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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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aging

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.

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.

Telephone Phobic, Demoralised and Smudged Out by Middle Age

I have to start this with a bit of a warning; it is possible I am getting a tad obsessed with ageing; aka, I may be in the throes of a mid life crisis.

For the minute, let’s just say I am in a bit of a contemplative space, steadfastly refusing to accept that I am no longer thirty five while complaining to my husband about my aching hip and arthritic knees. I am also about to have cataract surgery, which despite my knowing it is because of RP, still seems like an old person thing. But, I am thirty five (right?), so what the fuck? Fine, I am not thirty five. It feels like an affront that I am now officially middle aged, no longer desirable, and probably losing my memory earlier than I should because I spent so many years in and out of drunken stupors. But, I can’t deny that I also feel happy. How can one person possibly deal with such an opposition of emotions at once? I wish I could say I do so gracefully and with an open mind, but the truth is that I am not sure I really deal with the emotions at all. I hide under a rock, live inside a shell of inappropriate delusions, pretend I am not afflicted with a myriad of health issues, and sometimes, as the cherry on top of the denial cake, get completely smashed. It leaves me with one very burning question; why the hell doesn’t anyone tell you how fucked up getting older is and how it leaps on you overnight and out of nowhere? I would reject this whole ageing thing if I could, but time is stubborn and cruel and clearly in charge. I am merely a demoralised and somewhat sad woman who is being systematically smudged out.

I have learned however, in my years of acquiring wisdom in some pretty crazy ways, that there is always a flip side. Did I mention that I also feel happy? I do. I am living in a place I have dreamed of living for most of my life, I have an amazing husband and a wonderful family and I am alive. I am lucky; for all of my complaining, I do know that I am incredibly lucky. I am also angry sometimes and sad and confused and frustrated and joyful and playful and lacklustre and droopy and, well, you get it; it’s that human condition thing. At the moment, I feel disbelief about the avalanche of middle age, terrified about and grateful for the impending cataract surgeries, and insanely fortunate to be able to walk down my street and see the beautiful landscape around me. I am also feeling sad because it is getting increasingly harder to read, but hopeful that the surgeries will remedy that somewhat….a post for another time.

Palatable

In my middle aged face, I see both echoes of youth and glimpses of what I will be as an old woman, but my reflection today is muddled. I am unrecognisable. My eyes grow cloudy with the passing of days and the shape of my jaw takes on the weight of decades steeped in grief. I can no longer turn the odd curves of my face into something palatable. My features change with the seasons, grow heavy with the stress of caring for loved ones, watching them die. One day I will be the whisper of a wraith, but today I am clay moulded by the hands of time, prisoner to the piercing fingers of the clock. What was colourful is now grey, no green pastures on the other side. I am aching bones and sallow skin and  scars born of an unwelcome wisdom. I am creaking knees and pain so sharp, it wakes me from sleep, although my sleep is shallow now, plucked from my grasp by hormones that betray me, fill me with fire and sadness and anger, all without roots or reason. I am a farce of time, a perpetual act of coming unhinged. I am middle aged. I am invisible.

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