A brief synopsis on my disability, though I hate that word
it’s better than handicap… I was a year old when my Mum and Grandmother noticed
that I was dropping toys and not being able to find them.
Four years later, after countless visits to the Doctors and
hospital, many trips to child Psychologists proving that what the Doctors said I
had learning difficulties, there was nothing wrong with my vision, was in fact
a load of rubbish. Psychologists said time and time again in their reports I was
very much so above the average for my age. So, eventually the so-called
specialists at the hospital had to agree to look at my eyes. Yes, you read
correctly, they hadn’t even Shon a torch in my eyes before the age of four and
a half.
My poor parents had to battle all the way including refusing
to send me to a school for children who were as they called them in those days.
Backward. Thank Goodness she won her battle as back in those days, there wasn’t
as much corruption and what the Psychologists said was what they found.
My Mum was told I had Retinitis Pigmentosa. I was going
blind. To take me home give me the best Christmas as next year I may not be
able to see. Also, I would definitely be totally blind by the age of 13. And,
remember I was four, and was there through every stage of the way, I was not
ever allowed to have children as RP was hereditary.
Again, in short, my Mum took me to various countries even to
see the nuns in Lourdes. Eventually ending up in going to the former USSR. I
went there from the age of six until I was 22. I won’t go into detail of the horrific
things that happened to me there or the wonderful times I had. Just my sight
did improve. But, I had to go every six months of my life. and the treatment
was very very painful.
My childhood was spent at dreadful boarding schools where I hated
so much. I saw things that no child should see. The teachers in general were
great, there were a few who shouldn’t be allowed near children, but most of
them were fantastic. But the house staff? Heads and Matron? Another long story
for another time, hopefully my autobiography.
I married at 17 had my first and only baby at 29 and at the
age of thirty, I woke up totally blind. I hadn’t been to Russia for some years
but the night before I lost my sight, I was reading tiny print.
My life was more so hellish than ever before. In a marriage
that was far from happy, I battled through my blindness and it was a battle. I had
no family as my Dad died two weeks after I went blind and my Mum five and a
half months later. Bringing my baby up on my own as my ex was not a Dad or
Husband. I suffered in silence. It was ten years later, when I was reunited
with my first boyfriend from school. Someone I had never forgotten. I was then
properly introduced to the world of how blind people do live. As he was born
blind. And at last I had a life. though the challenges are really tough. And I dream
to see again one day.
This is so short as I could really write a book on my life
story, how it was to be able to see and then lose it. The pains I went through
but the laughs I learned about later. My day to day living is some days an existence.
Other days a trial. And on some days a pure joy.
Some say blindness isn’t life or death, really? I know a lot
of people who would disagree. Sight loss effects many members of our families.
My Son has benefited from having a Mum who can’t see as I made sure his life was
the best I could offer him and he grew up with compassion. I took time to
bother with him. They say you become more caring when you lose something, well,
I have had much experience with that aspect.
My Husband is the Dad my Son needed in his earlier years. And together
my Husband and I have brought up a good young man with intelligence and
kindness.
I know of people who were happily married until the threat
of blindness is spoken about then everything starts to crumble. Parents who’s
lives are crushed when they hear about their children’s diagnosis and siblings
who suffer either with guilt because they were born RP free, or, go through
their own troubles as they feel left out as suddenly attention is given to the
child with the sight problem. I know of two men, one worked his wife brought up
the children at home. They had a lovely big house and a good life. he was
diagnosed with RP. Within three months lost his job, his house and his wife. He
no longer could drive, in fact he shouldn’t have driven for some time before he
was given his news. Another, a Policeman who was shot in his face causing him
to lose his vision. Not caused by RP obviously, again lost everything, he
couldn’t cope didn’t give him chance to get by the grieving process and hanged
himself. So, when people say blindness isn’t life or death, I have to disagree.
I could write about my years spent in Moscow and in fact in
my blog I have written many stories about the KGB, Russian Mafia and more. The
Black sea and life before and after Perestroika.
For me, blindness has caused huge depression, a childhood I should
have never had. Being sent to boarding school at the age of six is no life for
a child but it was there where I have made lifelong friends. My Husband and I have
taken my Son to many countries on holiday. With his help of sight, he has been
to America, Germany, France, Italy, the Caribbean and Norway. He even did his
job experience in Japan thanks to my Husbands last job which took him all over
the world.
My Husband and I took tests at our first school. Both of us
passed to go to very good schools. Sadly, in my case, as soon as the head
learned I had to travel to Russia twice a year taking me out of school for ten
weeks at a time, he told me he only excepted children who would get A’s and I couldn’t
with so much time away from education. So, it was a normal school for me. Education
wasn’t to be. As soon as I was 16, I left school. As for my Husband, he bloomed
and went on to university, but again, he had a battle. He was actually told by
Cambridge University where he passed to enter there, they couldn’t take him
because he was blind. Now days, that wouldn’t be allowed. Thankfully. So, it
was Leeds University for him where he took three degrees and then a Masters in
business. He has worked internationally and achieved so much. I’m so very proud
of him.
Looking back, I do wish I hadn’t gone to Moscow, though it ruined
my parent’s life as they had no life, as Moscow was a fortune for them. So,
holidays etc was out of the question. They had a very simple life but full of
worrying about me and that I feel so forever bad for.
If not for Moscow, I would be someone now. I would have had
a life. And I wouldn’t have waisted 23 years in a cold hard marriage. I guess I wouldn’t be writing this too, as my
whole life has been spent in the media so what would I write about in the
future? Certainly not what I intend writing about. As I wouldn’t have had the
life I have had.
I believe our lives are mapped out for us. I just hope soon,
mine takes a different road and it’s heading towards a cure or, at least treatment
for blindness. As I have so much to do in my life that sighted people will just
take for granted.
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