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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

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.

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”

It Rained That Day

It is raining in Los Angeles.  31 years ago today, my Mom was buried.  It rained that day as well.

Some years I feel the weight of these days on the anniversary of her death, some years I feel it more keenly on the anniversary of her burial.  The night she died, everything was so quiet and I felt numb, lost.  It was three days later, at the cemetery, that the noise of her absence filled the sky.  I stared at her casket thinking how wrong it was that the wood was polished, shiny.  Rain began to fall as they lowered her body into the ground.  Sobs escaped my throat.  My Dad had to hold me upright so I wouldn’t fall out of the chair.  It was the day the breaking began to consume me.

I wrote this poem on the 25th anniversary of her burial.

Twenty-Five

Twenty- five years ago, I watched strangers
lower my mother’s body into the ground.
It was raining that day.
The soil swallowed up her oak and pink satin casket.
Heavy.  Cold.
Not a place for a woman whose laugh lit up rooms,
whose touch soothed even the deepest aches.
My breath and heart plummeted into the hollow earth and
I broke into pieces that scattered in the rain.
For twenty- five years I have been collecting them.

*first published in Stepping Stones Magazine

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”

The Consequences of Blindness

I read a post this morning from Sightless Musings, that hit me at my core. Please read it.

I was going to write about writing today, about feeling completely inarticulate, but after reading the above mentioned post, I changed course a bit. I am still feeling like a complete bumbler in regard to my writing, but I press on and tell this story (if you can call it that) anyway.  Continue reading “The Consequences of Blindness”

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”

The Return of Darkness

I have been away,  under the skin of darkness.  I intended to bring along pen and paper, do a bit of blood-letting, record my thoughts; instead, I brought a bottle, numbed out and dreamed of becoming  someone else.  I curled up against the edges of my eyes and saw things I knew were lies, but I didn’t care.  I forgot about plotting my escape and let the stillness eat me up.
Continue reading “The Return of Darkness”

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