Carol Brill's story

My name is Carol Brill and I come from Dublin.

Having Usher Syndrome brings many losses, not only visual and hearing loss, but also loss of independence such as driving, playing tennis and basketball, being able to go shopping alone, being able to see in the dark – all these things I once had.

I was a fully sighted person, now I’m partially sighted.

I first discovered my diagnosis at the age of 21. My parents had known about my condition since I was 11 years old. My 15 year journey (do the maths!!) since discovering that I was facing blindness has been rather interesting. Lots of highs and lows. At first, I turned to alcohol for a short while to deal with the shock of finding out I was going to be blind. Then one morning I woke up and decided that drinking was not going to solve my problems. I remember that day clearly in June 1992 when Ireland lost its chance to play football in the European Championships. So from that day on, my life changed. My horizon consisted of charity involvements, a civil service career, furthering my education, and personal challenges. Having Usher syndrome has provided me with the excuse to grab life with both hands. From parachute jumping, cycling in Australia, trekking in Nepal, to the less physical exertions of being national chairperson of Fighting Blindness Ireland, being appointed by government as a board member of a state agency, and to now, running my own coaching psychology practice, and representing people with Usher Syndrome on the Deafblind International Council.