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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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poetry

Horizon

Some days I wander around my house, feeling lost and disconnected, no grip on the texture of the morning or the space around me. I write about having forgotten who I am, but the truth is that I have never really known. My life has been a series of failed attempts at being who I believe others want me to be, failed attempts at being kind, having substance, living with interest and curiosity. I am not curious. I am simply hanging on, waiting for something that never comes because it has no shape, because the edges are dull, because the layers are a fiction, a fantasy, a ruse. I keep hoping that the horizon holds something for me, something that will glue me back together, lift me out of the ground. The horizon lies; it looks close enough to touch but is forever looming, taunting, out of reach.

When I was young, I thought I was supposed to be beautiful, was taught that beauty lives on the skin and the physical impression you leave behind when you have left the room; no-one talked of the beauty on the inside. The inside can’t be seen. I tried to be beautiful, but beauty is the luck of genetics, a luck I didn’t have, so instead, I retreated into shadows and marked up my skin; anything to be unseen. Being unseen is lonely, grows tiresome, has a weight that becomes unbearable. It is also an addiction, a habit, a way to give meaning to your life . It leaves you wandering and lost, looking for shapes in the darkness, coming up empty handed. But still you search.

I came to define myself by what ailed me, by loss and blindness, the afflictions of self loathing and now those that come with the cruel strike of the clock. I will always struggle with the emptiness and the wandering, unable to take shape or give off light, but I also understand that the inside can be seen, through poetry and art and acts of kindness. Perhaps the horizon isn’t a villain after all, but is there to guide the way, to remind us that life is both beautiful and unruly, cruel and abundantly generous.

An Old Cloak

I find myself adrift between an old life and a new one, wishing for reinvention and fearing the dark corners of my heart will be discovered, laid bare against the startling landscape. I always manage to sully what is beautiful, slash deceit into that which should be pristine. I long to shed this old cloak, moth eaten and weather worn, but it is so heavy. I am faced again with the reality that no matter which way I turn, or how many masks I carefully construct, it is the same tattered image of myself that lurks in every crevice of the sky. I look to the clouds for comfort, searching for a smattering of memory, my mother’s fingers soft against my cheek, her voice singing me to sleep. I search for an identity that burned brightly, before death and blindness shattered my self confidence.

I can remember a time when I felt, not whole, but able to stand, to inspire and satiate longing. I can remember a time before this shell incapsulated me, when I could look away from the strange curves of my face, forget that I wasn’t what I was supposed to be. I remember a time when feeling different was to feel powerful. I wish I had saved the pieces of the moon that rained down on me when I was vibrant, before I became pastel and mute.

I know that one day I will have to descend from the in-between, that my old cloak will still be with me, firm across my shoulders. But maybe, this time, I will find new threads to stitch the holes, in colours that come from neither memory nor darkness. Perhaps I will find the words to shape new skylines, new textures for what lurks beneath stones and shells and rubble. For now, I remain adrift, not in the shadows, but one of the shadows. For now, I am undetectable.

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

A Vibrant Whirlwind

I feel as if I am caught up in a vibrant whirlwind, a state of elation and disbelief. To have my words out in the world, to see my book in the hands of people I care about, is a life long dream come true. I will never be able to adequately thank River for helping my dream become a reality.

Yesterday was such an exciting day for me. My book was officially released and I did my first ever poetry reading. If you didn’t have a chance to join me for the reading yesterday and would like to have a peek, here is the video.

https://www.facebook.com/watch/live/?v=653076411957024

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!!!!

Where Sound Disappears

As I prepare for my reading on July 14th, I thought I would post the final recorded poem from the series originally published in The Writing DisorderPoetry. If you are a writer who is interested in submitting your work to journals, I highly recommend sending something to TWD; they are publishing some really fantastic and diverse writers.

Darkness and Light and “Things My Mother Left Behind”

In just 6 days, my debut poetry collection, “Things My Mother Left Behind”, (from Potter’s Grove Press), will be officially out in the world. My heart and mind, my secrets and fears, will be in the hands of friends, and maybe even a few strangers, and I will have the immense good fortune of living through the fruition of a life long dream. For me, it is a light in these dark times that gives me immeasurable hope and joy, and somehow, it feels appropriate that my first book is coming out during a time that has been punctuated by loss and sorrow, as so much of my work explores these themes.

I believe that without the darkness, there can be no light, and the light that permeates darkness is one that shines more brilliantly, offering the most sustenance. As the light of a dream come true shines into my life, I am led into spaces of reflection. I am missing those I have lost, hoping they would be proud of me. I am grateful for the love I know and have known in my 51 years. I am grateful to have been given the gift of time and language.

My greatest hope is that my book will be read and that my words will offer comfort, clarity, a sense that we are not alone, maybe even a new way of seeing. For whoever reads my book, I hope that something in it resonates, that the words find a place in the darkness, and in peoples hearts.

“Things My Mother Left Behind” will be available through Amazon on July 14. I will also be selling signed copies through my website, and I will be doing a live reading via Facebook on July 14 @5pm PST. I hope you will pop by the reading. Links and more info to follow in the next couple of days.

As ever, my gratitude for this incredible creative community is overflowing. I am humbled every time I come here, by the heart, the talent, the support and the encouragement of all the amazing writers I have come to know.

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