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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

August 2020

Audacity

The debut issue of Kate Duff’s Audacity Magazine is now available, and it is Gorgeous. It is filled with wonderful interviews with a diverse group of artists, including the incredible River Dixon.

Remembering How To Breathe

It’s been a rough week. Lots of tears. Lots of sun falling out of my mouth, leaving shadows to choke me and change the taste of the landscape. When I feel this way, all I want is to disappear, to blend into the chipped paint, hide beneath the floor boards. I cry while looking at cooking shows. I cry sitting at the computer, washing dishes, riding in the car watching the filthy city shrink under the waves of heat that oppress and burn. I am coming unglued. I have forgotten how to breathe.

In getting ready to move, I sink into the lives of people I have loved, people who have died. I am tearing away scar tissue, leaving wounds vulnerable to the teeth of time. I am awash in memories that leave me desperate for youth, for the feeling of my mother’s arms around me, for the delight in my brother’s boyish laughter, for the scratch of my father’s beard against my cheek. The weight of missing people presses against my eyes and taints the color of the sky. I am coming unglued. I have forgotten how to breathe.

I am tying up the loose ends of my broken body, retrieving my white canes from their hiding places, spending day after day in dental torture chairs, wishing I hadn’t allowed myself to get so fat. My heart has been buried so deep beneath the flesh, I no longer recognize its rhythm against my ribs. The mirror is my punisher, the fist that reminds me I have failed again, that I will never be good enough. I am coming unglued. I have forgotten how to breathe.

My book got a mediocre review. It crushed me. It pissed me off. It left me wanting to quit writing, to burn through the lines on the page, scatter hope into the dirt. I would have preferred a scathing review to the placid temperature of the three star review. Intellectually I get that my writing isn’t for everyone, but between love and hate the color drains away. It is easy to forget that it is only my heart on the page, my stories of coming unglued, of forgetting how to breathe.

But, life is a coin. Tarnished in some places, sparkling in others. It is sadness and joy passed through fingers, dropped and forgotten, discovered and cherished, held tightly against your palm. Life is the shadow and the light, the dream come true and the longing that is shattered. I am not unscathed. I don’t want to be. I sit in the center of what hurts, because I know that is where joy also lives. Sometimes I need to come unglued, so I can remember how to breathe.

Into the Center of the Kaleidoscope

To begin with the obvious, this year has been challenging, painful, demoralizing and heartbreaking. It has also been joyful and illuminating, an adventure and a dream come true. Some days, I feel guilty for the good stuff, for feeling true joy as the world breaks into pieces. But, we have to grab onto the good stuff when we can.

For me, this year has been painful, literally, as I have been struggling with frozen shoulder, not sleeping because of the pain, and unable to use my right arm with any regularity. It has been demoralizing and I have spent many nights awake and in tears, but nothing could overshadow the dreams that have blossomed right in front of my eyes.

For as long as I can remember I have dreamed of having a book published. I never imagined I would find someone who wanted to publish my work, who would believe in what I do and put their own time and energy into making my dream a reality. I hope River knows how incredible it is that he has chosen to do this for so many writers who feel lost and uncertain. I will never be able to adequately thank him. He has been an inspiration to me through his writing and his work as publisher extraordinaire. I am so proud to be a part of Potter’s Grove Press. If you want to check out the two readings I did, you can have a peek at my YouTube Channel. If you would like to buy my book, “Things My Mother Left Behind” (Potter’s Grove Press,) you can pick it up on Amazon.

Some other Giant and Joyful news……Joe and I are moving to Ireland, in October. It is another dream come true. I have wanted to live in Ireland since I was a child. It may seem crazy, because I have never been to Ireland, but I always knew it would feel like home. It has been a really painful and trying decade for me and Joe, and this move feels like we are finally getting the chance to step into our life in ways we have long dreamed of. I can’t wait to write my first blog post from Ireland, my first poem, my first story. I can’t wait to feel dreams alive in my eyes and on my tongue. I am ready to fly into the center of the kaleidoscope. Dreams

I never thought…

I never thought I would be so painfully unrecognizable. I never thought I would be so fat that I couldn’t tie my shoes. I never thought I would get old. I never thought my bones would ache. I never thought I would be unable to lift my arm for a year. I never thought I would be so obtrusive and yet so invisible. I never thought I would amount to much. I never thought I would lose my hair. I never thought I could disappear so easily. I never thought I would be blind.

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