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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

Family

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.

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Stubborn Child

Stubborn Child is what would have been the third in my next series of poems, from a journal called Wildflower Muse. I am putting it out now, because  I have decided to enter a contest with some of my recorded poems, and the first two in this series may be a part of the piece I enter.  Today will also be the last day I post or read any posts until after the contest.  I have my work cut out for me in preparing for it, as I am delving into uncharted waters.

Heather Lenz, the poetry editor for Stepping Stones Magazine, who became a mentor and a friend, went on to create Wildflower Muse.  She published 6 of my poems and 2 non fiction pieces.  I will always be incredibly grateful to her. I will writer more about Heather and her journal in a later post.

If you wold like to subscribe to my YouTube channel, you can do so here.

 

Stubborn Child

When I was four, I wouldn’t let
my mother brush my hair.
I hated the pull and tug,
roots tearing from scalp,
all to satisfy a mother’s idea of what
perfect children should look like.
Long blonde hair and soldier teeth.
Every day she would take out the brush,
brandishing it like a bayonet,
but fear tactics didn’t work on me.
Feet planted and defiant hands on hips,
I challenged her, ready for battle.
I shrieked and raced down hallways,
hiding in dark closets until
she tired of my antics and gave up.
Let it fall out for all I care.
Waif.  Urchin.  Stubborn child.
Months passed without the threat of a single bristle.
The pale strands grew into an unruly dreadlock,
a tumble weed spun from white gold and insolence.
I wore my tangled crown with pride
and a satisfied grin of triumph.
One morning, mother came out with scissors
and cut the dreadlock off.

I Become the Noise

In a split second, the weight of my mind can become unbearable.  The feeling of my skin disgusts me.  I remember everything that makes me ugly, all the anger and how I have hurt people.  I start thinking about everything I have lost.  I weave myself into the fabric of lies I believe in, as if they are prophecy.  I become the nightmare. I become the noise. Continue reading “I Become the Noise”

Thirty One Years

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Thirty one years ago today, after a long battle with a gene mutation that gave her multiple kinds of cancer, my Mom died. She was 52 years old.  This photograph was taken on her 50th birthday.  This year, I will turn 50.  It has been a lifetime without her and I miss her every minute of every day. Continue reading “Thirty One Years”

Increments of Five

Why is it that we give monument to increments of five? Why do five and ten hold more weight than three or seven?  The fifth anniversary of my brother’s death just passed and five years feels impossible.  I have this disbelief that he is gone, and at the same time, feel the unbearable weight of his absence.  How can he be dead?  How can five years have gone by? How is it that life just continues, as if time forgot the sound of his laughter and his suffering?   Continue reading “Increments of Five”

Dodging the Rain

I am super excited and honored to have 3 of my poems in Dodging the Rain today.    My huge thanks go out to poetry editor Neil Slevin!

I don’t usually write much about my poems after they are published; I tend to allow them to be whatever they are meant to become for anyone who reads them.  But, the three poems in Dodging the Rain are all very close to my heart, about loneliness, and essentially love.  The love for a sibling, for a partner, and for a friend.  They are about stillness and about the journey.  But still, I hope that if you choose to read them, they will also be whatever you need them to be.

If you would like to read the poems, you can do so here.

August Visual Verse Contribution

I am a big fan of the Visual Verse Challenge, the time limit, the surprise, the inspiration.  But now, it is even more fun because my friends Walt and Wulf are also contributing.  I love seeing how differently we all interpret the same image, how it takes us to such different places. It is art in the palm of your hand.

If you would like to read my contribution to this month’s challenge, “Things My Mother Left Behind”, you can do so here.

And if anyone else is participating, please share.

Memorizing the Words

My contribution to the July Visual Verse Challenge is up.

This month’s image was one that sent me reeling into a place of memory and nostalgia.  If you want, you can check out my poem, “Memorizing the Words”, and the entire first batch of amazing poems for the month.

 

Burning House

I am thrilled to have 3 of my poems in Burning House Press today!!!!! My huge thanks to June editor, James Pate! If you want, you can read them here.

 

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