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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

Loss

All I Have Right Now is Poetry

It has been a turbulent year. I haven’t done a lot of writing and almost no submitting, but I did have a few poems come out this month. Right now, it is all I have to share.

I already shared the poem in Orange Blossom Review, but if you would like to have another peek, you can do so here. My poem “Wax” appeared in Fresh Air Poetry, a new publication from the former editor of Amaryllis, Stephen Daniels. I also have a poem in this months Burning House Press that you can read here.

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I Am Not Blind When I Close My Eyes

I have been writing about a storm, hiding behind the clamor of the rain. I have been watching my feelings twist into the drain, willing away their texture and weight. It is futile; this hiding, this twisting, this willing away. I am sinking but standing still, static but being torn to pieces. I can no longer see who I was and I can’t remember who I wanted to become. I used to feel the fleeting joy of sparks on my fingertips. Now, it is just a dullness, an ache. All I want to do is run away. The gloom swallows my steps every time I try and escape.

I haven’t wanted to write about my father; maybe because I was afraid that if I wrote about him, I would lose all hope of escape from the grief. But, I know better. There was never any hope of escape. My father has dementia. Every day, I grieve him, a slow grief. He fades the way my vision fades, pieces of his memory growing dark, trapped in shadow. I am consumed by sadness and a constant feeling that I am failing him, because of my limitations, my blindness and my inability to put my emotions aside, to give even the perception that I am not coming unglued.

I wanted to at least start to share this story today, but even tearing away a small piece feels like a betrayal. I am exhausted and haven’t felt the earth of my life in so long. My voice is numb and I feel emptied out, blank. There is no path. No direction. No light. There is only the weight that comes with watching him forget the shape of his life, knowing that he has forgotten my name, and will one day forget who I am.

For 3 years, I have been watching him become someone else. In many ways, I am closer to him now than I was when his brain was crisp and unclouded. I can finally be what he needs. I finally have value. But, I am losing myself. Joe and I are the only ones who are here, living close by and helping. We have been so alone in this and I am afraid of the tole it is taking on Joe. I don’t talk or think about much else; it is as if I have stopped breathing, as if I am disappearing not only from my father’s memory, but from the grasp of my own life. I have abandoned my writing, but I have come to peace with that. I am doing what I have to do, for now.

I am unsteady, unreliable, untethered. But maybe, for just a moment, I can believe that when I close my eyes, I am not blind.

Storm

I am in the grip of a storm.  I don’t do well in a storm.  I can barely breathe, barely blink.  I am drowning.  I have forgotten that I am supposed to keep my eye on the surface, stretch to the moon, take hold of happiness no matter how fleeting.  I have lost the words, lost the feeling in my fingers and in my bones.  I am a stranger.  I am about to turn 50 and I am a stranger in a body I loathe and abuse.  I don’t recognize the shape of my mouth or this new sadness that slashes it. I have been waiting a lifetime for it all to get easier, just a bit easier. It just gets harder, creaks, shrieks, breaks.  I am not who I was supposed to be.  I can’t remember where I was lost or when I gave up on being found.  I try to smudge out my reflection, fracture it, run from it, pretend that I am not this frail flesh, this breaking heart, this ugliness.  I try to write poems, but they are empty, made of air, burn up before they can draw breath.

Slipping Beneath Time – Recorded Version

My friend Basilike, a brilliantly unique, beautiful and evocative writer, who authors the blog Silent Hour, suggested that I record my most recent Visual Verse contribution, “Slipping Beneath Time”, as part of my recorded poetry series.  I posted the recording on my YouTube page this morning.  If you would like to subscribe to my page, you can do so here.  If you would like to read the poem with the VV image that inspired it, you can do so here.

 

Slipping Beneath Time

If I slip beneath time, race back to seventeen,
will you stay with me,
spreading poppies on the wind with your laugh,
singing me awake on birthday mornings?
If I smudge out history, pluck the weeds
that death scattered between twenty and thirty,
will you save me,
pull me from the bottom of a bottle,
shatter it against the sky?
If I step into the sun, turn willingly toward fifty,
will you see me,
youth pouring over my fingertips
as the light is wiped from my eyes?

©Susan Richardson 2019

 

In on Time

It seems that I got my Visual Verse submission in on time this month.  There are some amazing contributions and I recommend you read the whole issue as it is so far, and continue with it as the month comes to a close.  If you would like to read my contribution you can so so here.  Ironically (or perhaps intentionally?), it is number 50…..I will be 50 in just a few weeks…..

The Weight of Tears

My world is crumbling right now.  I will write about it one day…..not today.  I am not very present.  I am sorry.  For now, I will share my March Visual Verse poem, which I didn’t submit to them on time, apparently, but felt like sharing here.

 

The Weight of Tears

You are a slice of bone
Piercing the moon
A light behind my eye
That reminds me I was loved
And makes me ache
I dreamt you were the night sky
Watching over me
Sprinkling stardust on my cheeks
To soften the weight of my tears
When they lowered you into the ground
I knew the earth could never keep you
Buried in darkness
Tethered to its roots
You were always meant to fly
To dance in the arms of the stars

A Small Detour

If you are familiar with my blog, then you know I have been posting a new series of recorded poems, starting with my publications in 2015, which came after a lengthy hiatus.  I am going to continue with the older poems, but at the suggestion of my friend Kim, I have recorded my most recent Visual Verse contribution.  And, if you haven’t had the pleasure of reading Kim’s poetry and her blog, I Tripped Over a Stone, you absolutely must!  Kim is a fiercely loving, kind and talented woman, who I am grateful to know and to learn from.

If you would like to read the original publication of this poem, with the image that inspired it, you can do so here.

How to Say Goodbye

 Promise you won’t forget me,
even when my name
has faded from your tongue.
Remember how I looked
into your eyes,
a season of storms
passed from a mother to a child,
how the strength of an ocean
helped you feel
less afraid.
I would have reached through flames,
cast thunder into a sky
filled with the stench of despair,
to save you
from the horrors of violence and greed.
Promise you won’t forget me,
even when my voice
has turned into a whisper of petals,
caught by a spark that changed
the shape of time.
Feel the imprint of my fingertips
wiping the tears from your cheeks,
and remember,
I will always love you.

This Isn’t About Self Doubt

I feel hollow, as if the pulp of my heart has been scooped out and its shell stripped of texture and color.  I have lost poetry, misplaced language. Or perhaps I have siphoned out everything I had to give and now it is time to recognize that the glimmers of my words have been luck, and that my luck has run out. Continue reading “This Isn’t About Self Doubt”

Once a Year

Tomorrow is my annual appointment with the retinal specialist.  I used to suffer from at least a week of anxiety and fear leading up to the appointment, but I have been through it so many times, I now start getting anxious about it just the day before.  I suppose I am lucky that I only have to go once a year, given that there is no treatment for my disease(that isn’t so lucky), but the day is always long, painful and exhausting. Continue reading “Once a Year”

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