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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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Blind Memoir

Disappearing

I haven’t been writing, but my mind is ablaze.  My life feels so heavy and my voice feels choked and uncertain.  I may, at times, wish that I could disappear, but I wake each morning and find that I am too much flesh and creaking bones and a head filled with words that long to be freed.  I will get there.  I need to believe I will.  Even the few sentences that get released are a beginning.  I am beginning again.

Lost Vision, Lost Voice

I haven’t been writing at all lately.  No blog, no poetry, no stories….just nothing.  I feel as if I don’t have much to say and when I search for my voice I find only silence and an emptiness that holds the weight of the world.  It is as if my voice is disappearing along with my vision and no matter how I grasp at the light, it flows, barbed and cruel, through my useless fingers.  I am trying to find ways to re-discover myself, but all that I see is unrecognizable and unwelcome. I am void.  I am a scar and a memory.  I am darkness.  I have no idea who I am.

Thoughts of Returning to Work

I have been “retired”, as my husband calls it, for a little over three years and on disability for almost as long.  I admit the transition to the retired life has been hard for me.  In my working life, I was a Human Resources Manager in a not for profit organization; I made pretty decent cabbage and more importantly I really enjoyed all the human interactions.  Working in HR was sort of perfect for me because I truly love how unique every person is and hearing all the stories of people’s lives day after day also spoke to the writer in me.  I liked feeling trusted and respected and all the human contact brought me out of my head and into the world.

After my RP diagnosis, I knew that I would eventually have to stop working and initially I thought of it as a way to be free from the grind; but I thought I would have more time in the working world that I actually had.  The last four years of my working life, I noticed the changes in my vision becoming more of an obstacle to almost all of my daily tasks.  For the most part I tried to ignore the signs and just plod along, but the result was a level of exhaustion I had never experienced and evenings in agony from the pain in my eyes after having spent hours at a computer under fluorescent lighting.  I went the route of making changes in my environment, but there is only so much an employer can and is willing to do and then, of course, there are the endless questions from employees.  It all became far too much to bear and I knew the time had come for me to stop working.

I thought that retirement would be a time of freedom and creativity.  I imagined myself taking advantage of all the hours of the day in which I could write and crochet and do what I wanted to do, knowing that I could take a break and  rest my eyes when I needed to.  Instead, I found myself alone at home feeling stuck and utterly useless.  I started eating out of boredom and wiling away the hours feeling as if I was being a bad girl because I wasn’t at work. I didn’t know what to do with myself.  I avoided going outside because of the heat and the sun and there was nothing to go outside for because I had nowhere to go.  I no longer had a paycheck so I couldn’t go shopping or take myself out to lunch.  I felt like a fat blind lump with no purpose and no direction.  What had happened to the fabulous writer I had created in my imagination?  Where had the enthusiasm for embracing this new phase of life gone?  Perhaps the woman and the excitement were disappearing along with my vision.

I think I stopped feeling like a person because I felt like I was being irresponsible by not working and not doing my part in my marriage and in the world.  I felt resentful at having been saddled with RP and all the limitations that come with it.  I didn’t become one of those, “I can conquer the world” people; I became a nothing, a blank slate, a blob.  Or at least that is how I felt.

I was punishing myself for not being “normal” or not being able to do “normal things” anymore.  I missed days out at the mall and the freedom of living within the hum of the world; I missed what I had grown accustomed to in all the years of my seeing and working life. I missed the old me and I was having a hard time getting excited about finding a new me.  The truth is, in the quiet of  this new phase in my life, I saw a woman without purpose or a voice and I didn’t like her very much.  I wanted to scream and let my old voice out, but there was only silence.  Somewhere along the way, I had lost my shape and my substance.  I had no idea who I was.

Now, all these years later, I am still struggling with the acceptance of retirement; still trying to get myself motivated to write and be more productive.  I still sometimes feel like I should go back to work; but then I will venture out to the market 5 blocks from my apartment and come home with burning eyes from being outside for even 20 minutes. I still feel as if I am searching for some purpose and a renewed sense of self.  The difference is that I know I am on the path to finding out who I will become in this new phase of my life and I have hope that when I find her, I will like her.

 

 

Self Promotion for a Good Cause

In an earlier post, I wrote about an event sponsored by the Foundation Fighting Blindness called Vision Walk.  I also posted, a while back, about my Etsy shop.  Well, I thought I would mesh the two and see if I could get some money for the foundation through my creative work.  So, from now until October 21, 15% of all the proceeds from my Etsy Shop, FloweringInk Plays With Yarn, will go to the Los Angeles Vision Walk. I figured it would be a great way for people to start their holiday shopping; get some cool and affordable hand-made gifts and give money to a really good cause, all in one go.

I really do believe in the work that the FFB does and I think there will be treatment for RP in my lifetime.  I, for one, think it would be pretty damn great to be able to see the world, around me literally, again.

 

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.

Between the Barbs

While reading over some of my more recent posts, I kind of wanted to tell myself to stop bitching.  I suppose that I have been in a bit of a barbed mood lately, but there are wonderful things that happen between the barbs.

On the day of my RP appointment, my husband had jury duty and so couldn’t come with me.  He was waiting to hear if he had been selected and I was waiting to hear if he would be able to pick me up after the myriad of eye tests.  After the final eye exam with Dr. Sarraf and just before my last test ( an OCT), I got a text from my husband telling me he had been released from his civic duty and would be able to pick me up.  I was so happy and so excited to tell him of the positive outcome of my appointment.  I also got a text right about the same time from my dear friend Patricia, telling me that she was thinking of me and sending her love.  I felt loved and supported and I knew I wasn’t alone in my bizarre vision journey.

When my husband came to pick me up, I got into our truck and told him the good news and he became very emotional.  I have never felt so loved and cared for in my life. He seemed even happier than I was to hear that my vision is stable. I know that no matter what happens in this life, I have him with me to share all of it and I feel like the luckiest woman in the world.  He makes me feel like I have value, sighted, blind or in between.

When I checked facebook later that evening, another of my very close friends had posted something asking how my appointment went and two of my other dearest friends wrote the most beautiful comments here on wordpress.  I knew they were thinking about me and were genuinely happy to hear that all was as good as could be expected.

I feel loved and blessed and so fortunate.

Regarding another subject, The Sun: I know I write a lot about the sun and the heat and not entirely loving my current city, but I also have to say that all the time I spend indoors is in an apartment that I love.  It is the home that I share with my husband and it is my very favorite place to be.  I also have a lot of people in my life who are super generous and always offering to pick me up or drive me places, and my husband would be there in a heartbeat if I needed him.  And, my husband also hates the sun and the heat so we are entwined in a joint mission to move to a cooler climate.

Although I sometimes feel so very alone in this slow trek to blindness, I know that I am not really alone.  All I have to do is reach out and there will be arms to comfort me.

I Feel Sweaty, Oh So Sweaty

After I surrendered my driver’s license and was forced to become reliant on the completely unreliable transit system in Los Angeles, I  discovered that my days of dressing up and actually arriving places looking and feeling nice had disappeared right along with my sight and my ability to drive a car.

Los Angeles is hot and the damn sun never seems to stop shining.  Most days, I avoid going outside while the sun is raging its assault on the dusty streets, but venturing out is sometimes necessary.  The venturing days usually require some lengthy exposure to the sun and the heat, which offend not only my eyes, but also my skin and all the beautiful artwork that covers it.

Getting ready to go out always seems to take me forever, and it isn’t because I am getting dolled up but because I am trying to swallow my dread. I don’t like the feeling of sun on my skin, so when I go out, I get covered up. I prefer to wear long sleeves to protect my tattoos and a hat to protect my eyes.  I usually procrastinate by the door because I know the minute I open it, I will begin to sweat.

By the time I reach the bottom of my stairs and head out into the street, I already feel like I can’t breathe.  The sun overtakes me in a wave of utter misery and begins to suck the moisture out of my pores.  Every part of me feels sweaty.  I know my face must be taken over by a total look of disgust and the only thought in my head is getting out of the sun and into the air-conditioned shop or bus.

I know there is no possible way I will arrive at my destination looking anything other than damp and miserable, so I don’t even try to look good.  I don’t put on makeup or wear nice clothes. I don’t bother doing anything with my hair because even my head sweats and the hair sticks to my face under the constraints of my hat. I have forgotten what it feels like to dress up and go out to have a day of shopping or a quiet lunch by myself.  I only know the sun and the heat and the sweat.

I don’t mind sweating during appropriate activities like working out or gardening, but arriving at a restaurant in a pool of sweat just doesn’t seem right to me.  I know that there are more important things than dressing up and going out to lunch, but I miss feeling good about doing it.  I miss feeling pretty.  And most of all, I miss feeling free of all that horrible sweat.

 

 

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