Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.


November 2010

The Gloves or No Gloves Dilemma

One thing that RP gives and gives and gives, is the constant reminder that you can’t take anything for granted.  What once seemed easy or effortless becomes a struggle. Something that at one time took twenty minutes can take more than an hour and you find yourself having to constantly check your work. For example,washing the dishes.  As my vision has deteriorated, I have begun to notice that the dishes I have washed are increasingly unclean.  I get up in the morning to a drying rack full of dishes that are covered in food specks; or at least it feels like they are covered in food specks, because I can’t see the specks with my withering eyes.  This brings me to the glove dilemma.  I wear dish gloves when washing the dishes to protect my hands from the hot water, but I clearly need my hands to feel whether or not the dishes are actually clean; so do I abandon the care of my hands or re-wash the dishes most days?  I also must mention that my gloves are sort of punk rock purple, which makes me want to give them up even less.  Gloves or no gloves; sounds trivial I know.  Give up the gloves and get on with washing the dishes, or don’t and who really gives a fuck.  I would probably feel the same if I didn’t have RP.  It isn’t that all the challenges that come with RP are so tragic or insurmountable, it just feels like they shouldn’t be challenges at all and some days it really pisses me off.

The Purgatory of Sight

I am not a religious person, but purgatory always seemed like a really tough place to reside.  You are neither here nor there; you don’t possess the luxury of knowing that your eternity will be spent either strolling over the luxurious landscapes of Heaven or navigating the sweltering rocky terrain of Hell. It is an undefined space of utter uncertainty, invisible and nowhere.  At this particular stage of my RP, I feel as if I am in the purgatory of sight.  I am neither sighted nor blind; I feel invisible, yet vulnerable all the time.  I find that I either exhaust myself with the effort of trying to pass as a sighted person, or I become saturated with anxiety at the thought of having to explain RP.  I usually give the short answer, ” It is like I am going blind from the outside in, as if the world is becoming a smaller and smaller tunnel of light as the disease takes its course.” But for now, I sit and wait in this purgatory.

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