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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.

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.

Convenient Truths by Susan Richardson

I am over the moon to be a part of MasticadoresIndia! Huge thanks to editor Terveen Gill for bringing me into the fold of her incredible journal!

MasticadoresIndia // Editora: Terveen Gill

A collage of mouths wide open with teeth showing and a display of rage
Image Source: Snappa

She is a tapestry of fiction,

a cloak constructed from convenient truths.

Her sentiment slithers,

a hissing whisper in my ear,

dripping in strands of insincerity

that creep down my neck.

Her memories are fabrications,

shoved into the back of her mouth

to keep the truth from coming out.

A vain attempt

at gobbling up sorrow for herself.

I stand in the shadow of grief,

eyes filling with tears,

fury pulsing in my clenched fists.

She bleats emotion,

takes possession of emptiness,

puncturing the air with the razored sting

of a woman seasoned at doling out deceit.

She forgets I was there,

when she said my father

was no longer a person,

forgets he tried to escape

the battering crunch of her insults,

as his mind grew pale,

paper thin.

I feel the anger in my teeth now,

composure stitched to my lip,

trying to break free.

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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.

Damned statistics

I don’t reblog a lot, but I think this is an important and educational post and felt I had to share.

RD Ramblings

People who know me well will be aware that I’m not a fan of numbers. In fact, I detest the darn things. Maths was my worst subject at school (aside from the much-dreaded sport); I never learnt my times tables; and although I can easily rattle off huge chunks of ‘Hamlet’, I struggle to remember my own ‘phone number. And don’t even get me started on a task in my previous job which involved working out standard deviations from cohort means in order to calculate student prizes.

However, I acknowledge that numbers are important – especially in these days of rising Covid cases at a time when we’re all getting dragged back to the office by our hair, kicking and screaming (did I mention that I’m not looking forward to going back?). In fact, it amazes me that although the daily infection, hospitalisation, and death figures in the UK…

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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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