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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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Pugs

Hiking With Dogs (A Rant)

There is a popular hiking spot near my apartment.  It is a walk up into the Hollywood Hills and then about 2 more miles up a path that has been carved into the mountain.  There are a lot of beautiful hiking spots in L.A.. This isn’t one of them.  But, it is a good work out and it’s free and it  doesn’t require a car to get there (which means I can go on my own), so yesterday I decided to hike instead of getting Pinkberry.  It was a hot day.  Really hot.

Runyon Canyon consists of a paved trail on one side, man-made step like things on the other, about 3 trees and no shade.  There is no respite from the heat when you are up there and the higher you climb the hotter it gets.  So, why the fuck do people bring their dogs?  Obviously, this is something that upsets me.
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The Flip Side

Ironically, given that this is National Poetry Month, this post is not about poetry (they can’t all be), and it may not be particularly poetic.  I just finished and submitted one of the most personal poems I have ever written, and although I am thrilled that it is the month of celebrating poetry, and I am reading it voraciously, I need to take a couple of days away from writing it.

I recently had what I now call ( thanks to Katrin),  a “sucks to be blind” day.  I need them every once in a while; I got through it, I always do, and I emerged from it on the flip side of what blindness and RP have brought into my life.

I have read a lot of blog posts, written by visually impaired writers, about the benefits of being blind.  I always scoffed at them.  What could possibly be beneficial about having a disease that is causing you to lose the one thing that pretty much everyone is terrified to lose?  I thought it was total bullshit.  I was wrong.
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Vigor in my Stride

I have often lived on the darker side of things, turned toward sadness and despair, wrapped myself in a cloak of sorrow.  I know that this way of living and thinking is simply part of the way I am made, but as the year ends, I find myself reflecting on the light more than the darkness.

As I approach the last year of my 40’s, I am feeling the vigor in my stride.  2017 has been a year of awakening.  I have begun a new phase in my RP journey, and although it has been challenging,  I found the strength to face the changes in my identity as a blind person.  With Zelda (my white cane), I took a new path and I am heading to a place of acceptance.

I have also, finally, stepped fully into my writing shoes.  For years, I called myself a writer, but I wasn’t writing.  This year, my writing took flight; it isn’t that I spent the year writing masterpiece after masterpiece, it is that I dedicated my creative and emotional self to a writing life.  I write every day and in the act of writing I have truly become a writer.  The words have always been there, but now they have been sparked and have come to life in ways that continually surprise me.

When I started “Stories from the Edge of Blindness”, many years ago, I kept myself isolated and wrote only the occasional post.  I didn’t really participate in the blogging world, until this year.  I am immensely grateful to have found an amazing and supportive community of writers from all over the world.  I have discovered so many talented writers through the blogging community and learned so much from the stories those writers share. Being a part of such a diverse community is illuminating and inspiring; it is a true gift.

As I write this, I look around at my apartment, at all the signs of the wonderful life I have with my husband, at the pugs and the cats sleeping comfortably; I sink into the quiet spaces of the morning and I know that I am incredibly lucky.  I am not thinking about what I don’t have or what I haven’t done, but about how full my life is. Rather than longing to put 2017 behind me, or shrug it off as yet another year of failures, I approach its end feeling grateful and energized.  I am so thankful for all of the glorious, complicated, challenging and amazing things this year has given, and excited about what 2018 will bring.

Tiny and Immense

When I was first diagnosed with RP and thinking constantly about what it would be like to be blind, I was gripped by the spikes of claustrophobia.  I imagined that the world would become tiny, the darkness choking me and snatching my breath; the term tunnel vision, which is used liberally in describing what it is like to have RP, absolutely terrified me.  The thought of it was constricting; even writing this, I am holding my breath, as if doing so will stave off the inevitable. The day of my diagnosis was the day I started waiting for the world to close in on me.

I have always been somewhat addicted to darkness, prone to seeking out its path and wrapping myself up in the comfort of its fingers, but in the 15 years since my diagnosis, darkness has taken on new meaning and form; it has left the confines of my mind and heart, and settled into my eyes. I have come to realize that the reality of darkness, in relation to blindness, is the opposite of what I originally feared.

Now, the darkness feels immense. It makes me vulnerable and exposed rather than protecting me, like it did before RP showed up.  The darkness swallows the edges of everything and comes into a twisting life of its own.  In the dark, I feel as if I am always about to fall and whatever space I am in loses its definition and its structure.  It is unsettling.

The most recent experience I had of total darkness, was during my ERG, which you can read about here. During the ERG, the darkness came to life; I could see its tendrils twisting around me, escaping boundaries that only exist in the light.  I realized that the darkness is limitless; it has no parameters and nothing about it is predictable.  It takes something compact and at once expands and erases it.

Although I am still afraid of  what continued vision loss will do to my life and to my relationships,  I arrived at a place of acceptance a long time ago.  I suppose I have grown to both love and fear the darkness.  RP has been a part of my life for a long time; fighting it is futile and although I never welcomed it, blindness is a part of my fabric and I accept its texture.

I want to help expand peoples understanding of what it means to be blind and how a disease like RP works, so I am going to write a series of posts about the mechanics of RP and how it has manifested itself in my particular case. The first in the series, called, “What do you See?“, I posted a few days ago, and I will continue the series next week.  I hope that anyone who reads “Stories from the Edge of Blindness” feels free to ask questions; if there is something you are particularly curious about, please let me know and I will write a post about it. Thank you for reading and for being a part of my crazy road to blindness.

You can also find me on Facebook and Twitter

And, if you are in the mood for some pictures of some seriously cute pugs, you can find my babies, Blossom and Jade, on Instagram.

Stories from the Edge of Blindness is Spreading its Wings

I have been making some changes to the blog lately, as well as trying to give it more of a presence outside of WordPress.  In case you hadn’t noticed, the look of the blog has changed; I had been using the same theme I began with in 2010 and it was time for an update.

“Stories from the Edge of Blindness” can now also be found on Facebook.

On Twitter, I am @floweringink

And, if you just want to see some pictures of the cutest pugs on the planet, you can find them on Instagram.

Spread the love!  Follow, like and share me (does that sound dirty?)!!!

A Quiet Sunday

The pugs and I just got back from our long walk of the day.  Sundays are my favorite because the neighborhood is still and quiet, even at 9 a.m..

I took them around the block to the street just west of us, which is a beautiful street with lots of grass and trees and an expansive sidewalk.  We came across a couple of people setting up yard sales and a jogger or two, but mostly it was just the 3 of us.

The morning was so lovely, I decided to take them to the park, hoping that we wouldn’t run into any terrifying rageful guys; sorry if you were hoping for another crazy in the park story……didn’t happen today.  The park was almost empty, except for a teenager riding around on a dirt bike and some Russians playing chess at a picnic table.  It was perfect.  We ran around on the grass and the girls had their way with the trees and it was just a frolicking good time.

When it started to get warm, I coerced the girls into heading in the direction of home.  I don’t know if you know anything about Pugs, but they are so stubborn, they give stubbornness a run for its money.  They do what they want, when they want….unless of course there are treats involved, and then they will do what you want..maybe.  They are so smart and amazing and loving, and I embrace their stubborn streak with totality; I am, after all, pretty damn stubborn myself.

So, with many treats enjoyed, we finally head toward home and I see a man across the street looking for something in his car. He was in his late sixties or early seventies, wearing khakis, a cream colored button down shirt and a beige cap.  He looked like a run of the mill guy giving his classic ford some TLC on a Sunday morning.  I just happened to turn my head in his direction, or I wouldn’t have had any idea he was there; he caught my eye and scowled – not unusual in my neighborhood; older conservative men can often be disapproving of all of my tattoos.  Jade was sniffing around a particularly enticing patch of dirt and I was minding my own business, just paying attention to my dogs, when all of a sudden, from across the street….motherfucker motherfucker motherfucker, fuck you satan fucker. I guess we must have caught the guy on a bad day.

Morning Walk in the Park

Since Joe and I have embarked on this getting up at 4am thing, the second dog walk of the day is around 8 or 9, and I like to take the girls to the park if the temperature is still cool.  Today was particularly nice, not even 70 degrees, and I had hoped to spend a little longer than usual at the park.

As we headed down our most commonly utilized route, I saw a dog approaching that we didn’t know, so I decided to take a detour around to the back entrance of the park.  It is a bit further, but the street we walk down is quiet and the back of the park is often peaceful and fairly uninhabited.

When the park came into view, I saw that the area we were heading toward looked empty: at least I didn’t see anyone or any dogs inside my not so trustworthy field of vision.  The pugs were happily sniffing everything in sight – a few grossly unidentifiable things that they had to be pulled away from – and generally having a fabulous time.  We don’t often walk down this street, so everything must have smelled new and exciting to them.

When we walked into the park, I  noticed a young guy coming toward us, down the ramp that connects 2 small lawns to the larger park area.  He was walking fast and looking over his shoulder every few seconds as if he were being followed.  He was a slight guy with very skinny arms and legs.  He wore black shorts that were tattered and falling off his narrow hips; his white t-shirt was barren, torn, and covered in dirt.  The whites of his eyes blazed in my direction as he realized he wasn’t alone.

He sped up and in seconds was right next to me.  He paused, careened his head in my direction and shouted at the top of his lungs,” YOU FUCKING BITCH”.  He balled his hands into fists, turned and ran out of the park.

I checked to make sure that my pugs weren’t traumatized by his outburst, and after giving them treats for being good, sweet girls who knew not to provoke the crazy guy with a bunch of barking, I walked toward the ramp to the main park.  There was a man on his cell phone, talking to the police and giving a detailed description of the guy who had shouted at me.  He continued on after the guy and I continued into the park, where everyone I saw stood quietly, looking completely stunned. Crazy guy had clearly been leaving piles of his psychotic vibrato all over the park.

Empty Case

Every Thursday night, I take my pugs, Blossom and Jade, to a playgroup at a local pet shop.  The group is referred to as  Yappy Hour and my girls love it.  I don’t do the dog park thing, so this is the one opportunity a week they get to be off leash with a group of other dogs.

The play commences at 730 in the evening and lasts about an hour.  In the fall and winter months, it is already dark by 730, so I can just wear the glasses I use for all activities that don’t involve the sun.  My night vision is almost non-existent, but the dogs keep me in line and I always walk the brightest path along Sunset Blvd.  I have walked that stretch of road so many times, even the grooves in the sidewalk are etched in my memory.  I am not generally comfortable being out by myself at night, but I cling to the false sense of security that my pugs give me and brave the dark for their sake.

In the Spring and Summer, I am faced with a season specific dilemma.  The sun can stay out as late as 8pm on warmer nights and I struggle with the decision between wearing my sunglasses and having to bring a bigger bag with me or baring my eyes to their most bitter enemy.  I have to admit that I can be a bit lazy and so sometimes choose exposure to the sun over packing and carrying a bigger bag, but most of the time, I wear my sunglasses and bring the regular ones for the hour in the pet shop and the walk home.

On an evening in the middle of the summer this year, I got myself and the girls ready for Yappy Hour, packed their bag with treats and poop bags and put my regular glasses into another bag with my wallet.  When I got to the pet shop, I tucked myself into a corner to change my glasses and found myself in an unexpected bind. The case was empty.  I had left my glasses on my desk and brought an empty case. Without glasses, the world is a complete blur for me, so I started to panic, just a bit.  I was wearing my sunglasses, but they were no use to me; they are too dark to wear inside and it was getting dark outside.  How the hell was I going to get home?

I took it in stages.  First, I had to get through Yappy Hour without being able to see who was who or which dog was which.  Fortunately, I am well-known to most of the staff at the pet shop and the woman who oversees the playgroup is our dog trainer and knows about my RP. I let her know what was going on and asked her to keep a bit of an extra watch on my girls because I couldn’t see them clearly running around the play area.  But, I still had to figure out how I was going to get home.

I don’t know the other humans in Yappy Hour well enough to ask them for a ride home and I think most of them walk there anyway, but thankfully my husband works about 5 miles from home.  I hated asking him to leave work early, but this was an emergency.  I called him and of course he agreed to come and get me, but he couldn’t leave until almost 9 and the pet shop closes at 9.

At 830, Yappy Hour came to an end, I put the leashes on Blossom and Jade and I just sat there pretending to look for something in my bag while everyone else trickled out.  Then, I got up and began to wander the store, taking care not to topple over displays or crash into any pillars.  I chatted with our trainer for a bit, but she and the other staff were busy getting the shop ready for closing time.

The time passed like molasses.  845 and my husband hadn’t arrived.  Ten to nine, still not there.  Five to nine, the staff were locking the back door and there he appeared; my hero come to escort his blind wife home.  I was so grateful to see him, but also felt foolish and ashamed that I hadn’t been more prepared.

Since that night, I haven’t left the house without making sure my glasses are in the case.

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.

 

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