Robert (Rob) Driscoll
I was a 13 year old fat kid in state secondary school who failed at most academic and sporting pursuits, but was so laid back and used to failure that it didn’t bother him. Over March 1990 I lost 80% of my sight to LHON.
I was 13 and lost my sight in March 1990 – I remember complaining that I could no longer see the blackboard in my French lesson. This was dismissed as me whinging, but checked just in case. The optician diagnosed a slight stigmatism, but by the time the prescription glasses arrived 5 weeks later they were useless. I was initially diagnosed with psychological issues manifesting themselves as sight loss.
This was incorrect, but it took them another 6 to 9 months to diagnose and confirm the LHON diagnosis. Most of the medical fraternity spoke to my parents due to my age – it took weeks before anyone explained to me that it was permanent sight loss.
During that period I became incredibly introverted cutting off physical and emotional contact with friends or family and beginning to hate myself. I initially tried to accept that I was mentally unbalanced until they told me I was not.
I stopped eating to redress my weight issues and used to throw up – I lost 3 stone by eating little or nothing. I planned my suicide which was going to utilise a combination of pills and hanging myself. I was alone.
I began to focus on my school work purely to avoid contact and stop them taking me out of main stream school to put me in a special blind school.
In 1991 I came top of the year for Math, and English – I realised I had just been lazy and could achieve. There was no going back.
However, whilst I remained focused on study I was angry for many years and used to take to drink to forget the anger.
I felt I had to prove there was nothing I couldn’t do – this became a blessing and a curse. I wanted to push the boundaries of everyone’s expectations academically and physically by competing with the top students and insisting on going skiing and continuing to ride my bike. I have never lost this personality trait.
I used readers at school. A combination of friends and parents read to me through University and College. Access to Work helped me get started on a practical day to day level in work with gadgets which could help access written material. It was never easy as sometimes I even studied for 22 hours a day to process information others could access easily.
Beyond incredibly supportive parents, I didn’t access any support networks as I was the only one who was going to help me. I leant to fight through hard work (not always easy) for what I wanted.
LHON has made me strong and helped me achieve things in my life professionally and personally that the boy I left behind was in no way capable of achieving. It is a fundamental part of me for which I am grateful, but it does not define me or what I can do.
My life now is complete. I have two gorgeous children and a best friend for a wife. I’ve had a great number of adventures around the world including driving sports cars in Italy, flying gliders in Scotland, riding elephants in Zimbabwe and have been lost in Berlin, Hong Kong and the Kenyan jungle. I love what I do with a relatively successful, rewarding and challenging career leading a team of construction lawyers, representing industry to the 4 UK governments and being a mediator.
After 24 years of isolation, although in my journey of acceptance I have found kindness in the most unusual places (including gangsters and drug dealers), I have found people in the LHON Society who understand that other part of my life which the sighted family and friends will never. There is no doubt that being blind brings a whole load of day-to-day challenges, e.g. getting the toothpaste on the toothbrush, but these are no more difficult than anyone else has to face in their daily lives, just different. I do not want a cure and am not a problem which needs to be fixed.
My advice to someone with LHON is, you are capable of more than you ever imagined – the only thing that will hold you back is you.
It is easy to blame everything in life on LHON, but it is harder to blame yourself, forgive LHON and do something about it.
My blind mentor (who has since passed on) also told me at 13 “In the kingdom of the blind, the one eyed man is king.” It took me years to work out what he meant.