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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

Blindness

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.

With a Little Help from Welbutrin

My head is above water, but I am not floating. The air still tastes of ash, the remnants of a battle lingering in my eyes and in my throat. Depression is the zip tie on my tongue, the shackle on my ankle, the burden that sits heavy in my bones. It hangs on with determination, fades out of focus slowly, but it does not defeat me. I have teeth that bite back, and a voice that still wants to be heard. I go to the doctor, tell her I need help, feel the volume rising. I slip a pill into my mouth, feel the ground beneath me, see the sun is still in the sky, reach for it. I know there will be another sinking, another descent into the shadows, but for now, l let the light in, feel the glow of it on my face, and take a small step forward.

Taking up Space

I woke up yesterday feeling a bit better, thinking this bout of depression had plans for a short stay.  I was a fool.  By the afternoon, I wanted to break something.  I wanted to scream and slice myself free of my skin.  I wanted to get lost in the wind, become invisible, silent. 

When I say my blood is gloom, I mean that it weighs me down like a thousand shadows forcing their way into my mouth, filling my eyes with pin pricks of hateful images.  Depression is a slick spill of oil that leaves bruises under your skin, a chemical leak that taunts as it smashes your breath, a stain that sticks to bone.  It is what taints my blood, turns my heart into turmoil; a slow churn, a bitter lip, a death in the eye. 

It became clear yesterday how fat I am, how much space I occupy, no matter how hard I may try to disappear.  My failings, my grotesqueness laid out before me like a book of horrors, but it is a book whose pages I have scoured for a lifetime.  I did not need to be told what I already know.  I am taking up too much space, hating myself for it; no one should know I am here. I gave up dreaming long ago. 

Darkness steals the mere idea of joy, burns it up with a spark from a cruel tongue, my tongue.  When I lie down, I feel my heart beating with confusion, sometimes too fast, sometimes too slow; never easy, never rhythmic, never comforting.  When I close my eyes, I see the lights that come as a harbinger of blindness, indigo triangles that stab and flash and tease.  It is never quiet in my mind.  I cannot move or laugh or love.  Depression has me in it’s grasp; she whispers, she lies, she imprisons me.  My strength is ash that sullies my own hand. 

Storm

There is a storm in my head, a rage that chokes me, imminent disaster that pricks the tip of my tongue. My skin is so heavy, scratchy like a blanket in the heat, filthy with the detritus of hiding inside it for too long. These are the days I want to scream and run into the mouth of the sun, burn the pain until it is ash that can be carried away in the wind. I am trapped in a mind that can’t forgive, behind eyes plunged into darkness by a laundry list of disease, under the relentless thumb of depression. I write from this place for relief, catharsis, but also as a looking glass, a pinhole into unexplainable sadness. If you have been here, you have tasted the heart of the storm; if you haven’t, maybe what I write, while in the grip of the disease, will help paint a picture. Maybe I am just a self serving asshole, stuck at seventeen, unable to move beyond loss. Most likely none of it matters, not the words or the feelings or the bruises I inflict on myself.

As I tried to fall asleep last night, images of the last time I saw my mother came into my mind; I felt terrified and anxious, as if the memories were needles under my skin. I begged my mind to shut the images off, to let me sleep. I took a Xanax. I thought about taking a hundred Xanax. I can’t remember how long it took to fall asleep.

Today I couldn’t move, couldn’t do the everyday things, simple things, brushing teeth, combing hair, making tea. I felt deep hatred for myself. I wished I could disappear into a place so quiet and a body so tiny, no one would ever be able to find me. I lost all direction and forgot to feel time passing over me. It rained all day. I closed the curtains to block out the sun.

Tonight I am awake, unable to sleep, again. I can feel my heart breaking, falling into a chaotic rhythm that will shake me with brutal force. I am terrified to lie down; it’s worse when I lie down. I feel as if every part of me is defective, failing, a reminder of my weakness. Perhaps I showed up too late, for dreams and joy and the happy ending we are all supposed to be searching for. I wonder how long it will take to fall asleep tonight…..

Shades of Bleak

The darkness is swallowing me up again. I exist in a confined space, one part sadness, the other anger; sometimes the two become indistinguishable. I am a flame of rage in a freezing wind, burning and extinguished. I am a hollowed out heart, a fade to grey, a bird who forgot she ever wanted to fly. Even in the greenest of pastures, the bleak shades of my nature take over and I wonder why sorrow is the language I know best, why the fire dies inside me every time I begin to feel even the slightest glimmer of warmth. I am selfish, ungrateful, vision narrow, hands like ice. Hope has no colour here, no texture or sound.

I am a sliver of bone on a quest for escape, greed in a cruel fist, a lie that waits at the back of the throat. I pop pills, drown in booze, tie myself up in knots that always unfurl. I am steps never taken and a road grown over with brambles. I am the thorn in a dark night, unkind laughter, vapid tongue. I try so hard to become fiction, to become wind, to become the storm.

I still allow myself to wonder, does the uncovering of darkness shed light? Can wings grow if they have never known the sky? Tonight, I wait for the rain to cleanse me, or perhaps just wash me away.

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.

Hope

Ever since my RP diagnosis, I have shied away from hope. Not a coquettish kind of shy, but a hand in the face, get the hell away from me kind of shy. I didn’t see the point of getting into bed with hope; I was all about getting on with the business of being blind, dealing with what was real and imminent. I saw hope as a tease, a liar, a villain. I refused to be prey to its allure. Until now.

Hope is still a mind fuck, but for the first time, I really want to be fucked. I want to be taken by hope, my thoughts flooded in it, my skin saturated by it. I want to fall into the surrender of hope, run barefoot, fly, forget.

When RP came into my life 19 years ago, cataracts came with it; in those 19 years, I have seen lots of eye doctors who told me that the cataracts couldn’t be taken out.; they were too small, not ripe enough, needed to be watched. I figured they were here to stay, just like RP, and I didn’t let the sexy face of hope tell me different. Then I moved to Ireland.

A couple of months ago, I saw an ophthalmologist in our town who had something different to say about my cataracts. She asked why they hadn’t been removed and told me that she didn’t see any reason why they couldn’t be removed. She said they must be driving me crazy, and gave me the name of a cataract specialist.

The cataracts are right in the centre of my visual field. Everything I see is blurry because of cataracts. They increase my light sensitivity so much, some days I am in tears from the pain. They give me double vision and fuck up my focus so I can’t read regular books. They have stolen colour and texture from the world and I am not ok with them anymore. I want them out.

I want to see all of the vibrant shades of green that cover this country I now call home. I want to turn the pages of a real book, discover what’s inside. I want to go outside without a hat, open the blinds and the windows on a sunny day and not be in pain.

Next week, I see the cataract specialist, who will decide the fate of the quality of my remaining vision. I know he may say what all the retinal specialists before him said, but this time I am bringing hope along for the ride.

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.

Holding onto the Rain (Part 1)

I have been putting a lot of pressure on myself, feeling like this post should be epic, an explosive expression of my feelings and the unparalleled beauty of this country I now call home. But, the words are pale and fall from my fingertips in stutters. It seems that writing about joy is not in my wheel house; I have connected with the words that accompany tragedy for so long, I sometimes fear that I am only half a writer. But, life is also filled with vibrancy, and I want to write about all the shades of life, not just the dark shades; I hope even a fraction of the colours of my new home come through.

I have learned a lot about silver linings this year, about what is meaningful and what can been seen through the deepest darkness. The year began, for me, with unyielding physical pain that increased with the months, and then the world was thrust into battle with a virus that continues to run rampant. I stopped sleeping, I started eating more cake and drinking more wine. I became unrecognizable. I was quietly turning old before my time.

But, coins have two sides and one of them is always shinier than the other. Despite the pain and the virus and the weight, life long dreams came true. My book, “Things My Mother Left Behind”, was published by Potter’s Grove Press, and Joe and I moved to a place I have dreamed of living my whole life, even though I had never been here. I feel so incredibly lucky, and true to my nature, I also feel guilty for my good fortune. Perhaps I am a coin as well, always moving back and forth between the two sides of my own heart, never still, never in rhythm.

The story of our move begins with what I am more comfortable writing about, with drama, with shadows. It begins with a villain, a human vulture who bought our apartment building in Los Angeles and began to dismantle it the day he signed the deed……….

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