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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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Waking from a Dream

I have wanted to write, truly, but my groove is buried somewhere between Los Angeles and Ireland and that is a lot of fucking space to cover. I have four projects in stasis, sitting in folders that mock me every time I switch on the computer, but instead of waking them, I go online and shop for things I don’t need. My imposter syndrome is in hyper-drive and no matter how hard I try, I can’t seem to find any ground beneath my feet. Clearly, ghosts travel.

When we first got to Ireland, I only allowed myself to see the positive sides of the move, of which there are many, rather than acknowledging that it was a big deal to leave a place I called home for most of my life. I never loved Los Angeles, never felt that it fit me, but my stories are there, my roots and my blood, and we didn’t get to say goodbye, not properly. The pandemic and an evil landlord prevented us from stepping into this new chapter of our lives fully, with eyes open and hands steady.

It took me a year to finally feel the gravity of moving, in my 50’s, from a home we were being chased out of to a country I had never visited, all during a pandemic. It sounds insane, and perhaps it was a bit, but it also felt exciting and brave, like a dream. I have wanted to come to Ireland for as long as I can remember, to see where my Mom’s ancestors lived and loved, struggled and triumphed. I have wanted a quieter life for years, a life away from the knife edge that Los Angeles has become. I have wanted to see where Joe’s heart has always truly lived. Ireland doesn’t disappoint; it offers a quieter way of life and scenery that takes your breath away each time you step outside, people who see each other rather than just look through each other while reaching for unattainable pedestals, and a sky that is filled with stars, rather than helicopters that shine spotlights on the desperate, the hungry and the violent. We made the right choice when we moved to Clonmel, but the problem is that I have never learned how to travel light.

I dreamed that I left pieces of myself behind, pieces that I have been trying to stitch back together for so long, but in the dream, I believed I could be whole without them. I convinced myself that I had a chance to find a voice, to climb out of the waves and stand on solid ground. I believed I could be who I imagine myself to be when the world rests in darkness. I woke to the familiar sensation of drowning, realising that I must have closed my eyes and stuffed my demons into a suitcase, hoping it would stay closed, but it was too full and the latch broke.

I find myself in a new landscape, but I am still covered in shadows, still facing the same ghosts that have traveled with me my whole life. Maybe this time I can learn to see them differently, to put them back into the suitcase with care and welcome them when they break open the latch, knowing that they aren’t to be feared, that they are the darkness in me, and darkness can be just as beautiful as light.

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.

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

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