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Stories From the Edge of Blindness

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

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shame

Shame

This may be the most personal post I have ever written.  I write about a lot of personal things.  I write about depression from within the depths of it.  I write about blindness and fear.  But, I don’t write about what exists within all of these things, what creeps in through any crack that appears, what has been bred for years inside the very essence of who I am.  Shame. Continue reading “Shame”

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Stuck in the Escape

I feel sad this morning.  It isn’t new, feeling sad and writing about sadness; I do that a lot.  But, today it isn’t just sadness, or darkness or blindness, that is in my head and on my skin, it is shame. I have written about shame before, in regard to my disease and feeling different, but the shame I feel today has nothing to do with RP; it came long before blindness.
Continue reading “Stuck in the Escape”

Road Burns

I shared a Facebook post this morning from a fellow RPer which joked about inanimate objects exhibiting hostile behavior toward humans.  I often post these kinds of things, in the spirit of camaraderie and to give some understanding, through humor, to those who don’t know what it is like to live with RP.

I know that everyone has accidents.  Everyone bumps into things, trips and even falls on occasion.  I often get the, “that happens to everyone” remark when I talk about my collisions, bumps and spills.  But, when you have RP, it isn’t the same; it happens way more often and every time it happens it is as if  the door, floor, wall and RP are all slapping you in the face.  I have been cut, bruised and even broken bones because I didn’t see something that came upon me as if out of nowhere.  Today, it was the curb.

I was walking my pugs, Blossom and Jade, to our neighborhood park, and to get to the park you have to cross a busy street.  There is a stoplight, so it isn’t usually treacherous and I have crossed at this particular intersection so many times, I thought I could make it across without a major scan of my surroundings.  So, I started to cross the street, double dog leash in hand, when my youngest (only 10 months) decided it was play time.  I rushed to separate the dogs and get out of the intersection, and before I knew it, I was doing a tango with the curb and falling like a steel brick onto the sidewalk. The irony of my earlier Facebook share was not lost on me, even as I picked myself up off the ground.

My injuries were pretty minor this time.  I got a couple of skinned and bloody knees and a solid dose of reality and shame, but I still went to the park and got to watch my girls play.   it was just another day in the arms of RP and another intimate moment with the pavement.

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