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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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depression

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…..

Remembering How To Breathe

It’s been a rough week. Lots of tears. Lots of sun falling out of my mouth, leaving shadows to choke me and change the taste of the landscape. When I feel this way, all I want is to disappear, to blend into the chipped paint, hide beneath the floor boards. I cry while looking at cooking shows. I cry sitting at the computer, washing dishes, riding in the car watching the filthy city shrink under the waves of heat that oppress and burn. I am coming unglued. I have forgotten how to breathe.

In getting ready to move, I sink into the lives of people I have loved, people who have died. I am tearing away scar tissue, leaving wounds vulnerable to the teeth of time. I am awash in memories that leave me desperate for youth, for the feeling of my mother’s arms around me, for the delight in my brother’s boyish laughter, for the scratch of my father’s beard against my cheek. The weight of missing people presses against my eyes and taints the color of the sky. I am coming unglued. I have forgotten how to breathe.

I am tying up the loose ends of my broken body, retrieving my white canes from their hiding places, spending day after day in dental torture chairs, wishing I hadn’t allowed myself to get so fat. My heart has been buried so deep beneath the flesh, I no longer recognize its rhythm against my ribs. The mirror is my punisher, the fist that reminds me I have failed again, that I will never be good enough. I am coming unglued. I have forgotten how to breathe.

My book got a mediocre review. It crushed me. It pissed me off. It left me wanting to quit writing, to burn through the lines on the page, scatter hope into the dirt. I would have preferred a scathing review to the placid temperature of the three star review. Intellectually I get that my writing isn’t for everyone, but between love and hate the color drains away. It is easy to forget that it is only my heart on the page, my stories of coming unglued, of forgetting how to breathe.

But, life is a coin. Tarnished in some places, sparkling in others. It is sadness and joy passed through fingers, dropped and forgotten, discovered and cherished, held tightly against your palm. Life is the shadow and the light, the dream come true and the longing that is shattered. I am not unscathed. I don’t want to be. I sit in the center of what hurts, because I know that is where joy also lives. Sometimes I need to come unglued, so I can remember how to breathe.

The Outside of Everywhere

I linger on the outside of everywhere. I am a skulker, a bone shucker, a fraud.  I slip behind curtains, under floorboards, into panes of glass that mute my words.  I am awkward and stumble more than I stand tall.  I am late to the gathering, last to get the joke, the one in the corner feeling confused.  I am hollow, looking for substance, failing.  I am fleeting, a pale representation, a liar.  I am a nail biter torn to the quick.  I am clamor and catastrophe in the flick of a switch.  You are my captor, my captivator, my annihilator.  You are the steely grip of an unblinking gaze.  You are my habit, my protector, you pull the strings.  I will always surrender.  You will always win.

How Do I Get Out Of Here

I didn’t start this month thinking I would be writing about mental illness, but I have been so encouraged by the bravery of other writers sharing their experiences, I feel the need to share my own, with the hope that it may help someone, somehow.  My experiences are not unique, but that is the point; there are so many of us out there who suffer from depression and anxiety, and we should not feel ashamed.
Continue reading “How Do I Get Out Of Here”

Let’s Talk About the D Word

I recently read two blog posts about depression, from Wil Wheaton and HLFHM.  Both are brave and honest accounts of what it is like to live with depression, and both are written openly and without shame, in the hope to help others understand and feel that depression is nothing to be ashamed of.  These posts made me want to make an attempt at throwing my dilapidated hat into the downward spiral. Hopefully, the more of us who talk and write openly about living with mental illness, the more it will come out from underneath its blanket of shame.
Continue reading “Let’s Talk About the D Word”

Poem in Literary Juice

I am super excited to have one of my poems in the December issue of Literary Juice.  Thank you editor, Sara Rajan, for including me in your amazing magazine.

In a Thousand Directions

I need to begin this blog post by saying that I am not so sure I should actually publish it, but I probably will; more often than not, I do the things I shouldn’t do…….

I am in a dark place.  That phrase always strikes me as so fucking ironic, given the whole blind thing, but it is appropriate on so many levels.  So, yes, I am in a dark place; not the place I had imagined myself after completing my orientation and mobility lessons, but that isn’t a surprise.  I am an expert at building up the outcome of things and calling it being positive, when really I am just setting myself up to fail.

I imagined that I would emerge from O&M feeling a renewed sense of independence and freedom, but instead I feel like a huge weight has been tied around my neck.  I thought I would feel invigorated to go outside and be a part of the world, but I feel more isolated than ever.  I know that I am depressed, and that isn’t a new feeling for me, but because I had so vigorously anticipated  the opposite, I am pretty far down in the pit.

I have been spending countless hours trying to convince myself that I don’t need Zelda, so I can go back to my life before her; when I went hiking and shopping, and got to put some dedicated effort into pretending that my vision is just fine.  But, maybe it is just fine and I can keep getting by like I was before….until something super cataclysmic happens and I am thrust back into reality.  Or maybe that is the most stupid plan ever.

The point is, I don’t know.  I just don’t fucking know.  Is my vision really that bad?  Do I need Zelda?  Was the visual field correct?  I feel so crazy walking down the street with Z, seeing what’s in front of me.  Sure, if someone were to suddenly turn a corner or come around the side of me from behind, I wouldn’t have a clue they were there, but how often does that really happen?  Do I even know how often that happens?  Probably not because I can’t fucking see.  But, I can see.  I see you walking toward me.  I see that you have brown hair and a red shirt.  I see you from a block away.  But, I don’t see you from even a foot away if you are next to me.

I can’t get out of the mind fuck, and I had to face the fact today that I have been acting like a real asshole by allowing myself to continue to be completely consumed by all the emotions that have come up as a result of bringing Z into my life.  I haven’t been that nice to friends and I haven’t been a support to my husband in all the ways I would like to be.  I cut myself off from so much that made me feel good, all so I could focus entirely on something that shines a light on everything I feel I am not supposed to be; flawed and broken and fat and lazy and blind. Focusing on all of that made me mean, which is something that is really not ok.  Flawed, broken, fat, lazy and blind; well, those things just make me human.

If I sound like a total nutter….well, welcome to my brain.

I know that there are some people who may find the way I express myself to be detrimental, to me and to the blind community, but, come to think of it, they probably aren’t reading my blog.  Anyway, I just want to say that I am not a representative of the blind community, nor do I speak for visually impaired people.  All of this mass of crazy shit that I write about is just my journey and I have to do it as honestly as I can. My honesty is messy and uncomfortable and I feel so ashamed of it and of myself most of the time, but still I am compelled to write it out and scrape some of the bleakness off my  skin.

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