Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.


August 2012

Vision Walk

This October, I will be participating in my fourth Vision Walk to help raise money for the Foundation Fighting Blindness.  The FFB hosts Vision Walks all over the United States to raise money for research to help find treatments for degenerative retinal diseases like RP.  The FFB is truly an amazing organization that is helping to give real hope to the blind and partially sighted, and I am proud to be the captain of my Vision Walk team, Susan’s RP Trail Blazers.

For more information on the Foundation Fighting Blindness, you can find a link to their website in my blogroll.  If you want to check out my Vision Walk page and maybe make a donation on my behalf, you can click on the link below. Susan’s RP Trail Blazers

Thank You!!!!!!

Caroline and the Pregnant Goat

When you are forced to rely on public transportation in Los Angeles, you inevitably end up doing quite a bit of walking.  There is no such thing as a bus stop just outside your door or round the corner; in fact, if there is a stop within ten minutes walking distance you are lucky.  There are also those days when the bus is so crowded or smells so much like feet rubbed with lunch meat, I choose the option of  getting off and walking home.  I try to time my exit at a stop where I  know I will have access to a quiet street with very little traffic.

There is a lovely maze of these little streets that make up about ten blocks between one of my regular stops and my house.  It is a beautiful walk for a cool spring day and I usually get the entire walk to myself. Usually.

On the day in question, the air was warm but carried a breeze through the myriad of trees that line the back roads of Hollywood.  I wore a big blue sun hat to protect my eyes from the sun peeking in through the leaves and a short-sleeved black cotton dress. It was warm enough to go without a sweater, so the illustrations that pepper my arms were available for all the world to see.  I figured I would be safe from comment in the middle of the afternoon on my favorite quiet route.  I was four blocks away from home and the walk had been uneventful, and then I saw her.

30 feet ahead of me sat a woman in a metal fold out chair. I slowed my pace to take a better and more gradual look.  She appeared to be in her late 60’s, but was smoking a cigarette with the determination of a long-term chain smoker, so I figured she was probably in her late 40’s or early 50’s.  Her hair was old school platinum blonde and attempting a flirty Marilyn Monroe curl, but fell flat and limp around her sad puffy face. She wore tight high-waisted jean shorts and a black tank top that struggled to cover her round belly.  Her toes, with brightly painted nails, brushed the top of white flip-flops that she had let fall to the ground beneath her feet.  She looked up at me and smiled as she exhaled the smoke from her practiced lungs.

“Do you need a  kitten?”, she asked.

“Not today thanks”.  My intention was to be polite but move along quickly.  It didn’t work out quite as planned.  The woman was in a mood to chat and I couldn’t ignore the loneliness that saturated her gaze.  She needed to tell a piece of her story and I had time to listen.

“My name’s Caroline”

“Nice to meet you Caroline”.

” I have these kittens out back; just out there in my back yard.  The mom just left them and now they need homes.  I would take care of them but I have to go into the hospital for a surgery.  I fell down the stairs.  My boyfriend gave me all this vodka to drink and I fell down the stairs and now I have to have surgery and I can’t take care of the kittens.  Are you sure you don’t need a kitten”? She barely took a breath in her desperation to tell me her story.

” I really can’t take a kitten, but I will ask around for you.  Take care of yourself”.

As Caroline said goodbye, I turned to make my way down the block and almost crashed into an opening gate.  The girl coming through the gate had bright orange hair with black tips.  She wore cat eye glasses dotted with tiny rhinestones and had a purple ring in her nose.  In her hand she clasped a black studded leash.

“Come on Molly.  Good Girl”.

At the end of the leash was a pregnant goat wearing a bright red sweater.

Nothing like a pregnant goat on a leash being walked by a girl with pumpkin colored hair to take one’s mind off of kittens.  Amazing how one adventure so quickly becomes another when you walk in L.A.

Self Deprivation

I grew up in a family that praised the value of self deprivation.  The message was that the more you sacrificed,  suffered and deprived yourself of joy and pleasure, the better and stronger you would be.  This philosophy never made much sense to me and so I have fought against it for most of my life. Joy and pleasure always felt like pretty great things and I have a hell of a stubborn streak that led me to a consistent outright refusal to push those pretty great things aside.  The problem was that, given the self deprivation family philosophy, when I pushed against their ideal I felt like a bad and unworthy person.  Not only did I not deprive myself enough, I didn’t really want to.

Although I do believe that struggles in life can make you both stronger and wiser, if you allow them to, it always seemed to me that life was hard enough without seeking out misery and wearing it like a badge of honor.  I learned pretty early on that you don’t have to go looking for loss and suffering because life will hand it over willingly.  I began to understand loss at the age of 4 when my parents got divorced and then my mom was away from home a lot while she attended night school and study groups and finally  starting her law practice.  Then, when I was 13, she was diagnosed with cancer. When I was 14, my brother barely survived a brain tumor. By the time I was 18, the cancer had taken my mom and I had broken against the crashing blows of loss that life had doled out.

I wish I could say that I saw the proverbial light then, but it took years and, oddly enough, a diagnosis of impending blindness to help me see.  I started to really think about the idea of self deprivation and not just hating my family for extolling the virtues of such a practice.  I thought about how I had already been deprived of a whole family and a healthy brother and an amazing mom and of course, my sight and all the things that fall from grasp when someone is afflicted with RP.  I recalled a lifetime of warring in my mind about the choice between being the good girl and depriving myself of the things I enjoy, like a third glass of wine or fries with my burger, or being the unworthy woman who indulges in ice cream and lazy days on the couch watching mindless movies.  I realize that all the years of self deprivation didn’t make me stronger, only sadder and angrier.  What makes me strong is being able to love and allowing myself to feel joy and pleasure and hope.

I still can’t order fries with total abandon or drink the extra glass of wine without some psychological self-flagellation, but I am getting there.  I am learning how to truly and freely enjoy the practice of enjoyment. I see the sheer stupidity in the active participation of depriving  oneself and I know that self deprivation doesn’t make me a better person, only a deprived one.

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