We all have certain weaknesses, certain flaws maybe in appearance, personality or possibly physical or mental conditions which leave us feeling unsure of ourselves. It amazes me how some people can cope with what seem to be insurmountable challenges in their lives and bounce back time after time while others hit a small bump on the road and crumble. My mother inherited a genetic eye conditon from her father and she in turn passed it on to two of my sisters and me. We then passed it on to some of our own children and on it will go until a cure is found and the disease is no longer an issue. The disease has caused major problems in all our lives, or we have let it cause problems. It is only a small disease on the scale of major diseases if the truth be told.
I dont know much about the background or how and where it started in our family because our family tree in fact is only a small withered twig. My mother grew up in a boarding convent along with her younger sister. Her mother died when they were young and my grandfather couldnt look after them. She never saw my grandfather again until the day he was buried so it goes without saying that we never met him. My mom always had very poor vision for as long as I can remember. I dont think she could ever read and never went out alone. She depended on my dad and his sisters for shopping and taking us kids to school each day. She therefore never learned any coping skills. Today she is almost blind and totally dependent on her family for everything. Next generation, the disease had gotten weaker. My sisters and I can all lead fairly normal lives. None of us drive, none of us ever tried to learn. Other people with this condition drive. The main problem caused by the disease which by the way does have a name "Retinitis Pigmentossa" or RP for short is night blindness. It gets worse as a person gets older.
I have always been fairly confident about myself but "the disease" has been my blind spot. When I was a kid i hated halloween, ya know, trick or treating because it was in October and nobody went out until it was dark, not my best time of day. I loved to sing and have been told on several occassions that I have a good voice yet whenever there was a part going in a school production no matter how much i longed to go for it I held myself back. When I grew older I had many chances to sing in public. I had an agent trying to promote me, got the pictures taken etc but my insecurities never really allowed me to spread my wings. What if I there were stairs to the stage and I missed a step and fell or tripped over something. What if. I never told anybody about my weakness, just covered it as best I could and got on with life. My disease kept me in my marrige years longer than I would have stayed if I had not had it. I never went out alone at night, once it was dark I was in prison and my husband knew it. The times he didnt bother to come home I had visions of me marching into the pub where I knew he would be and throwing yet another ruined dinner at him to the amusement of all his mates. I longed to walk into that pub dressed in cool sexy gear strut my stuff up to the bar and order a large vodka tonic while totally ignoring him. I had the looks and the confidence about me to do it but "the disease" held me back.
My marriage eventually came to an end as I always knew it would, another story, and I moved into a house with my then thirteen year old daughter. Like my mother before me I had not learnt any coping skills. My husband was never reliable but I always managed to persuade him to drive if I needed to be somewhere after dark and he was a jealous man so he would never let me go out alone anyway so it had never really been an issue. Suddenly I was on my own. I loved the Summer and the long bright days and evenings. I could go out after tea walk my dog, go to the shop, small things I know but I was in control. I didnt have to do the crazy three thirty dash home each day before darkness decended I had freedom. Nothing lasts and eventually September brought the darkness back and I was trapped. The first real problem came with a letter brought from school by my daughter. The annual parent teachers meeting was to be held in the evening rather than afternoon as had been the case each year before. This was to facilitate working parents. I paniced and told her I wouldnt be going. She, young as she was suggested that I inform the school of my situation but my stupid pride wouldnt let me do that. On the day of the meeting I was "sick". My eldest son went that year, my younger son went the next. Dont anybody went after that.
Over the years my weakness made the disease stronger. My insecurity fed it and my fear nourished it and made it grow. I regret all the occassions I missed out on because I was too proud to ask for help. To vain to admit that I might need a hand to hold or an arm to guide me. I refused to think of myself as disabled though I was more disabled than many people with far more serious disabilities than I had. I remember who the first person was that I told and I remember that it was somebody in a Yahoo disability chat room, a total stranger and it felt good. I also remember how kind he was telling me how I must find life very difficult coping with my problem especially trying to raise my daughter alone. I later learned that he had been shot aged just twenty two and was quadroplegic. He chatted to me with the help of a voice activated computer lying flat on his back in bed where he was forced to spend most of his time. I cried.
I cried a lot after that and for quite a while. I cried for all the years I had wasted nursing my fears and worries and i could not help asking myself what I was actually scared of. Little by little my life began to change. I still have my disease but it is mine, I have it, it no longer has me. I go out, if i need help I ask for it. If I fall down ill get back up and if somebody feels like laughing at me, well so what, I try to feel good that I have made somebody smile. I joined a dating site and have met several very nice people and can honestly say not one of them was put off when I explained to them that we would have to hold hands on the first date. Some thought it was a chat up line and I now have giggles because of my condition instead of tears. Dont get me wrong if a cure was found tomorrow id be in that queue but for now I have learned that life goes on regardless of our fears and I cant help asking why we waste so much time being scared of nothing at all.