Ocularist John Pacey-Lowrie, who you may remember from our last blog on prosthetic eyes, discusses his own journey with a different eye condition, and his training of a man who had retinoblastoma.
Being born with RIGHT sided microphthalmia and coloboma has had its challenges throughout my life and as I alluded to in my first blog it was no fun growing up with this condition. Although I am convinced it made me a stronger character and in a funny way increased my confidence rather than depleted it, that said and even behind tinted spectacles I still at nearly 70 years old age am aware that I avoid eye contact quite a bit and especially when meeting people for the first time, a direct contradiction to the previous words but in that situation my confidence wains a little. The earliest evidence of how much this bothered me was my total refusal to have the “Annual” school photograph taken, needless to say I had no choice so it was done under protest, I still hate those pictures now, even as a baby propped up in a pram sitting outside the front of the house unaccompanied, how times have changed! I used to pull my woolly hat over my blind eye, probably because the marginal perception of light bothered me or was I already unhappy about my eye condition? Who knows. My mother, a fair-but-tough cookie, was constantly asked by passersby “what’s wrong with his wee eye hen “ Scottish vernacular included! I learnt much later in life how the replies went but these are totally unprintable!
I would like to tell a bit about my life with right sided microphthalmia which I sincerely hope will not panic parents or adults alike and I am sure that my case is a bit unique!
Whilst I learnt to cope with monocular vision and made the best of my lot things like learning to drive and contact sports were not easy but I did it nonetheless, I was always fairly healthy as a child and of course got all the usual, at the time, infections such as chickenpox, measles and anything else free in Scotland. It was not until aged fifty-two that I became seriously unwell with heart problems and being diagnosed with blocked coronary arteries, another obligatory Scottish disease! I underwent an open-heart procedure to have bypass surgery and learnt post-operatively that my RIGHT coronary artery was 75% shorter than it should have been, a coincidence or not, being on the same side as my microphthalmia.
Life moved on and I made a good recovery from the surgery only for it to fail twelve months later requiring further intervention which so far still works!
Then in 2016 I visited Indonesia to help a young man develop his skills as an Ocularist, himself having a two-year-old with bilateral retinoblastoma and subsequent bilateral eye loss. During that visit I contracted a rare water born disease which to this day, although fully recovered, has yet to be formally identified but as a result of this illness I was admitted to hospital on my return to the UK whereupon an abdominal CT scan, as a diagnostic aid revealed that my RIGHT kidney was missing and had in fact had never formed! Can you imagine the shock to a Scotsman? One kidney and no knowledge of this and never refused a drink in his life!
So the moral of the story rather than a warning to those with monocular vision is not to be scared and chase after scans of vital organs but to make the best of what you have and still be who you are, in my case I keep going as a “deficient right sided syndrome”…who knows perhaps you know someone in the same club!