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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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Family

Stress Fracture

I am thrilled see my poem,” Stress Fracture“, published today in Literati Magazine. My huge thanks to publisher Renée Sigel!!!

“Things My Mother Left Behind” Available for Pre-Order

I am sitting in my very quiet writing space, typing this in a state of simultaneous disbelief and total joy. I am thrilled beyond the sky to announce that my book, “Things My Mother Left Behind”, is available for pre-order, on Amazon. This is a life long dream come true for me, and I will be forever grateful to River Dixon; an amazing writer, publisher extraordinaire and founder of the incredible Potter’s Grove Press.


To pre-order the ebook version of “Things My Mother Left Behind” you can go here. To visit my Amazon Authors Page, you can go here. To explore the beautiful and diverse catalog from Potter’s Grove Press, you can go here.

I am so grateful for all of the love and support I have received from this incredible community over the years; it has given me a sense of courage I never thought I would feel, and helped a life long dream become reality.

Blind in the Time of the Virus

It seems like ages since I have written about blindness.  It feels so small, so insignificant compared to what the world is facing, but regardless of its weight in a moment or hour or day, blindness is always with me.  Blindness won’t be ignored or cajoled away.  It makes everything I do more challenging, and even in this time of global crisis, blindness refuses to sit quietly. 

There was an incident recently, on the stairs, that I told Joe is a perfect physical manifestation of how my mind works.  I hurt my knee and was walking up the stairs, very slowly, after helping walk the dogs for the first time in a while. I am trying to use my knee to get it back into working shape.  I was close to the top of the stairs when it started to give out, so I grabbed the railing for support.  My arm is also injured, so when I grabbed the railing, the pain shot through my shoulder and down to my wrist so intensely, I started crying and couldn’t hold on.  I was wearing a mask, which is an impediment to my already impaired vision, and breathing heavy with tears, so my sun glasses fogged up and I couldn’t see anything, and then my aging body decided that it was the perfect time for a hot flash.  And oh yeah, there is this virus thing that is killing people all over the planet, so I was trying desperately not to touch anything and get to the hand sanitizer so the virus couldn’t get in the house.  If this is the physical manifestation of how my mind works, no wonder I am nuts.  The truth is that it was painful and terrifying and I felt so incredibly helpless, but it also made me reflect on how lucky I am. 

It has been a challenging time, but regardless of whatever challenges I face, I know that I am lucky.  I am lucky to have a home to shelter in and an incredible husband to shelter with. I am lucky to be cared for and nursed through the injuries that come from being partially sighted, (and sometimes just clumsy and old). I am lucky to have neighbors who rally together during times of crisis.  I am lucky to live in California where our Governor and mayors are doing the work to protect us and stop the spread of the virus.  I am lucky to be able to read and write and feel the support of people around the world. I am lucky that people take the time to read what I write, that I have an actual book coming out into the world.   I am lucky to have family and friends and so much love in my life. So, yes, I am blind and broken, I am the chaos on the stairs, but I am also incredibly fortunate and grateful.   

Untethered

I was in the car with my husband yesterday, Thomson Twins jangling in the background, when I started to think of what it means to be untethered.  I am parentless, floating without the anchors that rooted my bones to the earth, my blood to the sky. My identity was already fractured, unstable at best, but now I become the definition of loss each time I open my eyes to inhale the sun, each time I close them again to swallow the moon.  I have been emptied out so many times, turning to the memory of voices that fade with the passing of years.  I became old when I should have been steeped in youth, threw my eyes into the grave, forgot how to look to the sky for solace, for discovery.  I am recognized by the shape of my diseases, ailments that strangle my determination, but I don’t recognize my own face. I am the word on the page that erases itself but never stops searching for sound. I am a war, a need to be invisible and seen, to be silence and noise. Is this what it means to be untethered?

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.

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”

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