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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.

Month

November 2017

Sheila-Na- Gig Winter Poetry Contest

I am thrilled to have been selected as the winner of the Sheila-Na-Gig Winter Poetry Contest. The issue is now live! Thank you to Hayley and Jessica for this huge honor!

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Waiting Games

For new readers:  When I refer to Zelda, I am not talking about a pet or a child or a childhood toy I just can’t seem to part with; Zelda is my white cane.

It seems I am always waiting; waiting for the next decline in my vision, waiting to hear about that poem I submitted 6 months ago, waiting for the package to be delivered from Amazon, waiting for the scale to give me good news, waiting for the next time I get to eat, waiting for the end of the day and that bottle of wine, waiting for it all to be over. And then, suddenly, something I have been waiting for, arrives.

On Monday of this week, I spent the day seeing doctors and getting tests; nothing serious, just inconvenient, exhausting, and honestly, pretty gross, so I am not going into further detail.   That said, I spent a lovely day maneuvering through the seriously fucked up American healthcare system, without Zelda.  I have been leaving her at home a lot lately; we are having a heat wave in Hollywood and I have been feeling lazy and not wanting to carry yet another thing when I go out, so Zelda gets left behind.  I may have also still been in a tiny little bit of denial, but it really is fucking hot here.

Anyway, I made it through most of my healthcare nightmare day unscathed, until I was being escorted out of the maze of the hospital by a kind, lovely and very fast walking ultra sound tech.  I was matching her pace, feeling confident striding down the corridor, and then she said, ” take a right here”, and she turned and I didn’t and the collision ensued.  When she said to turn right “here”, I thought she meant a right turn that I saw coming up about 10 feet ahead of us; the right turn she was actually talking about, I didn’t see. I had no idea what was next to me, or how close I had been walking to the wall, or how many adjoining corridors we had passed.  When she and I collided, my confidence plummeted to the ground, but I quickly scooped it up, apologized to her and told her I have severely limited vision and I really should have been using my cane.  I felt bad about almost knocking the poor woman down, but I didn’t feel embarrassed about admitting that I had a cane and that the collision was my fault because I should have been using it; it was just the truth.  If I had taken Z with me, the tech would have walked slower and I wouldn’t have been trying to groove right alone with her, feeling dangerously confident about my non-existent visual capabilities.  I took my time for the remainder of my walk through the hospital, and found a comfy chair to settle into while I waited for my husband to pick me up.

Yesterday, I was taking one of my frequent walks to the grocery store, sans Zelda, for the same reasons listed above.  As I approached the first street crossing, I thought I heard someone walking near me, but I had no idea how near. I slowed my pace a little, tuning my ears to the sounds of footfalls and rustling clothing, but when I got to the corner and reached for the cross button, I bumped into a woman who must have been just inches away from me. I still get fooled by RP a lot of the time and think people and objects can’t be as close to me as they actually are; my ears are not that well trained, yet.

The woman was super nice and friendly and didn’t seem to think twice about our collision, but it gave me pause. I realized, or perhaps I have known for a while, that my vision has gotten worse.  Decline in vision is something that someone with RP is always waiting for, but in my case there has been a lot of uncertainty about whether or not it is actually happening.  I am fortunate that my vision loss has had a very slow progression, and there have been so many times when I feel pretty convinced that I am not seeing as well,  and it turns out that my vision is stable.  This time is different. I feel the world pressing in against me; the shrinking circles of my vision have become more prominent.  But, somehow, being in the center of the decline, looking at the world with the heightened sensation of tunnel vision, I don’t feel afraid.  I have been waiting for this.

During the rest of my sojourn to the grocery store, I must have had at least 10 near collisions and people coming at me from, seemingly, out of nowhere.  I kept thinking over and over again, “I wish I had Zelda with me”.  I think I’ll take her out today, no matter how hot it is.

 

Community and Liebster

I have always liked my alone time.  I have only a few friends, but they are close friends.  I don’t like big crowds or loud places, and I would rather be at home than anywhere else.  I have taken numerous personality type assessments and every single time, the results tell me that I am an off the charts introvert, but I still crave the feelings that come with being part of a community.

When I started “Stories from the Edge of Blindness”, part of my motive was to find a place in the blind community; I ended up finding that and so much more.  Recently, I have really allowed myself to become involved both with my own blog and with others.  I started reading other blogs avidly and I have found some amazing writers and people through the blogging community.  I have found this community to be supportive and creative and intelligent and amazing.  I am grateful to be a part of the incredible community that blogging and bloggers have created.

Recently, I was selected by two wonderful bloggers; Ayotunde who writes EINCENDIUM,  and Glen who writes, Well Eye Never, to participate in the Liebster Award.  I am very grateful to both of them for recognizing me.

Liebster is originally a German word meaning many things, such as “good” or “kind”, but also “valued”. The award is a way to draw attention to blogs under 200 followers, and is given by bloggers to other bloggers. As a nominee, I’m to pass this on to eleven new bloggers. But first I’m going to answer the eleven questions given by Ayo and Glen.

From Ayo:

 1)What’s your weirdest schooling experience?

My weirdest and perhaps most educational experience in school was the two weeks I spent in the Colorado Rockies with a group of fellow students I had never met before that sojourn.  It was quite the introduction to a new school.
2) Where do you intend to be in about ten years time? With who? Doing what?

With my husband, writing and living in a quiet place.
3) If you could go back in time, what will you change?

I would definitely focus more on school. I was a terrible student and that has made life more challenging in ways that could have been avoided.
4) What negativity have you been finding it so hard to get over, and why?

I am constantly plagued by self- doubt.  I have always felt that I am not good enough, that I don’t have the right to a voice or to even being alive.  I don’t know where these feelings manifested, but I am constantly working to dissolve them.
5) What inspires you the most to write?

The struggles and the darkness inspire me most in my writing.
6) Can you in three lines tell what your perfect picture of love will look like?

In the perfect picture of love, there is laughter, respect and comfort.
7) What movie have you watched, that you benefited so much, you can forget?

A beautiful Japanese film called “Afterlife” It is cinematic poetry.
8) What’s your deepest point?

I feel others pain very profoundly.
9) Have you ever been depressed? How do you get over it?

I have lived with depression since I was a child and the older I get, the better I get at dealing with it; I get help when I need it and I don’t hide from the reality of having depression. I explore my feelings, I talk about them and I face my demons, mostly through writing.
10) If you were to describe yourself with three words, what would it be?

Writer.  Loving.  Complicated
11) If you could do anything for one day, what would you do?

I would go to Hogwarts.

 

From Glen:

  1. What is your favourite food?

Indian food, absolutely!

  1. If you could set a world record for something, what would you want it to be?

I think it would be the high jump; I would love to be able to fly in the air the way those jumpers do.

  1. What is your favourite sport?

I am not much of a sports person, but if I had to choose a favorite, it would probably be gymnastics; it’s that flying in the air thing again.

  1. If you could invite 3 celebrities over for a dinner party, who would it be and why?

Judy Dench; she is an immense talent and there is wisdom in her eyes that I just want to be around for a little while.

Sylvia Plath; she is the writer who made me fall in love with poetry.

Amy Tan; well, who doesn’t want an evening of the kind of genius and magic that is Amy Tan?

  1. Who would play you in a film of your life?

I think probably Glen Close, but I don’t know why.

  1. Do you cook/bake?

I bake bread; I love the kneading part because it is so cathartic.

  1. What is your favourite book?

This is impossible to answer.  There are so many books that have impacted my life.  A few:  Harry Potter (all 7), The Joy Luck Club, Asleep, The Woman in the Dunes and so many more.

  1. What is your favourite season of the year?

Autumn; it is a season of beginnings.

  1. What advice would you give to new bloggers?

Read other blogs, and I mean really read them.  Find writers and subjects that inspire you and resonate with you. You will learn so much and make friends and your life will be enriched.

  1. What’s the strangest thing that’s happened to you this year?

Life in my neighborhood is pretty strange every day, so I can’t really pin one thing down.

  1. Are there any quotes or mottos that you live by?

I wouldn’t say I live by it, but I love it:

Words to me were magic. You could say a word and it could conjure up all kinds of images or feelings or a chilly sensation or whatever. It was amazing to me that words had this power. Amy Tan

This is the part where I am supposed to nominate 11 other bloggers who have less than 200 followers.  I have no idea how to tell if someone has 100 or 1000 followers, so I nominate anyone reading this – who has less than 200 followers – for the Leibster Award, and invite you to please put a link to your blog and a synopsis in the comments section.  I look forward to reading all the responses and learning more about all of the amazing writers whose blogs I read.

My Leibster Questions:

  1. What inspired you to start blogging?
  2. Who are your 3 favorite authors?
  3. What are you most passionate about in life?
  4. Are you an only child, oldest, middle, youngest?
  5. Where is the most beautiful place you have been, real or imaginary?
  6. If you could visit any country, which would it be?
  7. Are you an introvert or an extrovert?
  8. Do you have pets? What kind?
  9. What languages do you speak?
  10. What is the most recent dream you remember?
  11. What is one of your favorite words?

 

 

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.

On the Heels of Rejection

I woke up to some surprising and great news this morning. A short story I wrote has been accepted by Sick Lit Magazine!  Writing this story was a big leap out of my comfort zone and the fact that Kelly Fitzharris Coody (Sick Lit’s publisher) wants to publish it, puts me over the moon. I will post a link when the story is up on her site, but I wanted to share the news!

First Love

“Stories from the Edge of Blindness” was my first real foray into writing non fiction.  I decided that I wanted to tell my story in a different way, but to this day I struggle with it. It isn’t the kind of writing that comes most naturally to me.

My first love, as a writer, is poetry.  It isn’t that my poetry is magnificent where my non fiction is lacking, but more that poetry is how my mind works.  It is how the words form in my brain and flow most naturally from my pen. Poetry is a love affair with language; it is life, and feelings and senses, and experiences, broken up into fragments that bleed and stick to the bones.

I fell in love with poetry in a somewhat cliché, but still powerful way.  I was in my early teens and had discovered Sylvia Plath; an icon for depressed and angst ridden teens everywhere, and an absolute genius.  I read “The Bell Jar”, and mixed in with the material in the afterward of the book, was her villanelle, “Mad Girls Love Song”.  It changed my life.  It was then, and is today, a parcel of visceral and imaginative perfection.  Like Plath herself, it is at once cloaked and raw.  “I shut my eyes and all the world drops dead” – simple, complex, powerful and perfect.  I was hooked.

I realized I had almost always seen poetry in all kinds of art.  I remember going to a Picasso exhibit with my step mother, when I was 9 or 10; I didn’t know anything about art or about Picasso, but one of the paintings in that exhibit  taught me what art is really about.  The painting is called, “Portrait of Ambroise Vollard“.  It is a cubist painting of a bearded man, done in mostly shades of gray and blue.  Although the man in the painting doesn’t really resemble my Dad in his features, my Dad has almost always had a beard and, as a 9-year-old, when I saw that painting, I saw a picture of my Dad, steeped in sadness and broken up into fragments.  I remember standing in front of the painting for a long time, unable to tear myself away from the image and the emotions it brought out in me.  I don’t remember any of the other paintings from that exhibit, but I have never forgotten that one.  When I fell in love with poetry, I realized it was, to me, in many ways what that painting was, images in fragments.

For years, all I wrote was poetry and it didn’t occur to me to even try to write anything else, until RP came into my life.  After my diagnosis, I tried to write poems about RP, but I couldn’t; perhaps it was all too new or maybe I wasn’t ready to face the reality of it.  So, at my husbands suggestion, I started this blog and threw my hat into the non fiction ring.  It was slow going; I posted sporadically and initially saw blogging as an obligation, but it has become illuminating and satisfying in ways I had never imagined.  “Stories from the Edge of Blindness” has allowed me to exercise and expand my writing voice; I think it has made me a more well-rounded and braver writer.  It also helped me get to a place where I could start writing poems about my RP journey.

I will always write and I will always write poetry, but I have realized that my life as a writer can be as diverse as I want it to be; I have even started dipping my toes into the well of short fiction.  It can be a challenge to move back and forth between genres, but it is a challenge I now welcome.

 

Diamond in a Vitamin Jar

My contribution to the November issue of Visual Verse has been published.  I have to add a caveat, once again, and say that I only had an hour to write this poem and it isn’t a masterpiece by any means, but the exercise is fun and interesting.   That said, my poem, “Diamond in a Vitamin Jar“, can be found on page 22.

Writing Sample Part 4 – Surrender

It’s impossible to think about going blind without thinking about loss.  When you have a degenerative disease like RP, the loss comes in unpredictable bursts that steal pleasures and pluck freedom from disappearing fingers.  In the weeks just after my diagnosis, I thought a lot about how my life would change and what blindness would take from me; I was most afraid of losing the ability to read the printed word.

 I have always loved words; the way they can simultaneously smooth and sharpen the page. A life that leaves me unable to see the printed word is unimaginable.  I feel paralyzed by the thought of no longer seeing how the shapes of the words meld and flow.  I wonder what kind of writer I will become when the pages turn dark. Perhaps I will learn to rely solely on the musicality of language; the taste of the words in my mouth and the feel of their vibration on my lips. I am sorrowful when I think of no longer taking the words in with my eyes, but I will read voraciously until the darkness has swallowed them up.

Although the loss of the ability to read was my greatest fear after RP became part of my life, one of the most significant rites of passage in an RPer’s life is giving up driving.  I was a terrible driver, for now obvious reasons, and always felt anxious behind the wheel, but I have definitely felt the loss of freedom since I gave up my car for less convenient forms of transportation.

Because one of the first things that alerted me, and the doctors, to my RP was decreased night vision, the consequential difficulty led me to stop driving after dark immediately following my diagnosis. The combination of the darkness and the glaring lights of oncoming cars made it so I simply couldn’t see well enough to drive safely. In truth, it hadn’t been safe for years:  I had just been lucky.

I had also, in daylight hours, had several run-ins with walls, poles and curbs that seemed to jump out at me from nowhere.  This started serious contemplation of whether I should continue driving at all.  Walls and curbs only hurt my car, but what if it was a child or an animal that I didn’t see?  I couldn’t bear the responsibility of hurting someone just because I didn’t want to give up my car; so, about seven months after my diagnosis, I gave up driving altogether.

When I decided to give up driving, I chose to surrender my license and make the rite of passage official; I had no reason to hold onto it when I knew I would never drive again.  I needed to make it real.  I suppose it was my way of dealing with the loss head on, not allowing myself to live in denial about the gravity of my disease and how it was going to continue to change my life.  I was empowered because I took charge of the decision and I knew I was doing the right and responsible thing.  I felt the loss, but it was intermingled with a sense of relief.

It the first couple of months without my car, I joked about how lucky I was that I never had to be the designated driver and how I had always been a lousy driver anyway, so no big deal that I would never drive again.  True statements, but I also started to see how my disease was a burden to the those around me, and how I was going to become less and less practically useful as the years and the RP progressed.

I hated listening to my family agonize over who would drive me home after a family dinner, knowing how tired they all were.  I hated knowing that once I arrived somewhere, I was stuck until someone else was ready to leave; I had lost the freedom to come and go as I chose and because of this I became more reclusive.  I didn’t want anyone to have to take care of me.  I was determined to take care of myself.

My family never complained and I knew that they were just trying to make things easier for me, but I needed to find a way to assert my independence.  I had always had a fiercely independent nature and I wasn’t going to let RP rob me of that.  So, I learned the ins and outs of the LA transport system, which is no small feat given that it is the worst in the country.  I remember the first months of riding the bus, looking out the window at the enraged faces of the drivers in their cars, and feeling lucky that I got to spend my ride home listening to music, far away from the stresses of road rage and blaring horns.

Surrendering my license ended up saving an important part of who I am, and showed me that my determination means something.  And let’s be honest, L.A. busses are full of stories dying to be told.

Writing Sample Part 3 – Signs

We all look back at our lives, pick them apart and look for clues that would have helped us along the way, told us what was up ahead.  We discover things about ourselves that may have been present or growing since childhood, and inevitably think about the signs we might have missed.

A few months ago, I was going through some old family photos, and I came across a picture that was taken on a beach in Mexico when I was about three years old.  My eyes were squinted against the glare of the sun and I was reaching for my mother’s sunglasses, perched on a rock nearby.  I looked desperate to escape the bright sunlight and it is a look I recognize, a feeling I have experienced for years.  Growing up in California, my family was always going to the beach.  My parents and my siblings loved spending hours in the sun, but I preferred cloudy days.  I was called strange, moody and different, but even then, the sun hurt my eyes.

As I got older, I developed a reputation for being clumsy; I was always tripping and stubbing my toes and knocking things over. I couldn’t hit a softball in P.E. class or catch the ball when I was forced into the outfield.  I appeared careless, un-athletic, lost in day dreams; I didn’t know it then, but my retinas had begun to die a slow death.

I remember an afternoon when I was learning to drive; I was in the car with my mom, and she began shrieking that I was driving too close to the edge of the road and we were going to go off the cliff.  My mom was prone to dramatic expression; there wasn’t really a cliff, just a five-inch drop off the road into the dirt.  She thought I wasn’t paying attention, but actually, I had no idea how close I was to the edge.  I couldn’t see the side of the road.

Into my 20’s I continued to trip and fall and live up to my reputation as either the clumsy day dreamer, or the newer moniker of drunk girl.  I had a friend tell me I was the only 24-year-old she knew who actually fell down and skinned her knees.  I missed curbs, crashed into street lamps and collided with pedestrians racing down the Boston sidewalks to escape the cold.  I thought perhaps my friends were right and  I was drinking too much; I had no idea that the edges of my vision were disappearing.

For years, I nursed the bruises that peppered my skin and laughed along with my friends about my clumsiness.  I chastised myself for being careless and inattentive.  After my RP diagnosis, I became diligent in searching for current markers of my deteriorating vision. I notice how the glare of the sun gets meaner and how once effortless tasks are becoming more difficult.  I feel the light slipping away every time I call out my husband’s name, unable to find him right in front of me.  I feel helpless and terrified as the darkness slowly swallows up the contours of the world.

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