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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.

Month

May 2019

Flush – Recorded Poetry Series

My energy is pretty zapped right now, my thoughts consumed with what is happening to my father. I feel sad and emotional. I feel so grateful for all of the kindness I receive here, and for the amazing writing that I get to lose myself in. But, right now, I am not reading much and certainly not writing much. I feel like a stone, slowly sinking as everything goes dark. I will get through this. I will meet the challenges that face me.

In the meantime, I have the last two poems from The Furious Gazelle recorded and will share those. In advance, I am sorry to post and run.

Flush

Lurking behind the thin
stained metal of a bathroom stall,
brazen and breathing gravel,
she waits for an audience.
I open the door to a greeting
that crackles with delight,
but the smell of her misery 
crowds the room.
She steps elegantly from
behind the tin curtain and
bows to her reflection in the mirror.
Her hair is tangled and covered with despair.
She is searching for a song
that died with the starlets of Ragtime.
Lips that drip fire grasp at words
falling through blisters and cracks.
Her nose seeps with determination.
She smudges blood across her teeth
with a tremoring hand, burps,
and flushes herself down the toilet.

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Had to Share

So I was perusing the most current issue of Visual Verse this morning and came across this brilliant piece written by my friend Basilike Papa, the author of the blog Silent Hour. Her writing always inspires me. She weaves words in a way that is so uniquely and beautifully hers; it is like magic.

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.

Gold Lame’

This will be my last post before I turn 50, and honestly, I may have the kind of hangover that takes a few days to recover from, so this may be my last post for a week or so.  I am still undecided what the celebrations will look like.  That said….

I am continuing my recorded poetry series today with a poem that was originally published in The Furious Gazelle.  The Furious Gazelle is a super cool and eclectic journal, with editors whose artistic sensibilities have range, depth and flare.  “Gold Lame'” is the first of three poems I was lucky to have published with them, along with a couple of essays.

My range as a writer may not be very expansive; I tend to write about just a few things.  But, one of those things is my city, and in my city lives a wealth of characters to write about.  All three of the poems in The Furious Gazelle were inspired by Hollywood…the real Hollywood.

 

Gold Lame’

Toothless ladies reign
over my Hollywood neighborhood,
holding court on street corners.
Gold lame’ and a slash of red lips,
she flicks you away like filth off skin
and barricades you from the
wreckage of her fortress.
She sits on a throne of fading glamour
and keeps watch over the tumble of
ravaged relics that house her memories.
She came to the city to be gild
and slathered in star light,
but settled for a crown of tin with
rubies made of glass.

 

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.

From The Hungry Chimera

It has been interesting, and a bit strange, resurrecting my older poems for the Recorded Poetry Series I started on YouTube.  Although I hope I have grown as a writer and will continue to grow and evolve, the earlier poems, I think, create a foundation that I am grateful for.  It can be enlightening to revisit beginnings, hold them gently and thoughtfully in your hand, rather than tear them apart.

This poem, published in the second issue of The Hungry Chimera, is called, “Paper Bag Dance”.  You can read it and the entire second issue here.  This is an exquisitely beautiful journal that I am proud to have been a part of.

Paper Bag Dance

City life enshrouds the girl in a paper bag.
She tucks herself in tightly
and shrinks from the onslaught of strangers
who walk briskly and have no eyes.
They rush through the grind,
living without the hesitation
that is born of curiosity.
She stumbles past shops,
staring into frosted panes and
disappears into her own reflection.
Waltzing behind the glass with a
stranger whose scent she longs to inhale,
she is liquid and light on her feet.
She reaches out to caress the strangers gown,
but her fingers press hard against
the brittle paper bag.

 

 

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