For a very long time now both my mother and my sister
have been encouraging me to start writing a blog. ‘Tell people your story,’
they said. I never felt I’d anything interesting to write. Well my mother
pointed out something interesting today. She said ‘it’s been twenty years since
your eyesight went’. I never really thought of myself as getting old, but
twenty years is a long time. How much has changed.
Back in 1996, I was 18 and in my second year as an
apprentice with the Irish Air Corps. I had joined up when I was 16 and with
typical teenage brashness I thought I was the shit. And sure why not. All I’d
ever wanted to do was serve. After a youth watching Rambo, Top Gun and Hot
Shots on an endless loop, I had my whole career planned out. Alas it was not to
be. Over a period of a few weeks around March/April 1996 I started messing up a lot;
maps upside down, knocking over pints, not being able to read my writing, not
saluting officers, that sort of thing. I was also extremely fatigued.
I still remember the first trip to the medical aid
post. ‘Put your hand over your right eye and read the chart,’ said Commandant
Collins. Not a problem: Z W T 1 3 7 q e y. Easy. ‘Now cover up your left eye
and read the chart’. ‘OK’, I said, ‘Can you put the chart back up please’. After
that the fun and games started. After several trips to the medical aid post I
found myself on rotation in and out of the Eye and Ear. I had every type of
blood and eye test done. Along with an MRI I was being tested initially for a brain tumor and diabetes and then a whole rake of other conditions I'd never heard of at the time. They hadn’t a clue what was wrong. All this time
the sight in my right eye was getting worse and the sight in my left eye
decided to start packing it in. It’s hard to describe. Blurry cloudy vision.
Loss of sharpness with your central vision effected the most. If you look at
someone straight on from about a meter away, you can make out their hands and
legs but they’ve no head. Beyond a meter
people become more like blurry colours moving around.
Although a total pain in the ass and not exactly what
I wanted to be doing with my life, these trips to the Eye and Ear were
entertaining nonetheless. As nobody knew what was wrong every doctor and med student wanted
to poke around my eyeballs. My friends from the Air Corps who would accompany
me on these trips would get rather jealous as a young pretty female med student
would bend over and look into my eyes with some strange instrument. Then again
they had a different view.
On another occasion though I was on my own. So what happens is you’re put in a big waiting room and given a raffle ticket. ‘Take a seat your number will be called’. From what I remember I was the youngest person there. Everyone else seemed to me at that time to be ancient. You have to really picture this scenario. It’s a room full of people with bad sight or bad hearing or because of their age, both. A voice bellows from the top of the room ‘No. 17’ (it could have been any number I can’t remember). ‘Hmm’ I think to myself, ‘it might have been handy if I’d asked what number my ticket was’. There’s a pause, a bit of shuffling and mumbling. Half the people can’t see their tickets and the other half are asking ‘did someone say something’. ‘No. 17’ the voice from the top of the room bellows again. I get a nudge on the arm from an old lady beside me: ‘Excuse me son what number ticket do I have’. Absolutely comical.
On one of these trips to the Eye and Ear to get poked
at again by so called experts who’d no idea what was wrong I was sitting in the
waiting room when I heard a nurse talking to an older man. I was positive I
recognised his voice. Getting up I went to the other end of the corridor.
‘Uncle Danny,’ I said, ‘Is that you’. (Uncle Danny was my mam’s uncle). ‘It is’,
he said, ‘who’s that’. ‘It’s Wes,’ I said, ‘there’s something wrong with my
sight. What are you here for?’ ‘My sights going too’, he said with a worried
sigh. Not being able to see each other clearly we both could tell we were
looking at each other and thinking ‘what the …’ The nurse was thinking the
same. She went off to get the doctor.
With the extended family brought in we discover we
have a condition called Leber hereditary optic neuropathy (LHON). At the time
there was no test in Ireland because it is a genetic condition. A cousin of my
grandmother had been clinically diagnosed with mutation 11778. After we told
the doctor about LHON I still remember the doctor taking down a book and
blowing off the dust. (Or at least that’s my version of the account). ‘Yes
that’s what you have. Some of the cells in the optic nerve are dead and the
signal isn’t going to the brain. It’s a very rare condition’. Personally I’d
have preferred to have won the lotto.
well done Wes!
ReplyDeleteWes continue on with the story ....
ReplyDeleteWes as a donner you know we love stories you have to go on.
ReplyDeleteThank you for sharing! I am also affected and can totally relate to your story of the mystery diagnosis! It took them 7 months to figure it out for me. I also write about my experience living with LHON on a blog. You should check it out if you haven't already... www.girlgoneblind.com .... I also have a "Girl Gone Blind" Facebook Page and I love Sharing and supporting other blind bloggers! Keep up the great work!
ReplyDeleteWell so begin all great warriors epic tales.
ReplyDeleteWow wes a great story I'd love to hear more about it man
ReplyDeleteAwesome! Write more! Love your stories x
ReplyDeleteI love your story and the way you approach the difficulty. I'm an ex Donner 74-76. Mick Treacy.
ReplyDeleteI love your story and the way you approach the difficulty. I'm an ex Donner 74-76. Mick Treacy.
ReplyDeleteWell done lad, I remember that skinny yoke in the picture !
ReplyDeleteExcellent writing, as always! I love your sense of humor, and I look forward to reading your next installments.
ReplyDeleteWell done my long distance cousin! I remember meeting you in the 90's i was very young. You told my sister (Clair) that she was beautiful over in Stanford le hope Essex. Great to read this
ReplyDeleteSuper piece of writing, and that photo brought back so many memories of the 'Hostel'. Looking forward to the follow-up piece(s).
ReplyDeleteI shared part of that journey with you, and never once have you faltered you amazed and counfouded so many . cycling to training and the train, was nothing short of madness but thats you
ReplyDeleteWes please continue the blog I'd be interested to hear more,
ReplyDeleteWes please continue the blog I'd be interested to hear more,
ReplyDeleteWell done Wes look forward to more of your story
ReplyDeleteWell done! My son Clinton Collister's story is similar and he became affected about ten years ago. He now has his Masters Degree, is a high school teacher and recently was married and honeymooned in the land of our ancestors in Dublin and on the Isle of Man! I wish you could have met! God Bless you Wes!
ReplyDeleteWell done! My son Clinton Collister's story is similar and he became affected about ten years ago. He now has his Masters Degree, is a high school teacher and recently was married and honeymooned in the land of our ancestors in Dublin and on the Isle of Man! I wish you could have met! God Bless you Wes!
ReplyDeleteHey Wes, All these years on the internet I have never read a blog - I just never got the urge. Tonight I got a link to yours and it is fucking ace. I love your writing. Thanks for being my favourite blogger. Keep it up. ; )
ReplyDeleteWes, what a wonderful style of writing you have. A terrific narrative too, and again, I repeat, a very stylish manner of telling the story. Keep writing - as a reader I enjoyed your story and your story-telling. Well done.
ReplyDelete