I have Retinitis Pigmentosa. This may sound like the Latin for some exotic garden plant but unfortunately is actually a genetic disease that causes the cells in the retina in the back of the eye to give up the ghost in varying patterns with no fixed timetable and often several side effects..the most annoying one being eventual blindness. Right now I have a very limited tunnel of vision which blurs and distorts occasionally during the day depending on light and stress. My peripheral sight, what’s left of it is a white out. Additional blurring is due to a secondary condition called macular odema which is extremely annoying but at least comes and goes unlike the RP which kills the cells and then leaves them lying around like a load of old garbage blocking the remaining view.
For some RP comes swiftly. It can blind a man in under a year but for many lucky sods like myself it is slow allowing us to adjust with each little theft of vision over tens of years. It plateaus and stays still for months, years and then can suddenly change again. You never know how it will be when you wake up each morning so there is no schedule for complete sight loss just a dull plodding dulling of my favourite sense.
I am not a hero. My failing sight does not make me able to hear whispered conversations at 50 paces, kill 100 thugs with only my karate skills and a length of curtain rail nor does it make me pale and interesting. It pisses me off. I rage RAGE against the dying of the light (to entirely misquote Dylan Thomas). I covert others ability to still drive , to cycle, to jog, alone and independent in the golden evening light, to just wander to the city centre without anxiety and planning. I sometimes can’t bear to be with my friends who move with such sickening ease through my murky world. Compassion I scream in fury at myself. Be F***g Compassionate! But its hard and more and more I find I have been home alone for days and days. Time has passed and I have used every excuse not to face the world. Not to fall arse over tit in the world.
I hold my fear and fury close to my chest and stick it under my bed when I go to work or out with others but it is always there when I come home; a little yet monstrous ball of grief and terror with teeth. I refuse to be a ‘disabled woman’, a middle aged blind woman. To refuse to accept this growing part of me means I am constantly fractured, torn and confused but it also means I have freedom and resilience and can dream without the weight of potential blindness on my back.
So there it is...the beginning of my blog to which you are very welcome....just to note that with this blog comes the unfortunate potential for gobbets of self pity and winging to infiltrate the general claptrap for which I apologise in advance and will do my utmost to avoid. Also, this is not yet set up to be visual impairment accessible which is ironic but I am a complete luddite and anything technical will have to be done by someone else so apologies tto the VI readers. I will sort it out soon!