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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

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.

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.

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.

My Husband is a Genius

I am super excited!  I have a WEBSITE, an actual website with pictures and everything!  I feel like a real grown up writer, and the best part of it is that my husband, Joe, imagined, designed and created it.  He is a genius who has made me look much more impressive than I could ever be.

Joe has made websites for writers, chefs, doctors and safety professionals. He has true range and talent.  He will be officially opening his business this summer, so if you need an amazing website, or know anyone who does, he is your guy!!!!

In on Time

It seems that I got my Visual Verse submission in on time this month.  There are some amazing contributions and I recommend you read the whole issue as it is so far, and continue with it as the month comes to a close.  If you would like to read my contribution you can so so here.  Ironically (or perhaps intentionally?), it is number 50…..I will be 50 in just a few weeks…..

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.

 

 

Rearranging the Furniture

Joe and I have lived in our apartment together for almost 10 years (he lived here 4 years before I moved in) and periodically, we rearrange the furniture.  We love it.  It makes the apartment feel brand new.  It may seem like a stretch, but when I was thinking about my writing the other day, and how much I have been floundering, I drew a parallel in my mind to rearranging the furniture.  When Joe and I start feeling a bit stuck in our apartment, we move things around and clean inside corners that have been long ignored, and we both feel refreshed.  Our most recent rearrange was to move Joe’s desk into our second bedroom, creating an office for him, which means our formerly shared space (what is meant to be a dining area) has become mine.  We were both excited for the change, but (here is where the writing connection comes in) it also ended up shining a light on how much I haven’t been writing.   Continue reading “Rearranging the Furniture”

Beyond Shades of Grey

I never believed that the act of living happened in black and white.  I thought it happened in all the shades of gray, the spaces in between, the cracks and caverns and hidden places.  These past few weeks, I have felt life happening in all the colors that live inside the marrow of my heart, seen that the hidden spaces aren’t grey at all.  Through blindness, I have learned to see the colors and contours of pain and grief, love and joy, so much more vibrantly than when I was simply looking and unaware of what could bloom from the shades of grey, what lurked inside.  It seems cliché to say that through blindness, I have learned to see, but it is true in so many ways.  I have not become enlightened.  I have not become kinder or smarter or better.  I have just stopped looking, and in doing so, life comes into focus so much more clearly than when I took my eyes for granted, or time or space or love.  In just this week, I have felt desperation, compassion, depression, anxiety, affection, love, joy, contemplation, appreciation, despair, bitter disappointment and gratitude.  I have wanted to die and wanted to try to stay alive one more day. I have wanted to venture beyond what I know and I have longed to stay perfectly still.  I have done something new, and fallen back into old patterns that feel familiar and safe.  I have lived so many colors in just one week, not because I strived, but simply because I continued to exist. Continue reading “Beyond Shades of Grey”

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