by Ann Marie Houston
My earliest memory of having trouble with my eyes was in my early teenage years. I particularly remember daily tripping over a low bench- seat which my brother had made in his school metalwork class. Unknown to my family and myself this was one of the first symptoms of the condition I was later to discover I was suffering from.
Tunnel vision means that the sight we need for safe mobility and seeing objects below waist height is missing and it is only possible to see directly in front at eye level.
I always seemed to move more slowly than my class mates in school, holding on to the banister while the others rushed up and downstairs between classes. However, as my eyes looked perfectly normal and I had no apparent difficulty with my studies, there was no reason to suspect sight loss.
In my home life, I seemed a clumsy child, knocking over glasses on the dinner table, bumping into tables and chairs and generally accident prone.
Routine eye tests failed to reveal any obvious sight problem as I was suffering from tunnel vision and the little central vision remaining, was of good quality. Therefore, although I could read the standard eye test, as I focused on the letter panel, the optician had no way of knowing that I was not seeing anything or anyone else in the room! This is the common experience of others who have been diagnosed with R.P. Everyone believes that what we ourselves see is the same as other people!
The second classic symptom of this condition is night blindness. At around the age of ten I remember playing `I spy` in the dark with my friends, I clearly recall being unable to identify objects in the room with the lights out. Again I subconsciously believed that I was less able than others, without knowing why. In my late teenage years when I began to socialise in discos and pubs, I knew that I had serious problems recognising people in dim light and I was unable to make my way around without following someone. My friends noticed my difficulties and often suggested that I went for an eye test.
As I was busy with A-levels and university plans, I kept putting off the appointment, but when I tried to learn to drive, it was obvious that my sight was giving me real trouble. I couldn`t judge the distance between the white line on the road and the verge, I drove dangerously close to other vehicles and I wasn`t able to see the two sides of a pedestrian crossing without moving my head from side to side.
Strangely I could read perfectly and I had always thought that `bad eyesight` meant hazy or foggy vision – little did I know that even at this stage I had almost keyhole vision!
After yet another disastrous night out in a disco with too many steps and too little light, I went to get the opinion of an optician. I honestly believed that there was something wrong with me and that she would find no problem, after all I had been told several times before that I didn`t need glasses. But, this little old lady soon due to retire had a verdict that would change my life forever. She took a look in my eye using a light and asked me if I had ever heard of R.P. Of course I hadn`t. She continued, `there appears to be some evidence of damage to pigment in your retina and you will need to attend a specialist in the Royal Victoria Hospital to have this confirmed.`
My diagnosis followed soon after and was a very distressing time. Although the specialist was a very pleasement man, he told me that my condition was progressive, that there was no cure or treatment, that I would have little to no vision left by the age of 40, that I would never drive, and that my career opportunities would be restricted.
I will never drive and I find this the most difficult sacrifice of all. However, I have learned to `see` the great social aspect of using public transport. I have met some of the most interesting people on busses and I enjoy my daily journeys to and from work in taxis. Taxi drivers are great entertainment, they know all that the gossip and up to the minute happenings in town. I think of all that I would be missing if I travelled daily by myself in a car.
My attitudes have changed about many things in life. I know that I have developed many coping mechanisms in life with R.P. perhaps the most important of these is my sense of humour. There is a funny side to many of the unfortunate things that happen to blind and visually impaired people. You can only laugh at some of the situations you find yourself in. For example recently I followed a man I believed to be my husbend into a seat in church. How embarassing, and how funny! I have often linked onto the arm of a stranger believing them to be the friend or family member I came with!
Having met many others with my condition, (the incidence is approx. 1 in 3,000) I decided to become active in support groups for people like me. Sadly, often people who are told the negative things about R.P. when they are diagnosed, become depressed and give up hope in life. I decided early on that I would work hard to improve the `lot` of people unfortunate enough to develop this condition. It is through this work that I have had some of the most gratifying experiences.
I now represent visually impaired young people on several committees, both in Belfast and in Dublin. With others, I spend time raising the profile of the condition and improving the lifestyles and confidence of others with R.P.
I work full-time and with the support of my colleagues I cope reasonable well, my work as a library assistant is a great source of enjoyment. I have two beautiful children who are very understanding. I need them to support me with little things like telling me about where they`ve left their schoolbags lying in case I trip.
Friends and family help when I need them to and I am no longer too proud to ask for their help. Ten years down the line from diagnosis, I have recently been registered blind and I now use my white cane when I travel alone to Belfast or Dublin. I would say that having a visual impairment is definitely a disadvantage but having a negative attitude is more of a disability. People in my position need to develop and new perspective on life – literally!
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