Open Writing

Macular degeneration is a condition of the eye that involves deterioration of the pigment in the retinal tissue at the back of the eyeball. Most people who contract it do so in their latter years. Sometimes, however, it affects the young. Early onset macular degeneration is a form of blindness that permits you to see shapes, colours, movement and perspective but prohibits you from reading normal-sized print, driving a car or - and this can be the hardest of all - gazing into the eyes of your loved ones.

I developed early onset macular degeneration as a ten-year-old girl, although it was only confirmed in my later teens. At first, it was thought that I was merely short-sighted and I was attended to by an ordinary optometrist. However, within a year, I was unable to read what was written on the blackboard even when sitting in the front row of the classroom.

My parents took me to see an ophthalmologist who sent me for a battery of tests and scans, and it was eventually concluded that what I had was a form of Retinitis Pigmentosa. We learnt that there are many ways in which the retina can deteriorate: sometimes from the outside in, which is called "tunnel vision"; sometimes from the inside out, which is called "peripheral vision"; and sometimes in more irregular patterns, which go by a number of technical names. My condition fell into the latter group and I was told, "We can't do anything for you except give you glasses that will focus the areas of sight which you have. The most important thing now is to learn how to adapt your lifestyle."

By that time, I was about seventeen. I was fortunate that my school was willing to make concessions for me. They allowed my friends to dictate notes off the blackboard, excused me from reading aloud in class and exempted me from ball games. On the outside, things appeared to be going quite well, but on the inside I feared what would become of me when I had to leave home and enter the wider world. Most frightening to me was the thought that I might never get married and would spend the rest of my life being dependent on other people to go shopping.

I went through a period of fluctuating anxiety and depression, crying out to God for strength to overcome my limitations. At this time, my faith was of enormous help to me because it kept me in contact with Christians who were compassionate and, at the same time, fun. They encouraged me to participate in social activities and join a music group where I could sing and play the guitar. This built my confidence and gave me a sense of self-worth.

My mother arranged for me to join a library for the blind which supplied my final-year English set books on tape. I qualified for large-print examination papers and was permitted extra time to complete them. All this enabled me to achieve an excellent school-leaving certificate and entrance into the university of my choice.

I registered for a Bachelor of Arts degree, continuing my studies in English Literature with the aid of the library for the blind. At this stage, I could still read my own hand-writing, so I developed a form of note-taking that relied heavily on listening to the lecturer and not at all on what was being projected on the screen in front of the class. Far from being an impediment to learning, this proved an effective way of concentrating. Four intensive years of it honed my listening skills into a valuable coping mechanism. I found I could maintain complete focus over an extended period and, at the same time, visualize what was being indicated. Naturally, my imagined representation of the charts and diagrams was often very different from the originals, but that only served to challenge my mental faculties to perform at a higher speed and level of agility than they already did.

At nineteen, I met the man who was to become my husband. From the start, he treated me with kindness and respect. I would do crazy things, like boil budgie seed instead of rice for supper, and he wouldn't make me feel foolish. Once, when I was baking a chocolate cake to take to his family, I taste-tested what I thought were chocolate sprinkles in a plastic tube, only to discover that they were potassium permanganate crystals. I had to face the family with a stained tongue, but fortunately they didn't comment! Another time, I removed what I thought was the cap of the salt cellar to be surprised when the entire contents landed all over my food. I'd taken off the lid by mistake, and now my meal was inedible!

Over the years, I have learnt to accept my shortcomings and deal with my quirky behavior. The key is not to pretend you are something you are not. If I turn up with odd shoes to visit someone,and they point it out, I don't try to defend myself. If I did, I would end up sounding pathetic and they would pity me. Instead, I acknowledge how ridiculous I look and tell myself that I am unique; no-one else in their circle is as unpredictable or entertaining as me! Likewise, it is no use trying to retain my pride when I tumble down a flight of steps. Far better to accept the help and comfort that comes my way, resolving aloud never again to attempt those particular steps without leaning on the arm of some obliging man!

Everyone, I have noticed, has their weaknesses. Paradoxically, those of us whose weaknesses are more obvious have an advantage. We are forced to adapt, accept our faults, face our fears and find ways of getting along with others - because if we don't, we will either be despised or cast out. For this reason, I am grateful for my impaired sight. It has taught me more about tolerance, compassion and humility than any sacred text or religious practice. Macular degeneration has taught me that it is possible for a physically damaged world to find spiritual wholeness and peace.

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This is the first of a series of articles by Leanne. More will follow on succeeding stories.