly myself my
mum said that one day I asked her whether she thought I was
a lesbian because of what the other girls said at school.
I never dreamed of getting married or having children of my
own. I can quite honestly say that at high school I only had
one person who was my friend or even talked to me. I still
keep in contact with her and I am sure that I would not be
here to tell my story if it had not been for her
friendship.
At 16 I went to a school that was just for vi children.
I was really looking forward to going there as I thought at
last I would be accepted and have all the friends I wanted
and have a good experience at last.
Well I was wrong again. Just because someone is also
visually impaired does not mean you are going to get on with
everyone does it. I plunged headlong into a relationship with
the first boy who showed any interest in me. I was heartbroken
when he two timed me with another girl. This was a difficult
time for me. I feel that at this point I had a bit of a mental
breakdown. My expectations about what life would be like at
the vi school were so far removed from reality I rebelled
against everything at the school and to be honest was nearly
suspended. In the end I had counselling outside of the school
which helped me put my feelings in order.
After leaving the vi school I went to university. I had a
pretty good time at university. It was difficult at times
coping visually with the work as I studied law and there was
a lot of reading involved but I got through with a 2:2.
After leaving university I was still living at home.
I began work at a local solicitors firm as a legal secretary.
My parents had moved house again while I was at university so
apart from the girls I worked with I did not know anyone where
I lived. As all the girls were in couples I decided to join a
dating agency with the intention of just meeting people and
going out. Well believe it or not I met my now husband. He is
fully sighted and we have been together for almost 9 years
now.
We got married nearly 6 years ago and now have two boys.
So there you go the girl who though she would never get
married and have children is now a wife and mother to two
boys. I have done some incredible things in my life I have
been skiing and white water rafting. I did a tandem sky dive
as an 18th birthday present from my parents. I have been to
university and have always worked since. At last I felt
content with my life and able to lay the demons of my
childhood to rest.
This is however not the end of my story. My youngest son
who was born last September was diagnosed with bilateral
cataracts at his 8 week check up with my GP. To say I was
devastated is an understatement. I remember having a
conversation with my midwife when I was pregnant with my first
son saying that ah well I was not that bothered if my kids had
cataracts as I had turned out ok. Well I now know what a
foolish thought that was.
I think I have had the full range of emotions concerning my
son's cataracts. He has had 4 operations in the last 6 months.
When you hold your baby in your arms as they give him the gas
to make him go to sleep you feel such a mixture of concern and
apprehension. I also feel the guilt of knowing for sure that
his cataracts have been inherited from me. I went through the
feelings that I had experienced as a teenager again and the
worry about what would happen to my own son.
Through the support of my family and the other parents in
the CCN I now feel I am ready to take on my son's eye
condition and of course having experienced life with
childhood cataracts myself I hope that I can help him develop
to his full potential. My health visitor says I am a very pro
active mum as everything she suggests I do I have already done
and worked out for myself. I know there are going to be bad
days as well as good in our future but when I look into the
smiling face of my baby I know that he is happy and that we
will get through whatever the future will bring.
Last updated: 05/08/08
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Childhood Cataract Network
