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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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summer

From the Quiet comes Poetry

Everything is so quiet and so very loud. Each step I take is labored, heavy and uncertain. I haven’t written much at all this year, or submitted or had much published, but today I opened my email to a lovely surprise. Issue 3 of Orange Blossom Review came out yesterday, and I am honored to have one of my poems in its virtual pages, amongst the work of so many talented writers. If you want to take a peek at the issue, you can so here.

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.

I Feel Sweaty, Oh So Sweaty

After I surrendered my driver’s license and was forced to become reliant on the completely unreliable transit system in Los Angeles, I  discovered that my days of dressing up and actually arriving places looking and feeling nice had disappeared right along with my sight and my ability to drive a car.

Los Angeles is hot and the damn sun never seems to stop shining.  Most days, I avoid going outside while the sun is raging its assault on the dusty streets, but venturing out is sometimes necessary.  The venturing days usually require some lengthy exposure to the sun and the heat, which offend not only my eyes, but also my skin and all the beautiful artwork that covers it.

Getting ready to go out always seems to take me forever, and it isn’t because I am getting dolled up but because I am trying to swallow my dread. I don’t like the feeling of sun on my skin, so when I go out, I get covered up. I prefer to wear long sleeves to protect my tattoos and a hat to protect my eyes.  I usually procrastinate by the door because I know the minute I open it, I will begin to sweat.

By the time I reach the bottom of my stairs and head out into the street, I already feel like I can’t breathe.  The sun overtakes me in a wave of utter misery and begins to suck the moisture out of my pores.  Every part of me feels sweaty.  I know my face must be taken over by a total look of disgust and the only thought in my head is getting out of the sun and into the air-conditioned shop or bus.

I know there is no possible way I will arrive at my destination looking anything other than damp and miserable, so I don’t even try to look good.  I don’t put on makeup or wear nice clothes. I don’t bother doing anything with my hair because even my head sweats and the hair sticks to my face under the constraints of my hat. I have forgotten what it feels like to dress up and go out to have a day of shopping or a quiet lunch by myself.  I only know the sun and the heat and the sweat.

I don’t mind sweating during appropriate activities like working out or gardening, but arriving at a restaurant in a pool of sweat just doesn’t seem right to me.  I know that there are more important things than dressing up and going out to lunch, but I miss feeling good about doing it.  I miss feeling pretty.  And most of all, I miss feeling free of all that horrible sweat.

 

 

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