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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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disability

Spring Passes Over

Summer has cast it’s leering net over Los Angeles.  It is March and should be spring, but spring always passes us over.  Our coldest winter evening dropped to 50 degrees; hardly coat weather, but I wore my coat anyway because I knew it may be my only chance.  What am I doing here, in the home of eternal summer?  Summer is my enemy, my nemesis, the season that ignites the worst of my RP.  I check the weather forecast with dread; the numbers exhaust and flatten me.  I wish I didn’t have to go outside.

Light Phenomenon

The lights play tricks on me.  They disappear when my eyes are open and appear in kaleidoscope fashion when I shut them against my blindness. It always feels so strange to see more with my eyes closed that with them open in the dark.

There are a couple of light shows that are frequently repeated.  One is just a white light that looks like a tad pole and swims around and around in the outer fields of my vision.  The other is a cluster of bright bluish purple triangles that move around in random formation.  Am I witnessing the slow death of my retinas in light form?  Are the lights and shapes from an old visual memory?  Are my retinas trying to work with the limited cells that are left to them?  I have no idea.  I just know that the lights that turn on when I close my eyes are out of my control; just another slap in the face from RP.

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”

January

I hate January.  It is a month of sad anniversaries and debilitating despair.  I am useless in January.  I gain weight and get drunk and climb under the biggest rock I can find. This January was no exception; but now February has rushed in and I am slowly emerging.

Just as I expected, when I came out of seclusion, my demons were there to greet me. They are like bad friends that I can’t shake, no matter how deeply I keep them, or myself, buried.  They are the faces of fear and grief, and no matter how much vision I lose, they do not seem to dim or fade.  I am sick of them.  I am on a mission to get them the hell out of my life.

I have been allowing fear to control my whole life and I have the power to stop it from interfering with my journey. I have been stuck in the pit of grief over the loss of my mom at 18 and my brother just a few years ago, and I have the power to feel it without allowing it to define me.   I have been isolating myself because of my limitations and my differences, but I know it is time for me to step out into the world and live beyond my limitations.

I don’t have any grand plans or schemes of recklessness, but the motions don’t have to be huge to be impactful.  I am ready for something new.  I am ready to believe in the beauty and the power of my voice and my words and my heart. I am ready to get un-stuck.

Tunnel Vision

I hate the term “tunnel vision”.  It has always scared the crap out of me, and until recently, I really had no idea what tunnel vision felt like, even though I supposedly have it. As I walk around Hollywood, I don’t get the sensation that I am walking through a tunnel; I just walk and scan and suffer the occasional spill that brings my RP crashing down on my heart.  As I have said again and again, I don’t know what I don’t see or what to expect from my surroundings; but that is when I am walking.

During the summer, I had the opportunity to go swimming in a pool with some friends.  I loved to swim as a child, but hadn’t been in years; since before my RP diagnosis. I thought  I would never be in a pool again, because of being unable to be outside without my Jackie O’s. But, I found a pair of over sized tinted goggles that ended up protecting my eyes beautifully. I was elated to be going back into the water.

Looking at the sparkling pool, I was a bit nervous so ventured slowly into the soothing depths. I felt 9 years old again; excited, I dove down into the water and the silence and for the first time I knew what tunnel vision was.  Under water, the pool became a narrow passage through which I swam, holding my breath, until my out- stretched fingers grazed a wall. It was like sinking into a hole filled with shimmering silence; I lost my direction and my bearings. The walls disappeared and the tunnel closed in around me. The feeling was both terrifying and curious.  I dove down again and again to embrace the sensation and a new understanding of my disease. I had finally experienced tunnel vision.  I understood and I was no longer afraid.

Dining Out

Joe and I often eat out when he has a day off.  We tend to go to the same places where we know the food is good and I am familiar with the lighting and layout of the restaurant. Dining out with RP definitely has its challenges and I like to be ready for whatever comes at me out of the dark corners that occupy most of my vision.

There are often awkward moments with waiters who I don’t see coming with menus and plates of food. Occasionally I bump into someone while waking to the table, but I have Joe to help guide me and I always follow closely behind him.  I tend to avoid using the restroom so I don’t have to walk through a crowded room and risk a possible collision with a server carrying trays of food and drinks.  I know that waiters and patrons must notice that something is off with me, but they usually just stare and don’t say anything.

Last weekend, we went to Canters Deli; a historical landmark in our part of Los Angeles.  It is almost always crowded, but we have been there a lot and I made it to the table unscathed.  We had an exuberant and quite gregarious waiter who recommended I order something new, which I didn’t regret.  He was great about checking on us and refilling coffee and I thought I was going about my meal with my RP undetected, but I was wrong.

When our waiter brought the check, I asked him if I could please get the uneaten part of my meal to go.  He smiled and looked at me quizzically, then looked down toward the table.  I followed his eyes and saw that he had already placed the to-go container in front of me.  Naturally, I didn’t see him, because I only have 15% of my peripheral vision.  Usually, waiters just give me a stare and a grimace and move along, but this guy said something.  He commented on having noticed that when he brought our plates, I didn’t even flinch in acknowledgement of his being there.  I was actually grateful that he took the time to say something because it gave me the opportunity to tell him about my vision loss. It is always refreshing for me when people don’t shy away from the RP elephant in the room.  So, I gave my little spiel about RP, I made a little joke, he made a little joke (which I  like because it lightens the conversation) and wished us a good afternoon.

I know I have written about this before, but because I don’t see what I don’t see, RP often sneaks up and reminds me of the steel grip it has on my life.  I struggle a lot with feeling different and inadequate, so when someone treats me like a grown up and talks to me about what they notice in regard to what I am obviously not seeing, I find it releases me from uncomfortable and awkward feelings. The waiter at Canters got a good tip.

Road Burns

I shared a Facebook post this morning from a fellow RPer which joked about inanimate objects exhibiting hostile behavior toward humans.  I often post these kinds of things, in the spirit of camaraderie and to give some understanding, through humor, to those who don’t know what it is like to live with RP.

I know that everyone has accidents.  Everyone bumps into things, trips and even falls on occasion.  I often get the, “that happens to everyone” remark when I talk about my collisions, bumps and spills.  But, when you have RP, it isn’t the same; it happens way more often and every time it happens it is as if  the door, floor, wall and RP are all slapping you in the face.  I have been cut, bruised and even broken bones because I didn’t see something that came upon me as if out of nowhere.  Today, it was the curb.

I was walking my pugs, Blossom and Jade, to our neighborhood park, and to get to the park you have to cross a busy street.  There is a stoplight, so it isn’t usually treacherous and I have crossed at this particular intersection so many times, I thought I could make it across without a major scan of my surroundings.  So, I started to cross the street, double dog leash in hand, when my youngest (only 10 months) decided it was play time.  I rushed to separate the dogs and get out of the intersection, and before I knew it, I was doing a tango with the curb and falling like a steel brick onto the sidewalk. The irony of my earlier Facebook share was not lost on me, even as I picked myself up off the ground.

My injuries were pretty minor this time.  I got a couple of skinned and bloody knees and a solid dose of reality and shame, but I still went to the park and got to watch my girls play.   it was just another day in the arms of RP and another intimate moment with the pavement.

Clay Pumpkin

Most days, I think I navigate the world pretty well; as if I can almost feel myself in rhythm with all the sighted people who traverse the streets of Hollywood.  I can get lost in the fantasy and forget that my lens is broken and I only get part of the picture.

Yesterday I was at our local Ralphs Supermarket, picking up milk, bell peppers and Muenster.  The grocery store is always a bit of a challenge for me; people, shopping carts and displays, all an array of accidents waiting to happen.  I always opt for the hand basket rather than a shopping cart because it just isn’t safe for me to drive any vehicle, motorized or not.

I was hit by a car in the parking lot of the Ralphs in this story, so I tend to take my time and make sure I am constantly scanning my surroundings. The problem is that I often think I am doing a pretty complete scan, but in reality, I am failing to look past my own edges.  These are the times when RP pops up and slams me in the face.

I found the items on my list and managed to get around the store and through the checkout unscathed.  This doesn’t always happen, so I was feeling pretty confident and, mistakenly, sure-footed.  As my usual routine dictates, I stopped in a quiet corner to change from inside glasses to sun glasses before venturing out into the sun and heat.  Did I mention there was a massive heat wave in Los Angeles?  I walked across the threshold of sliding doors and out into the heart of sweltering Hollywood.

Given my previous run in with a dark blue Accord, I took a long pause just outside the lines of the parking lot.  The traffic was thick and the whole neighborhood seemed to be approaching the store, so I stole a breath and waited until I thought my path was clear.  I stepped forward with self-assurance and crashed into a display of clay pumpkin pots.  One of them went reeling and broke into pieces on the ground;  RP singing its cruel melody to the sound of breaking pottery. Happy fucking Halloween.

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

 

 

 

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