Stories From the Edge of Blindness

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


February 2011

Falling off the Edge

On a recent trip to San Francisco, my sister told me that she had read that San Francisco is in danger of destruction should the “big one” (earthquake) hit, but that surprisingly,  Los Angeles is not in danger of slipping off into the ocean as most people predict.  The idea of slipping off the edge made me think of RP and how it is as if my vision is sliding off into the abyss, into nothing.

It seems strange that slowly losing your vision feels like watching the world become more immense.  As my peripheral world slips away I imagine all the things I would have seen falling slowly into a blackness that consumes with a gluttonous joy.  It is as if the world has ceased to be round and has grown sharp edges that steal anything that comes too close; my vision walks a constant perilous tightrope along the edge of the world, and over that edge is a dark vast landscape of nothingness. Sometimes, when I feel unsure of my footing or my surroundings in general, I get the sensation that I am going to fall and that there will be no arms, no ground, nothing to catch me; as if I would never stop falling.

When I think about the possibility of blindness, I imagine it would be the loneliest I could ever be.

The Art of Passing

I used to work with a woman who taught a workshop she called The Art of Passing.  She is a transgender woman who had spent the twenty years before I met her perfecting the art of passing as a woman in the world; walking, talking, moving, standing and gesturing like a woman.  When I met her, I wondered if I would be able to understand her experience or she mine, as we had walked such different paths, but in knowing her I came to understand not only her struggles, but my own as well.

I knew what it was to feel the struggle of perfecting the Art of Passing; I have RP and I live in that purgatory of sight which forces you to choose between showing the world either a sighted or a blind person, because nobody can understand the state of being neither.  When I was keeping my RP a secret, I learned how to scan a room with subtlety and move slowly as if it were intentional, part of my personality.  When I did trip or bump into someone, I would laugh at my own clumsiness and say I had been that way forever.  I wore my sunglasses like an appendage and was accused of being ” too cool”, but I would just smile and shrug and turn away.  I told everyone that I had selflessly sold my car to help the environment and I just downright avoided any invitations to bars or darkened restaurants.  I looked sighted and therefore I was sighted.

Now that I no longer keep my RP a secret, I realize how terribly exhausting it was trying to pass as sighted.  It isn’t as if I wear a sign around my neck advertising my disease, but I also don’t try to hide it.  I just let myself and my RP, be.

On the Fence

It feels as if my life exists on the constant proverbial fence.  I am stuck between sight and blindness, despair and joy, thin and fat, failure and success.  I have never really been a total loser or particularly spectacular; I swim in my own ordinary sea with its murky water and unimpressive waves.  I have always felt sort of invisible and of no consequence, surrounded by extraordinary people with strong voices and vibrant personalities.  I am a pearl in an ocean of rubies in a world where only sparkling things have value.  I created this world and I keep it tidy and consistent, believing that residing on the fence makes me boring and unimportant and safe; I am beginning to wonder if this is really true.


The Bump in the Road

For the past month or so, every time I get on the computer, I find myself avoiding the link to this blog; I am twisted up with guilt at not having written and in despair over feeling like I don’t have a damn thing to say.  Perhaps this is the plight of the writer and I just need to roll with the punches, or maybe I am a lazy fuck who is terrified that if I actually keep writing I might have more to say than I ever imagined.  I know I want to be more and do more and yes yes yes, write more.  So why do I avoid my own blog?  Why do I consume bowls of popcorn instead of write each day?  Why do I fear my own voice and keep myself tucked away in the silence?  Not every post has to be genius and not every sentence has to be perfectly choreographed; it just has to be honest and it has to be me.

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