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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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Dogs

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.   

Hiking Blind

A friend recently asked me how I manage hiking with limited vision.  I have actually been thinking about writing a post about this since I started hiking again. I thought it might be something other people wondered about as well.  How the hell can a blind woman go hiking?  You have to remember, I am blind but I can see.  It is probably less confusing if I refer to myself as VI (visually impaired), but I am legally blind.
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How Do I Get Out Of Here

I didn’t start this month thinking I would be writing about mental illness, but I have been so encouraged by the bravery of other writers sharing their experiences, I feel the need to share my own, with the hope that it may help someone, somehow.  My experiences are not unique, but that is the point; there are so many of us out there who suffer from depression and anxiety, and we should not feel ashamed.
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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.
Continue reading “Hiking With Dogs (A Rant)”

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.
Continue reading “The Flip Side”

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?)!!!

Encased in Glass

Welcome to “Stories from the Edge of Blindness”.  For those of you who are new readers, when I refer to Zelda (or Z), I am referring to my white cane.

Encased in Glass

My neighborhood has gone insane.  It has most definitely passed from a little nutty to totally bat crap crazy.  There isn’t a day I walk down my street or into the park near my house, that I don’t pass someone either having a full-out conversation with an inanimate object or someone only they can see, or they are throwing their rage and obscenities at me.  There is human shit on the street, mixed in with the dog shit that irresponsible dog owners don’t pick up, and corners that smell like urinals. I have to watch my dogs every minute we are out, to make sure that they don’t get into an area of grass or behind bushes where there may be human waste. Sections of sidewalks have turned into shanty towns that are populated by an array of substance abusers, down trodden and looking for safety and a sense of community; and, no matter how it may look to the outsider, these are communities.

I may sound lacking in compassion, and I can’t deny that the shit on the street grosses me out and the rage of some of the people whose paths I cross frightens me, but the communities mark a change in my neighborhood, perhaps even in the city as a whole. It is as if these communities themselves, without premeditation, are shining a light on the poverty of the city and what lies on the other side.  All over Hollywood, and other parts of Los Angeles, huge apartment buildings are being built; they are referred to as luxury apartments and charge anywhere from $3000 to $6000 a month for rent.  They are also communities; communities for the wealthy that offer gyms and swimming pools and roof decks and community rooms and super markets.  The tent communities and the luxury apartment compounds exist side by side and are built on the same premise; people looking for a place that is self-contained and feels like home.  When you strip away the filth or the luxury, human desires at their most basic, look the same.

What about the world in-between poverty and wealth?  I think it is a fence, a tight rope, a purgatory of sorts.  For me, it is one of many fences that I perch on, waiting to see which side will pull me down.  I live on fences between blindness and sight, between success and failure, and between poverty and wealth.  Are those of us who live in purgatory also a community?  Or are we in limbo, waiting to see where we end up?  Sometimes I feel like I live encased in glass, a witness to the crumbling and to the building up of my city.  Perhaps the spaces inside the glass, on the tight rope, in purgatory, are actually the best places to reside.  I ride neither high nor low.  I am comfortable and content on my fence.  Does this make me complacent?  Callous?  Naive?  Wise? Lucky?  I don’t know.

In all of the chaos and change that I witness from such a strange vantage point, the same questions come back to me.  Where does blindness fit in to the equation of the city?  Where does Zelda fit in? Does Z make me invisible or put a target on my back?  Perhaps it literally depends which side of the street we are on; which side of the fence we dip our toes over, from one moment to the next.  Or, is it most likely, that neither community can see the blind lady up on the fence, encased in glass?

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