Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.


March 2019

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.

Tiny Voice

I am so grateful for all of the support and positive feedback I have received since venturing into the realm of recorded poetry.  It may seem ironic that I live in a city steeped in the desire to perform, and yet I have never done a single live reading or participated in an open mic, but I am a quintessential homebody with no desire to feel the light on my face.  Recording my poetry felt like a good middle ground.  If you are interested, you can subscribe to my YouTube channel here.

This next recorded poem is the last from Stepping Stones Magazine, published in 2015.

Tiny Voice

My sister speaks so clearly in her sleep.
I am as thin as the wall and you can’t catch me.
She laughs maniacally,
slumbering on my left side,
Mom on my right.
The three of us, bundled up in her king sized bed
to comfort each other from fears of the night stalker.
Was it he who you challenged in your dream?

Years earlier in the haunted canyon house,
Mom a world away and me terrified
of darkened corners that nightlights can’t reach,
I would creep into your room
and whisper in my tiny voice,
Can I sleep with you?
You never said no,
just pulled back the covers
to invite me into the safety only an
older sister’s arms can give.


Blind (Poem)

With poetry and music and images, Carrie Ann gets under the skin of blindness in ways that my mere words never could. I experienced this piece yesterday through a river of tears. Incredibly powerful!

A writer & her adolescent muse

I wrote this poem (which I turned into a video-there’s just something about surrounding your written words with images and music that bring them to life) from a perspective of one who’s slowly losing her vision.

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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.

Lies of the Light

I am so tired.  Tired of the weight in my heart that makes every breath an agony.  Tired of the wicked machinations of my mind.  I am tired of feeling numb, of trudging through the muck of writing that feels soulless and without pulse.  I feel as if I am supposed to love to write, but I am not sure I do. I feel very disconnected from it, from the catharsis of it.  The result seems to be that everything I write has no essence, no feeling. I am tired of feelings.

Some may call this place darkness.  I used to call it darkness, but that isn’t the truth.  In darkness I feel safe and alive.  It is in the light, the oppressive and bright light, that I feel unbearably heavy, exposed, frail.  The light makes me want to hide, to fall to pieces and turn to dust.  It weighs on me and mocks me, a foot pressed like a noose against my throat.  It blinds me.  It lies.

I crawl on my knees through a maze that always leads me back to the door of a mind that has been severed.  I am a rat in a trap.  I am not special.  I am not different.  Life doles out cruel strokes to everything that breathes.

I am so tired.  The words that come next have been trapped beneath the light.


In continuing my recorded poetry series,  I am sharing the second of three poems published in Stepping Stones Magazine in 2015.

If you are interested, you can subscribe to my YouTube page here.


I am silenced by grief.
By shadows and blindness and the infernal heat wave
that coats my city like an itchy, heavy blanket.
I am coming unhinged.
I try to climb up through my lethargy,
snap my pieces back into place,
but the gravity of your absence pushes me
down on the floor, where blindness doesn’t matter
and the silence is intoxicating.
If I am perfectly still, the chaos won’t touch me
and my ghosts can’t find me.
If I rise to the occasion of my creative pulse,
I may burn up in the greedy spark of my fear.
Darkness chases me through the passages of my life,
whispering that I am useless and defective.
The sacrifice is my voice.
It is a sacrifice I am not yet willing to make.


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