Stories From the Edge of Blindness

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


October 2015

Clay Pumpkin

Most days, I think I navigate the world pretty well; as if I can almost feel myself in rhythm with all the sighted people who traverse the streets of Hollywood.  I can get lost in the fantasy and forget that my lens is broken and I only get part of the picture.

Yesterday I was at our local Ralphs Supermarket, picking up milk, bell peppers and Muenster.  The grocery store is always a bit of a challenge for me; people, shopping carts and displays, all an array of accidents waiting to happen.  I always opt for the hand basket rather than a shopping cart because it just isn’t safe for me to drive any vehicle, motorized or not.

I was hit by a car in the parking lot of the Ralphs in this story, so I tend to take my time and make sure I am constantly scanning my surroundings. The problem is that I often think I am doing a pretty complete scan, but in reality, I am failing to look past my own edges.  These are the times when RP pops up and slams me in the face.

I found the items on my list and managed to get around the store and through the checkout unscathed.  This doesn’t always happen, so I was feeling pretty confident and, mistakenly, sure-footed.  As my usual routine dictates, I stopped in a quiet corner to change from inside glasses to sun glasses before venturing out into the sun and heat.  Did I mention there was a massive heat wave in Los Angeles?  I walked across the threshold of sliding doors and out into the heart of sweltering Hollywood.

Given my previous run in with a dark blue Accord, I took a long pause just outside the lines of the parking lot.  The traffic was thick and the whole neighborhood seemed to be approaching the store, so I stole a breath and waited until I thought my path was clear.  I stepped forward with self-assurance and crashed into a display of clay pumpkin pots.  One of them went reeling and broke into pieces on the ground;  RP singing its cruel melody to the sound of breaking pottery. Happy fucking Halloween.

Poetry and Blindness


I realize that I am a rubbish blogger, tweeter, instagrammer and facebooker.  I go along feeling as if I have just written a blog post and when I visit my site, I find it has been months since I have posted a single word.  The truth is, some days I have nothing to say or I am afraid to face the things I know I want and need to say, and some days I write as if I am burning and crazy and elated and drowning. None of which leads me to blog on a regular basis.

Although I have not written a blog post in a long time, I have been writing and rising out of the ashes of a disease that steals not only my vision , but my sense of self and purpose.  I always knew that I wanted to write, that the spaces inside the words are where I feel my truth, but I got lost in the murky waters of RP.  I wrapped myself up in the task of becoming a blind person and forgot that I am a person beyond my blindness.

Outside of this blog, I write poetry.  Poetry is really my first writing love; it is where my creative pulse was born.  A few months ago, after a 20 year hiatus, I decided I wanted to start submitting my poetry for publication again.  I had some things published when I was in my 20’s, but life got complicated, I put my writing voice on a high shelf and I stopped sending my work out.  Starting this blog got me excited about writing again and although it took years, I finally immersed myself in my poetry and gathered up the courage to put my voice back into the literary world.  I was elated when the first response I got was a positive one.

Heather Lenz, the poetry editor at Stepping Stones Magazine, accepted three of my poems for publication.  I am over the moon.  I feel reunited with my self and my passion.  I feel as if I have stepped out of the darkness and learned how to weave RP into the fabric of my life rather that allowing it to smother me.

I can’t say that I will become a prolific blogger; I am still trying to get a handle on that discipline thing, but I do think I will be blogging a lot more.


The two poems that have appeared in Stepping Stones Magazine can be read through the links below.


Tiny Voice




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