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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.

Month

March 2016

Putting My Words Out There

Last year, I started writing more and submitting my work again after 20 years.  I feel my pulse in my words and putting them out there has given me breath and community and a renewed sense of self.

My most recent poems appear on Wildflower Muse. One of them is about RP, entitled “Ode to RP”.

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Spring Passes Over

Summer has cast it’s leering net over Los Angeles.  It is March and should be spring, but spring always passes us over.  Our coldest winter evening dropped to 50 degrees; hardly coat weather, but I wore my coat anyway because I knew it may be my only chance.  What am I doing here, in the home of eternal summer?  Summer is my enemy, my nemesis, the season that ignites the worst of my RP.  I check the weather forecast with dread; the numbers exhaust and flatten me.  I wish I didn’t have to go outside.

Light Phenomenon

The lights play tricks on me.  They disappear when my eyes are open and appear in kaleidoscope fashion when I shut them against my blindness. It always feels so strange to see more with my eyes closed that with them open in the dark.

There are a couple of light shows that are frequently repeated.  One is just a white light that looks like a tad pole and swims around and around in the outer fields of my vision.  The other is a cluster of bright bluish purple triangles that move around in random formation.  Am I witnessing the slow death of my retinas in light form?  Are the lights and shapes from an old visual memory?  Are my retinas trying to work with the limited cells that are left to them?  I have no idea.  I just know that the lights that turn on when I close my eyes are out of my control; just another slap in the face from RP.

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