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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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self perception

Leisure

RP has thrown me into a life of leisure.  It sounds decadent,  but has felt confusing and burdensome.  It has been a struggle for me to brush off the restraints of socialization and embrace the time that RP has afforded me.  I had such grand ideas when I first stopped working in the traditional world; I was going to immerse myself in writing and finish my memoir, but instead I retreated and built a cocoon of shame and self loathing.  I spent years trying to figure out how to be a blind person and forgot how to be anything else.

Although my days of not working can be exhausting because of the need for constant visual vigilance every time I leave the house, I get to choose when and where I go.  I have the freedom to decide what my days look like and what path my life will follow, unencumbered by the 9 to 5.  in the past year, my focus and my attitude have shifted.  I have become a little less afraid and started to think about my life and myself in a more complete way.  I am not just the fat girl who is going blind.  I am a writer and a wife and a friend and a mom to 4 pets.  I am learning again to be person beyond the boundaries of my disease and feeling incredibly grateful for my life of leisure.

Pillars and White Canes

I am a walking disaster. The bruises on my arm and hand and legs, and the bump on my head, remind me that I can’t just walk through the world as if I am graceful, as if I can see.

My most recent assault was perpetrated by an enormous pillar in the middle of an aisle in a Sprouts grocery store.  The fucking thing was wider than me (which is saying something), and I didn’t see it.  I was on a mission for roasted veggie chips in the bulk section, but the pillar had other ideas.  I ran into it face first and hit is so hard that I ricocheted off and landed on my ass, hitting my arm and hand against the bulk bins.  It sounds comical as I write this, and I did laugh at the time, but it really hurt and got me thinking again about white canes.

Every time I have a more memorable collision, I start contemplating white canes.  I wish the damn things weren’t white; I am cool with the red tip, but I want a cane that can be personalized with dragons or flowers or pictures of pugs.  I have an array of aesthetic desires when it comes to accessories.  And honestly, the cane scares me.  I wonder what it will mean if I take the step toward a mobility device and how I will have to readjust to the world around me.

I know all the reasons why a cane would be a good idea; I could avoid collisions and accidents and it would let people know that I can’t see them.  The cane would scream, “blind girl coming through”, and the crowd would part to let me pass.  But maybe I’m not ready to be that blind.  Maybe I need to hide in my partially sighted shadow for just a little while longer.

 

Buzz Kill

The first time I got really drunk, I was 13.  I stole 2 bottles of wine from my mom’s plentiful collection and ran off in the dark to hang out at the junior high school with my friend Jean.  I discovered that night that alcohol strips the skin off of fear, and I liked the feeling of shedding the weight that life had piled onto my back.  I found a way to disappear into a space where I felt nothing, where I became no-one .

As I got older and my world fell to pieces around me, I found myself turning to the bottle more often.  My main task in life was finding ways to escape from the ache of my reality.  I dove into pools of cabernet and whiskey; emerging without a face or a heart.  I craved the boozy fog and the forgetfulness.  I drank in the guise of a good time, but fun was the furthest thing from my mind.  I hated my sober self, but my drunk self felt confident and beautiful.  My drunk self was a liar, a devil on my shoulder, a basket of thorns disguised in a soothing blanket.

Now, older still, and fat and lost and going blind, I drink to forget the darkness. I drink to fill a night that follows a lonely day of grim contemplation. I drink because it is something to look forward to. I drink to erase my self loathing for just a little while. I have been hiding within the sweet promises of bottles of wine and lost sight of who I am, or who I could be without the barriers of booze and flesh and rage. I don’t want to be the buzz kill. I am terrified of what I might face if I push the curtains aside. 

Poetry and Blindness

 

I realize that I am a rubbish blogger, tweeter, instagrammer and facebooker.  I go along feeling as if I have just written a blog post and when I visit my site, I find it has been months since I have posted a single word.  The truth is, some days I have nothing to say or I am afraid to face the things I know I want and need to say, and some days I write as if I am burning and crazy and elated and drowning. None of which leads me to blog on a regular basis.

Although I have not written a blog post in a long time, I have been writing and rising out of the ashes of a disease that steals not only my vision , but my sense of self and purpose.  I always knew that I wanted to write, that the spaces inside the words are where I feel my truth, but I got lost in the murky waters of RP.  I wrapped myself up in the task of becoming a blind person and forgot that I am a person beyond my blindness.

Outside of this blog, I write poetry.  Poetry is really my first writing love; it is where my creative pulse was born.  A few months ago, after a 20 year hiatus, I decided I wanted to start submitting my poetry for publication again.  I had some things published when I was in my 20’s, but life got complicated, I put my writing voice on a high shelf and I stopped sending my work out.  Starting this blog got me excited about writing again and although it took years, I finally immersed myself in my poetry and gathered up the courage to put my voice back into the literary world.  I was elated when the first response I got was a positive one.

Heather Lenz, the poetry editor at Stepping Stones Magazine, accepted three of my poems for publication.  I am over the moon.  I feel reunited with my self and my passion.  I feel as if I have stepped out of the darkness and learned how to weave RP into the fabric of my life rather that allowing it to smother me.

I can’t say that I will become a prolific blogger; I am still trying to get a handle on that discipline thing, but I do think I will be blogging a lot more.

 

The two poems that have appeared in Stepping Stones Magazine can be read through the links below.

Twenty-Five

Tiny Voice

 

 

 

Fitting

I have always lived under a veil of darkness, so it seems fitting to me that I am going blind.  Even as a child I drifted toward sadness.  When I was six, I was asked by my teacher to write a thanksgiving story.  My fellow students all wrote stories about pilgrims and big festive dinners with happy shiny families, but I wrote about a turkey who commits suicide.  I have always wondered how I knew what suicide was at only six years old.  Why did I feel connected to sadness and discontent at such a young age?  Well, one thing is for sure, it isn’t a surprise that  I am the very sad middle-aged woman that I am today.

I feel as if I have spent my whole life trying to feel happiness and to hold onto it for more than a few moments.  I seem to always return to dark places and habitual longings to simply disappear.  I have dreamed of being anyone but me and felt disappointed over and over again upon waking in the same damaged skin.  I have yearned for darkness and now darkness is coming.  My eyes are failing me just as I have always failed myself and everyone around me.  It all fits so perfectly together, the tragic puzzle pieces of who I am or who I  have allowed myself to become.  I am wrapped so tightly in sadness and self loathing that I cannot breathe without their cruel touch; they have defined me for so long and my fight is gone.  The older I get the more easily I give up and give in.  I am waiting now.  Waiting to go blind.  Waiting for the world to disappear.  Maybe I will disappear too.

Fragile Threads

Life is always hanging by such fragile threads and I find myself carefully maneuvering through the tangled web they weave.  Always living in a whisper and treading ever so softly, so as not to upset the balance.  I am a mask of quiet and patience, until my urge to scream overtakes me and I retreat into the dark crevices of my mind, where the only person who can hear this dangerous side of my voice is me.

I always emerge, patient and quiet and ready to carefully tread life’s path again. Ready for the curve balls and the dangers that lurk outside of my vision.  Ready to embrace the reality that has become mine; the reality of blindness and darkness that covers me like a chilling whisper.  Even blind, I will not break those fragile threads.

Disappearing

I haven’t been writing, but my mind is ablaze.  My life feels so heavy and my voice feels choked and uncertain.  I may, at times, wish that I could disappear, but I wake each morning and find that I am too much flesh and creaking bones and a head filled with words that long to be freed.  I will get there.  I need to believe I will.  Even the few sentences that get released are a beginning.  I am beginning again.

Lost Vision, Lost Voice

I haven’t been writing at all lately.  No blog, no poetry, no stories….just nothing.  I feel as if I don’t have much to say and when I search for my voice I find only silence and an emptiness that holds the weight of the world.  It is as if my voice is disappearing along with my vision and no matter how I grasp at the light, it flows, barbed and cruel, through my useless fingers.  I am trying to find ways to re-discover myself, but all that I see is unrecognizable and unwelcome. I am void.  I am a scar and a memory.  I am darkness.  I have no idea who I am.

Elation Eludes Me

I think I am seriously messed up.  I feel as if I should be elated to have learned that my RP is progressing so slowly, but instead I am feeling despondent.    It isn’t as if I wanted to hear bad news and I do, of course, feel very fortunate to be maintaining the sight that I have, but I also feel sad.  Perhaps it is because there is a sense of being back at old square one.  It is great that nothing has changed, but nothing has changed; I am still the same almost blind,  chubby girl living in the Purgatory of Sight.  I am neither this nor that; I still feel like nothing.

This may sound as if I am swimming in self-pity for no damn good reason, but this set of feelings exist for me outside of self-pity.  I think it is more self questioning.  If my vision is stable, then shouldn’t I be working and living and functioning the same as normally sighted people? If it isn’t total tragedy then be quiet about it and just try to forget. The problem is that I can’t forget because I still only have about 20% of my peripheral vision and that just isn’t enough for me to pass as a normally sighted person.

So, it seems that Purgatory is my fate.  It is what I live and what I write about.  It is where I feel stuck.  It is a place filled with fear and so much of the unknown.  Purgatory is where I learn and love.  It is a place before the darkness where hope is allowed to exist.  Purgatory is the place in which, today, I feel blank.  But, it is my place.

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