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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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death

Untethered

I was in the car with my husband yesterday, Thomson Twins jangling in the background, when I started to think of what it means to be untethered.  I am parentless, floating without the anchors that rooted my bones to the earth, my blood to the sky. My identity was already fractured, unstable at best, but now I become the definition of loss each time I open my eyes to inhale the sun, each time I close them again to swallow the moon.  I have been emptied out so many times, turning to the memory of voices that fade with the passing of years.  I became old when I should have been steeped in youth, threw my eyes into the grave, forgot how to look to the sky for solace, for discovery.  I am recognized by the shape of my diseases, ailments that strangle my determination, but I don’t recognize my own face. I am the word on the page that erases itself but never stops searching for sound. I am a war, a need to be invisible and seen, to be silence and noise. Is this what it means to be untethered?

By Your Side

I have been in a bleak place lately.  It is a familiar place, a place of introspection where I can try to figure out what is bringing on the sadness.  I thought it was because of the shit storm of rejections I have been getting, but they were just the cap on feelings that were already dragging me under.  I have been feeling overwhelmed for so long.

After coming to the conclusion that it isn’t the rejections that are pulling me into the clutches of sorrow, I had to stop and breathe and look behind my eyes to see what has been troubling me.  This can, at times, be a herculean task, as I seem to be troubled far too often, and it is never just one thing. But, I have become good at peeling away the layers, seeing what lurks beneath.
Continue reading “By Your Side”

Mortal

My poem, “Mortal”, was published in WildFlower Muse in March of 2016.  I am posting it today in honor of the anniversary of my brother’s death.

Loss

I have been away from my creative self for so very long; consumed by grief and struggling under the weight of loss.  For almost three years I have been defined by illness and death.  I assumed the roles of watcher and caretaker.  I gave over my heart and my strength.  I don’t regret it.  I truly got to know my brother and to show him how much I loved him.  I wouldn’t have chosen to do anything else but be there for him, as a friend and a sister and to try to quell his fear.

Now that he is gone, I am led, inevitably, to thinking about how much of my life has revolved around loss.  Loss of loved ones, loss of freedoms and of course, loss of vision.  There are so many things that just aren’t there anymore. It is as if my mother and my brother and the edges of the world have fallen into an abyss that I will never be able to gaze upon or reach.  I realize how losing my vision is so much more like a death than I had ever known; they are both disappearance, silence and blackness. Some days it is as if I have forgotten that my brother has gone and I pick up the phone to call him and tell him about a new mystery show I have found that I know he would love; I forget how much of my vision is gone and I walk along the sidewalk as if I can see the whole world, until I  fall into shadow and watch the sidewalk fade away.

Perhaps I fall into these moments of forgetting so I can cope with all the other moments; when I wish that I could hear my brothers voice, feel my mothers comforting arms and look into the brightness of the afternoon.

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