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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.

Category

Loss

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.

Book Launch and Poetry Reading

I know that Tuesday will be here sooner than I can imagine, that I will be holding a copy of my book in my hands, reading poems from it’s pages, still feeling as if it is all happening to someone else.

When I was a little girl, I wanted to be a writer and/or one of Charlie’s Angels. It seemed like having my books in the shop windows and catching bad guys, would make a pretty rock and roll kind of life. The Angel thing really didn’t pan out, but the dream of being a writer and having a book published is one that I have been working toward for a lifetime. It is a dream that, at 51, I am seeing come to life. I don’t forget for one second how lucky I am, how all of the love and support and encouragement I have received has made this dream possible.

I hope that you will all be able to pop by my Book Launch/Reading, which will be my very first ever book launch and reading, so please be gentle! Here are some links:

The reading will be streamed through my Author Page on Facebook. 


You can buy a copy of my book on Amazon 


I will also be selling signed copies through my website 

My endless thanks goes out to River Dixon, a brilliant writer and publisher, a man who makes dreams come true!!!!

Carrie Ann Golden’s Interview Series

I am thrilled and honored to have been asked to be a part of Carrie Ann Golden’s Interview Series. Carrie Ann did a guest post here on my blog and I adore her and her writing. This truly is an incredible community and I am so grateful to be a part of it. If you are interested in reading the interview, you can so so here.

“Things My Mother Left Behind” Available for Pre-Order

I am sitting in my very quiet writing space, typing this in a state of simultaneous disbelief and total joy. I am thrilled beyond the sky to announce that my book, “Things My Mother Left Behind”, is available for pre-order, on Amazon. This is a life long dream come true for me, and I will be forever grateful to River Dixon; an amazing writer, publisher extraordinaire and founder of the incredible Potter’s Grove Press.


To pre-order the ebook version of “Things My Mother Left Behind” you can go here. To visit my Amazon Authors Page, you can go here. To explore the beautiful and diverse catalog from Potter’s Grove Press, you can go here.

I am so grateful for all of the love and support I have received from this incredible community over the years; it has given me a sense of courage I never thought I would feel, and helped a life long dream become reality.

Missing the Dead

I am absolutely thrilled that my first acceptance from a journal this year came from Nine Muses Poetry, a journal that has published so many of the contemporary writers I admire. My huge thanks to editor Annest Gwilym for including my poem as part of this month’s Special Challenge. If you would like to read it, you can so so here.

Your Promises are Collapsible

First and most importantly, I hope all who are reading this are safe and well and home. I am, as ever so incredibly grateful for the support and presence of this community in my life!

Continuing with my recorded poetry series, today I am offering the fourth of six poems originally published in Chantarelle’s Notebook. I hope you like it. Video credit goes entirely to my husband, Joe Richardson.


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?

All I Have Right Now is Poetry

It has been a turbulent year. I haven’t done a lot of writing and almost no submitting, but I did have a few poems come out this month. Right now, it is all I have to share.

I already shared the poem in Orange Blossom Review, but if you would like to have another peek, you can do so here. My poem “Wax” appeared in Fresh Air Poetry, a new publication from the former editor of Amaryllis, Stephen Daniels. I also have a poem in this months Burning House Press that you can read here.

I Am Not Blind When I Close My Eyes

I have been writing about a storm, hiding behind the clamor of the rain. I have been watching my feelings twist into the drain, willing away their texture and weight. It is futile; this hiding, this twisting, this willing away. I am sinking but standing still, static but being torn to pieces. I can no longer see who I was and I can’t remember who I wanted to become. I used to feel the fleeting joy of sparks on my fingertips. Now, it is just a dullness, an ache. All I want to do is run away. The gloom swallows my steps every time I try and escape.

I haven’t wanted to write about my father; maybe because I was afraid that if I wrote about him, I would lose all hope of escape from the grief. But, I know better. There was never any hope of escape. My father has dementia. Every day, I grieve him, a slow grief. He fades the way my vision fades, pieces of his memory growing dark, trapped in shadow. I am consumed by sadness and a constant feeling that I am failing him, because of my limitations, my blindness and my inability to put my emotions aside, to give even the perception that I am not coming unglued.

I wanted to at least start to share this story today, but even tearing away a small piece feels like a betrayal. I am exhausted and haven’t felt the earth of my life in so long. My voice is numb and I feel emptied out, blank. There is no path. No direction. No light. There is only the weight that comes with watching him forget the shape of his life, knowing that he has forgotten my name, and will one day forget who I am.

For 3 years, I have been watching him become someone else. In many ways, I am closer to him now than I was when his brain was crisp and unclouded. I can finally be what he needs. I finally have value. But, I am losing myself. Joe and I are the only ones who are here, living close by and helping. We have been so alone in this and I am afraid of the tole it is taking on Joe. I don’t talk or think about much else; it is as if I have stopped breathing, as if I am disappearing not only from my father’s memory, but from the grasp of my own life. I have abandoned my writing, but I have come to peace with that. I am doing what I have to do, for now.

I am unsteady, unreliable, untethered. But maybe, for just a moment, I can believe that when I close my eyes, I am not blind.

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