Good morning Bloggets. I guess it could be afternoon or
evening wherever you are? I should just say hello, right?
I receive so many emails from people who have just been
diagnosed with my eye disease and those people are in such a state. When it
comes down to it, most if not all, still drive but the thought of going blind has
terrified them, and this is understandable.
I never had enough sight to drive but I had enough sight to
read tiny print or see my Sons face as a baby so clearly, yes, a small section
of his face, but what I could see was as clear as a sighted person would see. I
used to see both of his eyes then move onto his little nose then his mouth and
cheeks then hair. Then store all of that in my mind and put it together like a
jigsaw puzzle.
I could see colours so well and anything that was still
enough for me to build up my jigsaw to put together in my overflowing mind.
I had that sight which to me was everything. When I lost it I
wanted to die? No way I could live in this world. But, I had to for my
Son. The pain that I went through during
the moment I learned that I had gone blind and the time it took to learn how to
be, live as a blind person was for me hell on earth. But the lead up to that
life changing day was almost as bad. Each night I would go to bed with the
words from the Doctor as a four year old child, I had to listen to this. “Fiona
could go to bed tonight and wake up tomorrow morning blind.”” The ironic thing
is, over the years I learned that this is rare and most specialists had never
heard of a person with RP going blind overnight. But, that’s exactly what
happened to me. 26 years after that awful man said those words to my Mum. And it
was 26 years earlier when the lives of my parents changed forever. There began
their mission to save what sight I had.
At best, I had 35% in my right eye and 27% in my left eye. I
could see 8 lines on the eye chart with my better eye and 7 with the other.
After many doors being closed on my face Doctor Professor
after specialist all saying there is no treatment for anyone with Retinitis
Pigmentosa, we eventually found Moscow and that would be my second home for 16
years.
What I experienced there was nothing short of cruelty and
some form of abuse, but the Doctors were nice to me treat my Mum with respect
and the treatment did seem to work as long as I kept going for the dreadful
painful treatment that was offered. I have written in other blogs about some of
the things that went on during my trips to Russia. One day I hope to write my autobiography
and tell all what went on. I have also written about how I wish I had never
gone to Russia and wished that my parents God rest their souls would have excepted
the fact that I was going to go blind, and their life would have been much
better as would mine. But good parents want to do their best for their child
and they thought they were doing that for me. I think I would have done the
same if I was them in those days. They didn’t know anyone who was blind or had
any sight issues. They were amazing parents and to be honest had a dreadful
life because of their commitment to saving my eyesight. I wish I could turn
back the time and tell them as a four year old child, that I wanted to let
things happen as they were meant to, having said that, I wouldn’t have been
able to see my child’s face from birth until he was a year but to see that then
have it removed I do wonder if that was crueller than never seeing him?
The day I went blind, I didn’t know anyone who was in the
same boat as me. Everyone around me was sighted. There was no internet in my
life and no talking phones and as for time? I didn’t even know that you could
get a talking clock. That day, was the longest day of my life.
I was alone and after I thought it was the end of the world
because no lights were working and my room was in total darkness, the silence
that surrounded me for at least whatever time, was haunting. It was broken by
the sounds of my baby shouting for me from his cot.
My God. How was I to do his bottles or nappies? Even take
care of him. Play with him make sure I could carry him down the stairs, even
find his bedroom. Oh, my goodness I still shiver as I write this.
Where was the bathroom, how would I find my clothes? My
babies clothe? Did I look any different? What would my baby think? He had just
started to point to things and try to say the word what he thought it was. One
of his words was light. I went into his room, he was in his cot. This was the first
time I had gone to him without vision. Where was he? I knew in his cot but
which end? Of course, now I would say well, listen for his voice? But back then
mixed with shock, I didn’t even know the basics of blindness.
It was then he did his normal thing of pointing and as he
was so close to me, his silently grieving Mum, I couldn’t tell him what he was
pointing to, to tell him the word. How was I going to teach my very intelligent
inquisitive infant?
I felt my way around his room with one hand he was being
carried in the other arm. Passing his bookshelf with all of his beautiful books
in, oh the pain was dreadful. Who now would read to him?
Again, I have spoken before about what happened over the
next few hours, days, weeks, months leading to years, and again I hope one day
to log all my words into a book, but fast forward nineteen years, I’m here, I’m
me and I survived.
So basically, I understand pain and fear. At least most of
the people who contact me now have the support of online groups and organisations.
The internet is here now and people can do their own research. Hopefully unlike
me, they will know always what time it is in the day. That few weeks of first sightless,
I had no form of time. No idea of time either. My days went into nights. I was
on my own and was so determined not to let my condition effect my child, I
became a better actress than I had to be during the years of boarding school!
© Fiona Cummings
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