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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

October 2017

Am I too Negative?

Something has been on my mind lately and  I have been hesitant to write about it in this particular forum; I worry that it may upset some people, but I feel compelled, so I will write it and face the decision to press publish (or not) when the time comes.

I read a lot of blogs written by other blind and visually impaired people and I have noticed that most of them seem to be much more positive than mine.  Am I too negative?  Am I doing a disservice to the blind community by writing more about the struggles than the triumphs on my road to blindness?  I try to make it clear that I am not speaking for the blind community, but is it clear enough?  Am I inadvertently hurting people?  Am I casting a harmful light?  Or is it clear that what I write is simply my personal truth and nothing more?

As an artist, I have always felt that the best art comes from a place of total honesty, and whether that place is positive or negative doesn’t matter as long as it is true.  But, is this an irresponsible way of looking at things when it comes to writing about disability? I don’t want to hurt anyone or instill fear or further stereotypes. On the other hand, isn’t it my responsibility to myself as a writer, to write my story from my own perspective, no matter how uncomfortable it may be?

When I started writing about RP and going blind, I made a promise to myself that I was going to convey my story in a way that was neither overly “woe is me”, nor overly “I can overcome anything and screw this pesky blindness”.  As my story progressed, I allowed my nature to conduct my journey and my experiences, and my nature does veer toward the darker side of things.  I have never been the kind of person who races to the top of the mountain and shouts my triumph to the world; I am more the person who contemplates the mountain itself and explores its darkness.  I am in no way knocking the person who races to the top of the mountain; I actually admire that person.  I am just not wired to climb.

The way I write about my journey into blindness isn’t dictated by blindness itself, but by the nature of who I am, and that is something that was there long before I even knew I was going blind. As an artist, I am compelled to write from the center of my own truth, and that is going to make some people uncomfortable, but I am a writer, not an advocate.  I believe that art, in all it’s forms, is powerful because it inspires all kinds of feelings. I don’t set out to hurt anyone or to make anyone uncomfortable, but I do choose to write my truth and sometimes, it will be messy and hard to swallow.  My writing isn’t for everyone, but it isn’t meant to be.

Am I being irresponsible? naive?  I just don’t know.

 

 

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I Just Wanted to buy Milk

We needed milk, desperately (my husband is an avid tea drinker) and I had a prescription ready at the pharmacy, so even though it was hot, I had to venture out to the grocery store.  I am not a fan of the heat and I admit, I felt a bit cranky; I was not in the mood to deal with the Hollywood locals.

I walked with heavy feet down our 3 flights of stairs, and immediately, as I turned the corner out of our driveway, the heat and the city crept up my neck.  50 feet north of our driveway, an abandoned leatherette lounge chair had been left to melt into the middle of the sidewalk.  It was torn and peppered with the remnants of old duct tape, and it was occupied.  A man with wildly matted hair that stuck out in haphazard tufts all around his head, was reclining in the chair, looking in my direction but clearly not at me. He wore a long black coat that matched the chair and shoes that had no laces. His hands were caked with dirt and he picked his teeth and muttered with excitement as he peed on the chair, clearly marking it as his territory. I wasn’t one to argue, so I crossed the street and continued on my way.

I got about 3 feet up the sidewalk, and noticed 2 of my neighbors sitting on a crumbling white brick wall, eating ground meat off of paper plates.  I didn’t want to be rude, so I stopped to say hello; apparently one of them had surprised the other with spaghetti, but had forgotten the sauce and the noodles.  They stared at me with sad expressions, holding their plates precariously with drug addled hands. I said I was sorry for their predicament and moved quickly along.

As I approached Sunset Blvd., a man turned the corner onto my street, pushing a large cart; in the cart was a rusted stock pot and a long box that had once held a portable electric keyboard.  When the man saw me, a look of absolute terror filled his eyes.  He let go of the cart and ran out into the street where he started unbuttoning his pants and screaming at me, “Go Go, Hurry, Goooo”.  The cart was rolling toward me and the man was in a complete panic, so I ran past the cart and around the corner to put him at ease.  When I looked back, he had reunited with the cart and was pushing it happily down the street.

The first block of Sunset looked clear, but I noticed some extremely exaggerated motion on the second block. It looked like a young girl, skipping with abandon down the street.  As she got closer, I realized it was a middle-aged man dressed in gold satin shorts ( very short shorts), and a tight white tank top with the #69 plastered across the front in red. His platinum blonde wig was teased up and his feet were adorned in furry socks and crisp white keds that looked as if they had just come out of the box.  He skipped toward me, giggling and shaking a pair of cheerleaders pom pom’s with pure joy. He stopped, smiled, and with gleaming teeth, did a quick cheer,” Yum Yum Yum, Bitch, Yum Yum Yum, Go Tiger”, and tossed his blonde hair piece onto a bus bench before dashing away down Sunset.

I made it to the market without any further interruptions and headed straight to the pharmacy.  Our pharmacy is tucked into a little nook at the back of the store and right outside is a machine that will measure your blood pressure and pulse and tell you how much you weigh.  I call it the blood pressure chair and it is often being used by older people waiting for prescriptions or just having a rest before tackling the produce section.  Today, there was a man in the chair who looked out of sorts. His shoes were torn and carried the hues of living rough, and he was wearing a filthy tattered sweater on a 100 degree day.  His face was red and his eyes looked nervous and desperate.  I found it suspect that he was hanging out by the pharmacy, but I went into the pick up area anyway; 10 seconds later, the man was standing behind me.  I bolted out the exit.

I decided my prescription and the milk could wait; clearly, a heat wave so close to Halloween was bringing the bizarre into a frenzy in Hollywood, and I had reached my limit for the day.

 

 

 

Revelations

 

*A note to new readers:  Welcome to Stories from the Edge of Blindness and thank you for reading!  I just wanted to let you know that when I refer to Zelda (or Z), I am not talking about a pet or a child, but about my white cane.

Sometimes, I am walking down the street, or more often, to the kitchen, and I have these revelations about my relationship to RP and Zelda and the whole blind thing; I suppose I am thinking about it all the time, but mostly with a great deal of confusion about why I am struggling so much with this particular part of my RP story. However, occasionally, these nuggets of realization will pop into my head and lead me to a little more clarity.

Yesterday, my Dad was driving me to the bus and he asked, basically, how much the cane was influencing my life and what benefit, if any, it provides.  All I could tell him was that I was still feeling unsure and having a lot of internal struggle, asking myself the same questions he had asked me.  I told him that Zelda definitely helps reduce my anxiety in crowded places, which is true, but I think I probably sounded more like I was trying to convince myself,  rather than believing it.  I told him that I was glad I have her for situations when I feel anxious or I know my remaining vision will be compromised: for example, if I forget to wear a hat on a day that starts out cloudy and becomes sunny; even with my huge sunglasses, if any sun pops through the gaps at the top or to the sides, I am completely blind and Z would probably come in handy in that circumstance.  My Dad said he is also glad that I have her.

I forgot a hat yesterday because Joe and I left early in the morning, before the sun had fully shown its face, and we were rushed to get the dogs to the vet, so when my Dad dropped me off, I thought I may have to use Z to get safely to the actual bus stop.  I didn’t end up using her, but I thought about it…….

Anyway, I digress. Back to my oh so profound (probably not) revelation.

I feel that if I choose to avail of the assistance of Zelda then I am choosing to be blind.  On a logical level, I know this is ridiculous.  RP isn’t my choice, blindness isn’t my choice, and I am already legally blind, but emotionally I have drawn a line that I can’t manage to cross.  I am fighting the reality of my disease with iron clad resolve, and I am pretty damn stubborn when it comes to fighting off reality. My petulant self says that I don’t want to be blind and I don’t want this stupid fucking disease, so I will deny it for as long as I possibly can.  The problem is, RP has no respect for lines, no matter how solid they appear to be.

RP isn’t the same from day-to-day; it can change in a second due to lighting or the slightest turn of the head.  Something can be right in front of me one minute and gone the next; this is why I need Zelda.  But, I have had years of practice dealing with the moment to moment changes; I am really good at hiding my blindness, until I’m not and I’m on the ground, bruised and broken and hating myself for having RP.

I imagine everyone must be tired of me and my writing about this struggle with Zelda; I am a bit sick of it myself, but it is a reality of RP that I think is important to write about honestly.  I am stuck and afraid and trying to navigate my way through this chapter in the best ways I can.  I think these little revelatory nuggets help me face the realities and complexities of my disease and bring me closer to accepting Zelda as a part of my independence rather than a co-conspirator to what keeps me captive.

 

Reluctant Side Kick

*To new readers: When I refer to Zelda (or Z), I am writing about my white cane.  Thank you for reading “Stories from the Edge of Blindness”

Reluctant Side Kick

Zelda and I have reconciled, again.  I suppose we are together for better or worse, but I am still her somewhat reluctant side kick, reluctant to give in and give over to her, to let her lead the way, but, my self guidance system is seriously faulty.

Joe and I were grocery shopping the other day – before I rescued Z from beneath a mound of coats and hats and bags, on the hat rack and I collided with a shopping cart that someone had left in the middle of an exit isle.  It wasn’t a bad collision; I was just left with some bruises on my legs, but when it happened, I looked up at Joe and said,”I guess I could have used Zelda today”.  He just smiled and nodded and we left the store.

As a result of this particular collision, I had to admit that I have been treating Joe unfairly.  Whenever we go out together, I depend on him to keep me from collisions and falls and the always possible rage of strangers, but what about Zelda?  If I had Z with me, Joe could shop and walk and roam to his heart’s content without having to worry about me the whole time.  I have been so selfish.  I have been telling myself that using or not using Zelda only affects me, and that simply isn’t true.

So, I have put Zelda back on a prominent hook, next to my purse and sweater, so I will be reminded to always bring her with me. I don’t want to need her, but sometimes I know I will, and when I no longer have the amount of useable vision I have now, I will be grateful that she and I have become well acquainted.

Short Essay in The Furious Gazelle

I am super excited that one of my short essays came out in The Furious Gazelle today.  They have accepted a second one that will appear in January of next year!!!!

Rejection Skin

I went through a period in my late twenties when I was writing almost prolifically and sending my work out a lot and getting published a little; it was when I acquired the skin necessary to deal with rejection.  I would get the rejection slips and immediately start editing the rejected pieces so I could mail them out again (it was all by old-fashioned mail at that time – yes, I am that old); it was like clock work.  I kept all of the rejection letters in a file and all of the lit journals info on index cards; I learned how to let the rejections roll away and I just kept writing.  Then, life got in the way and things fell apart.

For almost two decades, I put my writing and all of the aspirations that went along with it, to the side.  I grieved and drank and wept and worked a lot of different jobs; I got married and divorced and tried to figure my shit out, all the while feeling pretty empty and struggling to put pen to paper without much success.  I still called myself a writer, but I wasn’t writing.

In 2010, when I stopped working, I had the grand plan that I was going to write a book about my RP journey; I was going to write every day, become successful and be a real writer. None of it happened; my husband even gave up our second bedroom to make a writing room for me, but I avoided the room and the computer, and watched a lot of daytime TV instead.  I moved my desk into the more open and spacious front room of our apartment, thinking the space would help me feel more creative, but that didn’t work.  I started this blog, thinking that it would make the idea of writing a book less daunting, but I posted very sporadically and felt like the blog was an obligation rather than the pleasure and the solution I had hoped it would be.  Maybe I wasn’t ready to write about blindness.  Maybe I needed (a lot of) time to figure out who I was outside of the regular working world.  Maybe I was just lazy.  All I know is that I wasn’t writing and I had obliterated my grand plan.

I blogged in a very half assed way for years, not feeling like a writer, or much of a person at all really.  Then, an old friend of mine suggested that I step away from the blog for a while and get back to what I call my first love as a writer; poetry.  That’s what I did.  I let go of the pressure I had put on myself to create blog posts and I started writing poetry again.  I pulled out old poems and bits of poems that I had started years ago; I started revising and editing, which led to me writing new pieces, which eventually led to me sending my poetry to journals and magazines.  I was skeptical of my value, but I was writing.

The first round of submissions, after so many years of being dormant as a poet, was exciting; I felt productive and creative and alive and I was certain that my rejection skin would come back along with my return to the literary world.  I was lucky that in the first round of submissions, an amazing and supportive poetry editor – who now has her own lit mag (Wildflower Muse) – took the time to read my poems and even look at my very neglected blog, and accepted three of my poems for publication.  When I got the acceptance email, I cried; I felt as if my return to writing was not in vain.  But, then the rejections started coming and it turns out my rejection skin was pretty thin.  I started thinking that I had been mistaken, that my writing was crap and I was crap and what the fuck was I thinking trying this writing thing again.  And, then I got another acceptance, and more rejections and another acceptance and more rejections, and I felt my skin thickening.  I realized that the validation isn’t in getting published, but in the creating, in the writing.  I am not going to lie, it feels really good to get published, but I have to learn, again, how to get the rejections without taking them in and allowing them to define my worth as a writer.

I discovered this week that my rejection skin isn’t entirely intact.  I had been waiting 6 months to hear from a journal that actually pays poets for their work; the idea of actually getting paid for my poetry was tantalizing and I got my hopes up, and I got rejected.  I let it get to me.  I spent a day and a half feeling like I was worthless as a writer; but then I rejected those feelings.  I looked at the pieces that were rejected and saw where they need changes and got down to the work of revision.  The rejection file is much thicker than the acceptance file, and it might always be, but I will keep writing.

My return to writing poetry opened up my life as a writer in ways I never imagined; I was introduced to a community, though the internet and social media, that I had always felt separate from. I returned to writing my blog with enthusiasm and passion, and have become more involved in the blogging world.  I am getting accepted and rejected, followed and unfollowed, but it is all part of being a writer, of living a writing life.

Mortal

My poem, “Mortal”, was published in WildFlower Muse in March of 2016.  I am posting it today in honor of the anniversary of my brother’s death.

4 Years

Today is the 4th anniversary of my brother’s death.  He has been on my mind more than usual this week and I woke up this morning feeling like it must be impossible that he has been gone so long. I can’t believe that I am now the age he was when he died. Where have all the days gone? I miss him so much. I really could have used my big brother’s advice with the whole Zelda thing (Zelda is my white cane).

John(that’s my brother) was sick on and off from the age of 18 until his death at age 48.  He knew more than most what it meant to feel different and defeated, but he had a determination that I have rarely seen.  We weren’t close as kids; I was the one who swooped in and usurped his title of youngest child, and he had absolutely no use for me, but in the last years of his life we had truly become friends.

We both loved Harry Potter and saw almost all of the movies together.  While waiting in line to see “The Half Blood Prince”, a group in front of us kept growing; people coming into the line gradually to join the two girls who had been there from the beginning. John and I had been there for about 4 hours ( we were dedicated), and John was not happy about all the people arriving late and essentially cutting in line.  When the line finally started moving, the now pretty big group ahead of us had to gather their blankets and backpacks and purses, so John grabbed my hand and raced up to get ahead of them in line.  One of the girls had the nerve to call us out on it, so John turned around and told her that she had joined the line late and we had been there the whole time, so tough shit. She replied by saying that everyone one was doing it, and John said,” If everyone jumped off a cliff, would you do that?”.  It was a wonderfully old man kind of thing to say and I loved him for it.  I loved watching him stand up for us.  I wish he was here so we could reminisce about that day.

Maybe two or three years after my RP diagnosis, I was feeling sorry for myself, lonely and misunderstood, and I made a comment about how no one in my family could possibly relate to what it felt like or what I was going through.  Later that day, John came to sit with me at the dining room table and told me I had hurt his feelings by what I had said, because he understood.  He understood what is was like to feel loss, to feel afraid and different and alone.  I knew in that moment that neither of us were alone.  I learned in that moment what it meant to be brave. I saw in that moment how much John had been teaching me all along, about strength and kindness and honesty.

I am lucky that John was my big brother and so grateful that we became close and that I really got to know him, but I wish he was here so I could tell him how amazing he was and how much I miss him.

 

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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