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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

Zelda, Persephone and Maud

When I started writing my blog, it was going to be a story solely about blindness, but as the years have progressed, I have discovered that the story of my blindness is the part that weaves itself into the whole, but isn’t the only thread that gives meaning. With this realization my blog has become about a life with blindness, rather than a life of blindness. Blindness makes my life more challenging, but it isn’t all of me; it often decides my fate, but it doesn’t define me.  It leads me to places I never imagined and to the rediscovery of places I had thought forever lost.  Blindness has brought friendships and community into my life in such fulfilling and sustaining ways, and it has allowed me to work through things I believed insurmountable.  But there is one battle I just can’t seem to win, the battle of Zelda. 

If you are acquainted with my blog, then you may remember Zelda, the thorn in my eye who I tried to see as a savior, but let’s just say it was a struggle to get clarity, and continues to be a struggle.  For those of you who don’t know or remember her, Zelda is my white cane.  I wrote a whole series of posts about my early days with Zelda during my O&M lessons, if you are interested in reading a bit about her background.  

So, forward almost three years, and the truth is that Zelda has rarely seen the light of day.  It’s sad really, given that she was supposed to bring some light into my hands and help guide my way over the precarious streets in this city of questionable angels, but I just can’t make peace with her, no matter how many times I trip or fall, no matter how clear it is that I need her.  

I stashed her at the bottom of a bag, which I put in another bag, which I put at the back of a high shelf in my closet,  in an attempt to forget about her, but the bruises seem to fade much more slowly as I get older, sitting on my skin as a reminder that I am not safe. My husband will periodically mention Zelda, ask where she is and if I might try her out again.  I know he worries about me.  I tell him I don’t want to be the blind wife.  I don’t want him to feel ashamed or embarrassed.  I tell him I wish I could be less broken, feel more like a partner and less like a burden.  

I do recognize that I need Zelda, so I started to think about what it is that bothers me about her.  The reasons are many and complicated, but one tangible thing is that I find her to be way too tall.  So, I decided to try out some shorter canes.  I am just over five feet tall, and although my O&M teacher was a fan of a taller cane, I never felt comfortable with Zelda’s height.  So, enter into the picture, Persephone of medium height, and Maud who is short and round, just like me.  I don’t know if the shorter canes will help me feel more comfortable, but I do know that I have to try something.  The thing is, the virus took over just when they arrived, and now we are all at home together for the foreseeable future. When the stay at home order is lifted, I just might go outside and give them a whirl.  

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.   

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.

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”

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”

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