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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

February 2016

East of Rock and Roll Ralph’s

I was out for a walk to the shoe store, trying to have some restorative me time, but it is always a coin toss in my neighborhood.  I left my apartment, excited about a potential new pair of shoes and a frozen yogurt; I am a woman of simple pleasures.

I live about half a block from Sunset Blvd. and just a couple of blocks east on Sunset, there is a grocery store aptly named, Rock and Roll Ralph’s.  I walk to this Ralph’s almost every day, and definitely encounter some strange things between my apartment and this grocery store, but on my shoe store outing, I noticed that things get especially colorful east of Rock and Roll Ralph’s.

I crossed the street, entering the east of Rock and Roll Ralph’s zone and immediately, things got weird.  In the middle of the sidewalk stood a middle aged woman waving her hands in the air and cursing what appeared to be the bus bench in front of her.  She was about five feet tall, with sagging limbs and hair that was matted and looked sticky.  Her long denim skirt skimmed the tops of filthy bare toes and her arms were scratched and sunburned.  I approached her assuming she wouldn’t even know I was there, but she turned to me with bitter fury eyes and whispered, “no”.

I was starting to re-think my decision to leave the house, but the prospect of new shoes propelled me onward.

My next obstacle, I was ready for.  It is my local library (about which I have written in previous blog posts), and it is a common meeting ground for unsavory types.  They are mostly men, lounging on the brick walls that mark the library entrance.  Some have blankets and are fast asleep, others are looking for a fix or some cash for booze. Many of the men have bicycles parked within touching range and glare warnings at passers by to stay clear of their wheels and their territory.  I often find myself holding my breath as I walk briskly through what I call, Library Village.

Across the intersection from Library Village is the first of many Strip clubs with adjacent motels. The minute that the motel came into focus, I knew something was up.  Leaning against a wall in the driveway entrance, I couldn’t miss the tall thin man in a dirty white baseball cap, ragged navy blue sweatshirt and baggy white pants two inches too short.  His feet, adorned with pristine white shoes and black socks, were crossed casually and his frail frame bled into the wall as if he had been standing there for days. He stood in profile to the street and talked in hushed tones to two nervous men in hoodies.   I passed him, trying to seem oblivious to what we both knew was happening; he looked toward me slowly with just the hint of a threat in his eyes, when a familiar person slipped out from behind his group, smiled at me and proceeded to walk almost in step with me down Sunset Blvd.  Of course there is no such action for an RPer as looking out of the corner of your eye, so I couldn’t verify, but I knew he was a regular on a television show I watch called, “Scorpion”.  You know you are in Hollywood when you see a TV star buying drugs at a sketchy, rent by the hour motel.

The “Scorpion” guy  and I walked together until we reached the bus stop at the corner of Sunset and La Brea, where a skeleton had taken up residence and displayed all of his treasures on the ground.  He smiled down at a torn shoe with no mate, a collection of smashed Pabst Blue Ribbon cans and a chipped porcelain angel figurine.  He giggled with glee and pride and had no idea he wasn’t alone.

I crossed La Brea, toward 7’11 and more insanity.  A man in soiled grey sweatpants and matching  pull over sweatshirt, fished through an overflowing trash can.  He looked padded, as if he wore layers and layers of clothes under his sweats.  His face was burning red and he panted loudly under the heat of an 85 degree sun.  Thinning dull brown hair hung down to his shoulders and fell across his face; he seemed to be trying to hide behind the veil of hair and made no move to clear it away from his eyes.  I continued my walk, overwhelmed with how sad I suddenly felt.

I could see IHop and In and Out Burger in the distance, so I knew the shoe store wasn’t far, but I was naive to hope that my adventures were near an end.  A tiny man stood outside the closed street service window of IHop.  His blonde hair was formed into a single wig like dreadlock; he was shirtless, tanned to a crisp and wore shorts that were held together by decaying strings of fabric.  He shouted obscenities at the reflection of his hair, accusing it of hiding his soul and stealing his dancing shoes.  The shouters always scare me, so I wasn’t paying attention to the space around me; out of (seemingly, I know) nowhere, a scowling man with rage in his eyes was right in my face. He looked like he really wanted to punch me, so  I ducked out of his way and hurried across the street toward the shoe store.  I thought I heard the rough sound of boots following me, so I picked up the pace and raced to the shop’s door.  When I turned around, there was no one there.

It was one of those days when I never should have left the house.

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Buzz Kill

The first time I got really drunk, I was 13.  I stole 2 bottles of wine from my mom’s plentiful collection and ran off in the dark to hang out at the junior high school with my friend Jean.  I discovered that night that alcohol strips the skin off of fear, and I liked the feeling of shedding the weight that life had piled onto my back.  I found a way to disappear into a space where I felt nothing, where I became no-one .

As I got older and my world fell to pieces around me, I found myself turning to the bottle more often.  My main task in life was finding ways to escape from the ache of my reality.  I dove into pools of cabernet and whiskey; emerging without a face or a heart.  I craved the boozy fog and the forgetfulness.  I drank in the guise of a good time, but fun was the furthest thing from my mind.  I hated my sober self, but my drunk self felt confident and beautiful.  My drunk self was a liar, a devil on my shoulder, a basket of thorns disguised in a soothing blanket.

Now, older still, and fat and lost and going blind, I drink to forget the darkness. I drink to fill a night that follows a lonely day of grim contemplation. I drink because it is something to look forward to. I drink to erase my self loathing for just a little while. I have been hiding within the sweet promises of bottles of wine and lost sight of who I am, or who I could be without the barriers of booze and flesh and rage. I don’t want to be the buzz kill. I am terrified of what I might face if I push the curtains aside. 

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.

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