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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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Blindness

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.

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.

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.

Sometimes Happiness Holds it’s Breath

I am happy, but unsettled. Monumental life changes during a pandemic are, understandably, wrought with complexities; the thought of holding onto moments of happiness feels somehow criminal, undeserved. Covid has left the world in stasis, and although I am living in a new country, I feel I have only seen glimpses of the town I now call home. Beautiful glimpses, but still…. The virus has stitched a shell over the sun, spread a new brand of silence across the sky. Strangers long for each other in unexplored and unexpected ways. I live my contentment in whispers now, hold joy close to my chest, like a secret. Who am I to have these things, when so much has been lost? I know I am lucky.

Do not confuse feeling unsettled with doubt. I have no doubts about the decision to shed a life that was strangled by heat and the kind of violence only a city can offer up as daily garnish. I have no doubts about trading in that life for one that is awash in green and love and more possibility than I could have imagined. I have no doubts about abandoning the noise and taking the quiet gently into my hands. I am unsettled, but I know I have made the right choice.

For now, I live as if in a dream, on the precipice of daring to imagine that one day I will awaken to the sounds of a new world, one no longer trapped under the thumb of fear . I secretly yearn for the backdrop to reveal itself, to show me who I can become in this new place, or what parts of myself I can rediscover. The mist may have descended for a time, but I finally feel certain that it will clear. This, I now realise, is the nature of hope.

And so, perhaps happiness will hold its breath for just a while longer, wait patiently for me to peel back the layers and look clearly into the eyes of this new life I have forged for myself. I am content in this new longing, in this new waiting. I have already waited lifetimes.

Zelda, Persephone and Maud

When I started writing my blog, it was going to be a story solely about blindness, but as the years have progressed, I have discovered that the story of my blindness is the part that weaves itself into the whole, but isn’t the only thread that gives meaning. With this realization my blog has become about a life with blindness, rather than a life of blindness. Blindness makes my life more challenging, but it isn’t all of me; it often decides my fate, but it doesn’t define me.  It leads me to places I never imagined and to the rediscovery of places I had thought forever lost.  Blindness has brought friendships and community into my life in such fulfilling and sustaining ways, and it has allowed me to work through things I believed insurmountable.  But there is one battle I just can’t seem to win, the battle of Zelda. 

If you are acquainted with my blog, then you may remember Zelda, the thorn in my eye who I tried to see as a savior, but let’s just say it was a struggle to get clarity, and continues to be a struggle.  For those of you who don’t know or remember her, Zelda is my white cane.  I wrote a whole series of posts about my early days with Zelda during my O&M lessons, if you are interested in reading a bit about her background.  

So, forward almost three years, and the truth is that Zelda has rarely seen the light of day.  It’s sad really, given that she was supposed to bring some light into my hands and help guide my way over the precarious streets in this city of questionable angels, but I just can’t make peace with her, no matter how many times I trip or fall, no matter how clear it is that I need her.  

I stashed her at the bottom of a bag, which I put in another bag, which I put at the back of a high shelf in my closet,  in an attempt to forget about her, but the bruises seem to fade much more slowly as I get older, sitting on my skin as a reminder that I am not safe. My husband will periodically mention Zelda, ask where she is and if I might try her out again.  I know he worries about me.  I tell him I don’t want to be the blind wife.  I don’t want him to feel ashamed or embarrassed.  I tell him I wish I could be less broken, feel more like a partner and less like a burden.  

I do recognize that I need Zelda, so I started to think about what it is that bothers me about her.  The reasons are many and complicated, but one tangible thing is that I find her to be way too tall.  So, I decided to try out some shorter canes.  I am just over five feet tall, and although my O&M teacher was a fan of a taller cane, I never felt comfortable with Zelda’s height.  So, enter into the picture, Persephone of medium height, and Maud who is short and round, just like me.  I don’t know if the shorter canes will help me feel more comfortable, but I do know that I have to try something.  The thing is, the virus took over just when they arrived, and now we are all at home together for the foreseeable future. When the stay at home order is lifted, I just might go outside and give them a whirl.  

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