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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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Blindness

All I Have Right Now is Poetry

It has been a turbulent year. I haven’t done a lot of writing and almost no submitting, but I did have a few poems come out this month. Right now, it is all I have to share.

I already shared the poem in Orange Blossom Review, but if you would like to have another peek, you can do so here. My poem “Wax” appeared in Fresh Air Poetry, a new publication from the former editor of Amaryllis, Stephen Daniels. I also have a poem in this months Burning House Press that you can read here.

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From the Quiet comes Poetry

Everything is so quiet and so very loud. Each step I take is labored, heavy and uncertain. I haven’t written much at all this year, or submitted or had much published, but today I opened my email to a lovely surprise. Issue 3 of Orange Blossom Review came out yesterday, and I am honored to have one of my poems in its virtual pages, amongst the work of so many talented writers. If you want to take a peek at the issue, you can so here.

Little House (For Kat)

I am continuing my recorded poetry series with another poem that was originally published in Wildflower Muse.  Heather put out a submission call for work related to the theme of music, and “Little House (for Kat)” was what came from the inspiration of that theme.  Music has always been a big part of my life.  I grew up in  2 musical households.  My parents were both musicians and my brother, sister and I all inherited that love for music.  Music was also a big part of the longest and closest friendship of my life.  If you would like to read the published version of the poem, you can do so here.  You can also subscribe to my YouTube channel, if you’d like to hear more poetry.

 

 Little House
(For Kat)

You were 19 and I was 20,
living in a one bedroom apartment,
learning how to be inventive with top ramen.
We drank jugs of cheap wine,
chain smoked a grown up brand of cigarettes
and watched Little House on the Prairie re-runs.
My favorite were the seasons of Mary’s blindness.
We agreed it would be better to be blind than deaf,
long before I knew I was treading on Mary’s heels.
It was impossible to imagine living without the
chaotic rhythms and lilting tones of sorrow
that shaped our friendship.
You worked long days in a record store,
brought home shopping bags filled with
bootlegs and coveted early copies of new releases.
We crept around Los Angeles in your old red car,
memorizing the lyrics to Sinead’s new songs,
thinking up cool band names and
talking about affairs with older men.
You introduced me to Concrete Blonde,
got me hooked on Mary’s Danish and
spoon fed me Thelonious Monster.
You were with me in my first mosh pit,
where I was lifted out over the crowd
and lost my china doll shoes.
After seeing bands in the back rooms of
neighborhood guitar stores,
we spent hours in all night coffee shops.
You liked your coffee sweet, mine was always black.
I wrote bad song lyrics on napkins and
you created fortresses from salt shakers and creamer packets.
We made plans for the band we’d start some day.
Our life was marked by a sound track
of frenzy and shadows, a language
that brought us together,
but the blues crept up my back and
tore me away from our bastion
of skyways and melancholy.
Almost 30 years later, the record shop is gone
and you have moved across the ocean,
but the songs that conjure up our time together
will always send me reeling back to nightclub jitters.

 

 

Lethargy

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.

Lethargy

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.

 

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”

An Unpopular View

I was going to work on my newest venture of writing fiction (thanks to my wonderful friend and mentor, Bryan) and send out some poetry submissions this morning, but then I entered the WP world and read a few different posts, from others in the Blind/VI community, about the  #Birdbox challenge, and I felt compelled to respond with a post of my own. Continue reading “An Unpopular View”

Frail

I was determined to become more disciplined, more succinct in keeping my blog alive.  I was going to post twice a week. I have a number of blog posts in the making. But I forgot about the ways that life creeps up and grabs me by the throat, dashing whatever lofty plans I may have conjured up.  I have imagined myself as so many things, believed myself to be so much more than I am.  I have accepted illusion over reality, climbed into the sounds of myself breaking and shattering, as if these were acts of bravery.  I convinced myself it was strength, believed that I was strong, but my reflection shows a woman who is frail and swallowed up by shadows.  Time and again I am a disappointment to myself.
Continue reading “Frail”

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”

Swallowing Voices

Lately, I am a blade on the wind.  Unsteady.  Damaging. I am trapped in the clutches of an elixir that lies.  I swallow the murmurs of depression with bottles of wine and bags of crisps, but can’t ever fully escape the noise.   It sits heavy in my belly and pushes out through my skin.  I wear it in my poems about fat girls and self loathing. I hold it against the roof of my mouth and in my clenched jaw, trying not to wake up.  Trying not to see. Continue reading “Swallowing Voices”

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