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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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writers block

The Punisher

You know those days when the words just won’t surface and you feel blank inside?  Those are the days that make me stress and pace and tie my thoughts into a tangle of barbed wire.  Those are the days when I call myself a failure and question my choice to be a writer.  How can I write if I am empty?  If I have nothing to give?  If I can’t even form a coherent sentence?    I suppose I am hoping that this brief post will kick me back into action

I am having some health issues – not serious, just annoying – and they have been keeping me away from writing; don’t worry, I am not going to enter into a litany about a bunch of boring health problems that come with middle age. Although, I will say that if you are reading this and you are under 40, take care of your bodies; you will be so grateful you did. I wish my brain could just keep on grooving, no matter what protests my body makes, but that just doesn’t seem to happen.

My brain feels dormant, but the punisher inside of me never sleeps.  I have felt like crap and still I beat myself up for not getting any writing done.  I sit at my desk, in pain and discomfort, and tell myself that I am a useless fuck who can’t even come up with one word for a poem I have been working on for ages, but who gives a crap because I am total shit as a writer anyway; the string of recent rejections proves it.  No one can argue with the punisher.

Then, the punisher chastises me for being negative and too stubborn and too stupid to create a positive dialogue in my mind; if I could just think good thoughts, everything would be better. But, my brain isn’t wired that way.  Something must be wrong with my brain.  I am totally screwed and should clearly never attempt to write another word. I should probably just stay in the house for all time, so as not to inflict people with my negative defective brain.

So, I get some ice-cream and sit on the couch, and the punisher sits right next to me, whispering in my ear, telling me that I am a fat loser who can’t even commit to a healthy lifestyle change. If I were a good person, I wouldn’t eat ice-cream, or crisps or sourdough toast.  So, now, I am a useless fuck, wannabe writer, fat loser, bad person with a defective brain.

The only thing left to do is go to bed.  The punisher has been particularly brutal this week, so I am exhausted and actually fall asleep, and stay asleep until it’s 4am and time to get up.  I stretch my  legs. I feel a bit weightless.  The punisher is nowhere in sight.

Sometimes, it takes a few hours of allowing myself to sleep and check out, to realize that it is ok not to write every day, to give myself time to heal when my body is in major protest mode and let my brain be still for a while.  It is ok to be whoever I am in any given moment and to eat ice cream; it doesn’t make me useless, just human.  So, fuck you punisher, because seriously, sometimes a bowl of broccoli just isn’t going to cut it.

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.

The Sad Turkey

So, I started this post at Thanksgiving, but didn’t want to wait until next Thanksgiving to post it; so perhaps untimely, but here it is:

When I was six and in first grade, everyone in my class was asked to write a Thanksgiving story.  It was the writing of this particular Tday tale that marked the moment I truly became a writer.

As most children do, the majority of the class wrote stories about pilgrims and feasts and family togetherness.  I took a different approach.  My story was called, “The Sad Turkey”. It was a simple story really.  A turkey named Jake was sad.  He was sad because he knew Thanksgiving was fast approaching and that he would be killed and become a part of the feast.  Jake decided to take the power of his life into this own wings and walked out into the street to commit suicide.  He was promptly hit by a truck and killed.  The end.

I know this may seem like a grim tale coming from the mind of a six year old child, but I think it was a marker of my creative spirit and what was to become my creative passion.  I  became a writer the minute those words spilled out onto the page and I have always been particularly proud of “The Sad Turkey”

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

 

 

 

Lethargy

I am silenced by grief, by shadows and blindness and the infernal heat wave that coats my city like an itchy, heavy blanket.  In my mind I am a writer, but in reality, I feel myself coming unhinged.  I try to climb up through my lethargy and snap my pieces back into place, but the heat pushes me down on the floor, where blindness doesn’t matter and the stillness is intoxicating.  If I am perfectly still, the heat 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 face of my fear and the darkness that chases me through the minutes of my life, whispering that I am useless and defective.  But, the sacrifice is my voice, and it is a sacrifice I am not yet willing to make.

Loss

I have been away from my creative self for so very long; consumed by grief and struggling under the weight of loss.  For almost three years I have been defined by illness and death.  I assumed the roles of watcher and caretaker.  I gave over my heart and my strength.  I don’t regret it.  I truly got to know my brother and to show him how much I loved him.  I wouldn’t have chosen to do anything else but be there for him, as a friend and a sister and to try to quell his fear.

Now that he is gone, I am led, inevitably, to thinking about how much of my life has revolved around loss.  Loss of loved ones, loss of freedoms and of course, loss of vision.  There are so many things that just aren’t there anymore. It is as if my mother and my brother and the edges of the world have fallen into an abyss that I will never be able to gaze upon or reach.  I realize how losing my vision is so much more like a death than I had ever known; they are both disappearance, silence and blackness. Some days it is as if I have forgotten that my brother has gone and I pick up the phone to call him and tell him about a new mystery show I have found that I know he would love; I forget how much of my vision is gone and I walk along the sidewalk as if I can see the whole world, until I  fall into shadow and watch the sidewalk fade away.

Perhaps I fall into these moments of forgetting so I can cope with all the other moments; when I wish that I could hear my brothers voice, feel my mothers comforting arms and look into the brightness of the afternoon.

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.

So Far Beyond Writers Block

I haven’t written a word in ages.  Not a blog post or a letter or even a grocery list.  I try to read other blogs about writer’s block and books about writing tools, but I think what I  have isn’t writers block, but total writing avoidance.  I find myself actively avoiding this blog and the computer in general.  I don’t check the email address associated with this blog because I am afraid that if I do I will feel guilty for not writing.  But, when I come here and I write and I share my experiences and I put out a new blog post, I feel elated. I know that my one true passion is for writing and yet I avoid it as if it will somehow cause me harm.

I have thought about the possibility that what I am most strongly avoiding is writing about RP.  I find myself avoiding a lot of things because of the RP; some because of physical limitations or ramifications and some for purely emotional reasons.  But, I don’t have to write about RP.  I choose to write about RP because it is what I know and it is so entangled with every moment of my life, but I don’t write because I have RP.  I loved to write long before I knew I was going blind and even then I suffered from this total writing avoidance.

So, maybe I am just lazy and I don’t want to put in the work it takes to write something I can feel proud of.  But I will do the dishes and clean the house and work out and do the laundry and a host of other things before I ever get around to sitting down at the computer.  I will take the time to crochet 20 scarves to avoid writing.

Maybe it is fear.  But of what?  Pressure, failure, discovery? Perhaps I am afraid that I really don’t have anything to say or that if I try I will find my voice has disappeared.  I don’t know.

But I do know that I am here now, in this moment on this day, writing.  And it doesn’t have to be perfect or great or even good as long as the words are there.

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