Stories From the Edge of Blindness

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


December 2010

The RP Anti-Social Predicament

Recently, a fellow blogger (whose blog, Delph’s Lair, you should really check out), wrote about an evening out with his wife and braving the unfamiliar social setting.  It really got me thinking about how isolating it can be to have RP; how we isolate ourselves, sometimes without realizing to what extent. I am first to admit that I tend to go to the same places with people who know about my RP, so I can feel pretty certain that I will be safe and comfortable.  After reading his post,  I began to reflect on the challenges that face an RPer in social situations.

I don’t want my RP to become something that I allow to control my life and my choices,  although certain social settings are a total disaster waiting to happen.  For example, the roving cocktail party; open bar and finger foods spread out on tables around the room and not a chair in sight. The idea is that you walk around gracefully with your martini and your little plate of fancy appetizers, mingling with all the star fuckers in the room.  The problem is that they don’t like it when you bump into them and drench their designer duds in vodka and olive juice.  I can’t imagine why.  Now, truth be told, I am not really someone who would go to a cocktail party and mingle with the star fuckers anyway, but you get the picture; walking around with drink in hand while being expected to be graceful, sociable and cool, presents a pretty huge challenge for someone with limited peripheral vision.

Another outing which can present challenges is going to the movies.  Those of us with RP are often afflicted with night blindness and just don’t do well in the dark; the RP eye doesn’t adjust.  So, if you are going to the movies with someone who has RP, for fucks sake don’t be late.  I always get to the movies early to ensure that the theater lights will still be up and I will be able to actually find my way to my seat.  I won’t even go into the theater anymore if it has gone dark.  A regular sighted person can walk into a dark theater and after a minute or two, their pupils will dilate appropriately and their eyes will adjust to the dark; someone with RP walks into the dark and the darkness doesn’t fade. On one auspicious occasion, I walked into a theater during the previews and was faced with what looked like an empty row of seats swimming in the sea of darkness; I put my hand out to feel for the chair back, but instead found myself feeling up the neck of a strange man and proceeded to fall into his lap and knock his popcorn to the floor.  He was pissed and I was humiliated.  I also always make sure that I go to the restroom before a movie; trying to leave a dark theater when you have to pee and can’t see a damn thing is asking for trouble or a spill down the stairs.

My personal most dreaded events are those that take place outside on super sunny days and last for hours and hours amid throngs of people.  Even if my retinal cells weren’t dying, I would not be a fan of the sun or the heat, but the RP makes it that much more uncomfortable.  I tend to keep my eyes focused on the ground and away from the glare of the sun, because the minute a spot of that sun gets through my sunglasses, the world turns into white nothingness and the pain starts.  I just don’t get that much enjoyment out of watching people’s feet for hours on end and I can also do without the guaranteed head and eye ache at the end of the day.

It may seem grim, but a life without cocktail parties, late movie arrivals and long crowded outdoor events, isn’t really all that bad.  There are still great restaurants and comfortable bars and dinner parties; movies with people who know how to be on time and dvd’s and blu-rays; hiking and walking with cool jackie’o sunglasses and big floppy brimmed hats.  The path may sometimes be harder to find but it is always there to be found.


Habitual Fear

I have felt so silenced lately; by worry over the future and anxiety over the day-to-day.  I have totally let myself go.  It is as if I punish my body for what my eyes are doing, or maybe my eyes have led me to complacency about my overall health.  Maybe I am just a lazy fuck who is afraid to leave the house.  Or perhaps it is just this moment, this single moment clouded with self disappointment.

When I see myself through sparkling fantasy glasses, I am writing every day and materializing the sheer genius that is my book.  I am thin and gregarious and full of light.  So why is it that I feel heavy, as if the burden of who I have so long perceived myself to be is keeping me motionless.  I sometimes think that I keep myself isolated and unproductive out of a sort of habitual fear; safe in the misery and the dark and the quiet.  I get consumed by these dark days and turn to the arms of self-doubt; I chastise myself for not being better, thinner, prettier, for not writing and not living.  In my heart I know that all I want to do is write my book and there is even a part of me that can identify with the possibility that it might be really good and that I actually have something to say, but then the old tapes play; the tapes that tell me of my worthlessness and my failure to be anyone other than who I am.

When I was first diagnosed with RP, I had a fleeting thought that it was a punishment for having been so obsessed with my weight for so long.  I have believed for most of my life that being overweight meant that I was unlovable and without value.  I have been overweight for most of my life.  I always thought that people felt sorry for me when I walked into a room and I often turned down invitations because I was ashamed of my body.  Then came RP; then came the reality of going blind and dealing with all the day-to-day struggles of being different when all you want is to be invisible, to blend.  Isn’t going blind a bigger deal that the extra 20 pounds I can’t ever seem to shed? And does being overweight mean that I am not a good person, not a good writer, not good enough?  What the fuck does my weight have to do with my value as a person?  And yet I feel worthless, muzzled, squashed.  I keep hoping that what I see through the sparkling glasses will become my truth and that I will truly feel the value of who I am.  I hope that going blind will help me finally see.

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