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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

Horizon

Some days I wander around my house, feeling lost and disconnected, no grip on the texture of the morning or the space around me. I write about having forgotten who I am, but the truth is that I have never really known. My life has been a series of failed attempts at being who I believe others want me to be, failed attempts at being kind, having substance, living with interest and curiosity. I am not curious. I am simply hanging on, waiting for something that never comes because it has no shape, because the edges are dull, because the layers are a fiction, a fantasy, a ruse. I keep hoping that the horizon holds something for me, something that will glue me back together, lift me out of the ground. The horizon lies; it looks close enough to touch but is forever looming, taunting, out of reach.

When I was young, I thought I was supposed to be beautiful, was taught that beauty lives on the skin and the physical impression you leave behind when you have left the room; no-one talked of the beauty on the inside. The inside can’t be seen. I tried to be beautiful, but beauty is the luck of genetics, a luck I didn’t have, so instead, I retreated into shadows and marked up my skin; anything to be unseen. Being unseen is lonely, grows tiresome, has a weight that becomes unbearable. It is also an addiction, a habit, a way to give meaning to your life . It leaves you wandering and lost, looking for shapes in the darkness, coming up empty handed. But still you search.

I came to define myself by what ailed me, by loss and blindness, the afflictions of self loathing and now those that come with the cruel strike of the clock. I will always struggle with the emptiness and the wandering, unable to take shape or give off light, but I also understand that the inside can be seen, through poetry and art and acts of kindness. Perhaps the horizon isn’t a villain after all, but is there to guide the way, to remind us that life is both beautiful and unruly, cruel and abundantly generous.

Palatable

In my middle aged face, I see both echoes of youth and glimpses of what I will be as an old woman, but my reflection today is muddled. I am unrecognisable. My eyes grow cloudy with the passing of days and the shape of my jaw takes on the weight of decades steeped in grief. I can no longer turn the odd curves of my face into something palatable. My features change with the seasons, grow heavy with the stress of caring for loved ones, watching them die. One day I will be the whisper of a wraith, but today I am clay moulded by the hands of time, prisoner to the piercing fingers of the clock. What was colourful is now grey, no green pastures on the other side. I am aching bones and sallow skin and  scars born of an unwelcome wisdom. I am creaking knees and pain so sharp, it wakes me from sleep, although my sleep is shallow now, plucked from my grasp by hormones that betray me, fill me with fire and sadness and anger, all without roots or reason. I am a farce of time, a perpetual act of coming unhinged. I am middle aged. I am invisible.

Hope

Ever since my RP diagnosis, I have shied away from hope. Not a coquettish kind of shy, but a hand in the face, get the hell away from me kind of shy. I didn’t see the point of getting into bed with hope; I was all about getting on with the business of being blind, dealing with what was real and imminent. I saw hope as a tease, a liar, a villain. I refused to be prey to its allure. Until now.

Hope is still a mind fuck, but for the first time, I really want to be fucked. I want to be taken by hope, my thoughts flooded in it, my skin saturated by it. I want to fall into the surrender of hope, run barefoot, fly, forget.

When RP came into my life 19 years ago, cataracts came with it; in those 19 years, I have seen lots of eye doctors who told me that the cataracts couldn’t be taken out.; they were too small, not ripe enough, needed to be watched. I figured they were here to stay, just like RP, and I didn’t let the sexy face of hope tell me different. Then I moved to Ireland.

A couple of months ago, I saw an ophthalmologist in our town who had something different to say about my cataracts. She asked why they hadn’t been removed and told me that she didn’t see any reason why they couldn’t be removed. She said they must be driving me crazy, and gave me the name of a cataract specialist.

The cataracts are right in the centre of my visual field. Everything I see is blurry because of cataracts. They increase my light sensitivity so much, some days I am in tears from the pain. They give me double vision and fuck up my focus so I can’t read regular books. They have stolen colour and texture from the world and I am not ok with them anymore. I want them out.

I want to see all of the vibrant shades of green that cover this country I now call home. I want to turn the pages of a real book, discover what’s inside. I want to go outside without a hat, open the blinds and the windows on a sunny day and not be in pain.

Next week, I see the cataract specialist, who will decide the fate of the quality of my remaining vision. I know he may say what all the retinal specialists before him said, but this time I am bringing hope along for the ride.

Sometimes Happiness Holds it’s Breath

I am happy, but unsettled. Monumental life changes during a pandemic are, understandably, wrought with complexities; the thought of holding onto moments of happiness feels somehow criminal, undeserved. Covid has left the world in stasis, and although I am living in a new country, I feel I have only seen glimpses of the town I now call home. Beautiful glimpses, but still…. The virus has stitched a shell over the sun, spread a new brand of silence across the sky. Strangers long for each other in unexplored and unexpected ways. I live my contentment in whispers now, hold joy close to my chest, like a secret. Who am I to have these things, when so much has been lost? I know I am lucky.

Do not confuse feeling unsettled with doubt. I have no doubts about the decision to shed a life that was strangled by heat and the kind of violence only a city can offer up as daily garnish. I have no doubts about trading in that life for one that is awash in green and love and more possibility than I could have imagined. I have no doubts about abandoning the noise and taking the quiet gently into my hands. I am unsettled, but I know I have made the right choice.

For now, I live as if in a dream, on the precipice of daring to imagine that one day I will awaken to the sounds of a new world, one no longer trapped under the thumb of fear . I secretly yearn for the backdrop to reveal itself, to show me who I can become in this new place, or what parts of myself I can rediscover. The mist may have descended for a time, but I finally feel certain that it will clear. This, I now realise, is the nature of hope.

And so, perhaps happiness will hold its breath for just a while longer, wait patiently for me to peel back the layers and look clearly into the eyes of this new life I have forged for myself. I am content in this new longing, in this new waiting. I have already waited lifetimes.

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.

 

 

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