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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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creativity

The Year Through RP Eyes

I debated writing an end of year post.  I have been in what feels like an endless sinking, felt myself fading so rapidly as the days drag forward, bringing me closer to 50 and what I imagined would be an overwhelming disappointment in who I have become.  But, then I stepped back, allowed myself to refocus, to see beyond the sadness that I write about so frequently, and breathe in the joy of my life, which I probably don’t write about often enough. Continue reading “The Year Through RP Eyes”

Badass Ballerina

My friend Sarah, who you may know from “On the way to the Barre”, is not only an extraordinary person and beautiful ballerina, but she is also an immensely talented writer.  Her essay, “Spider Woman” appears in the current issue of Ducts Literary Magazine, and she will also be reading at their launch event, this Saturday, in New York.

If you are in or near New York on Saturday, don’t miss Sarah reading her incredible essay!

Sidlak Poetry – Take II

A while ago, I put out a post about Sidlak Poetry.  I learned of it from a blog I read and was incredibly excited to give it a try.  In usual form, I didn’t follow the rules, or understand them.  So, this is my second attempt at Sidlak Poetry. Hopefully, I have a better grasp this time!

Sidlak poetry (sid/lak) is a structured poetry consisting of 5 lines with 3-5-7-9syllables AND A COLOR. The last line must be a COLOR that describes the whole poem or the feelings of the writer.

Continue reading “Sidlak Poetry – Take II”

Stretching my Voice

I write because it is how my brain translates life.  I write fiction because I want to stretch my voice and try new things.  I write non fiction because I want to tell my story in ways that will hopefully reach more people.  I write poetry because it is my breath; it is what flows most naturally from my pen.

For me, poetry is the ultimate expression and exercise of language. It is the bones, the blood and the heart, uncovered and untethered.  Poetry is about the extraordinary power of words and the impact of profound simplicity.  When I write poetry,  all of my emotions are electrified; my euphoria burns brighter and my frustrations cut deeper.  Poetry can give life to the magic and the strength of a single word; it can transform an image just by putting the right two words together.  I have spent weeks trying to find one word for a single poem.  Obviously, it gets me excited.

Although poetry will always be what I turn to first, as a writer, I have discovered how much strength and power exists in all forms of writing. Before “Stories from the Edge of Blindness”, I only wrote poetry, but now I see that I was limiting my voice.  I have found that exploring different kinds of writing has uncovered how nuanced and varied my writing can be.  I feel as if I have a different voice for each style of writing, a different way of expressing myself that gives me creative freedom in ways I never knew existed.  It is as if I have knocked down the walls of a room I had stitched myself into, and now I can look at myself and the world in a more comprehensive way.

I am not saying I become a completely different person when I am writing in different styles; I have and always will veer toward the darkness, but I have found that when I am writing non fiction, I can lend myself more to a kind of sarcastic wit (sometimes), and write with a voice that feels more like every day life.  I have just started writing fiction and honestly, when I do it, I feel like I am floating; I can look down at nothing and slowly add color and shape and texture.  My fiction voice is still a whisper, but I am looking forward to what I will find as it becomes louder.

I think, most importantly, I have found the breadth of the magic and power that is language.  I am discovering new writers, many of them bloggers, who are showing me what incredible things language can do.  In a single morning of reading others blog posts, I can find myself, laughing and crying, feeling still and contemplative or being completely swept away.  I know that without being a reader, I cannot be a writer; I am grateful to all of the writers that transform my life every day and inspire me to delve more deeply into my own craft.

Community and Liebster

I have always liked my alone time.  I have only a few friends, but they are close friends.  I don’t like big crowds or loud places, and I would rather be at home than anywhere else.  I have taken numerous personality type assessments and every single time, the results tell me that I am an off the charts introvert, but I still crave the feelings that come with being part of a community.

When I started “Stories from the Edge of Blindness”, part of my motive was to find a place in the blind community; I ended up finding that and so much more.  Recently, I have really allowed myself to become involved both with my own blog and with others.  I started reading other blogs avidly and I have found some amazing writers and people through the blogging community.  I have found this community to be supportive and creative and intelligent and amazing.  I am grateful to be a part of the incredible community that blogging and bloggers have created.

Recently, I was selected by two wonderful bloggers; Ayotunde who writes EINCENDIUM,  and Glen who writes, Well Eye Never, to participate in the Liebster Award.  I am very grateful to both of them for recognizing me.

Liebster is originally a German word meaning many things, such as “good” or “kind”, but also “valued”. The award is a way to draw attention to blogs under 200 followers, and is given by bloggers to other bloggers. As a nominee, I’m to pass this on to eleven new bloggers. But first I’m going to answer the eleven questions given by Ayo and Glen.

From Ayo:

 1)What’s your weirdest schooling experience?

My weirdest and perhaps most educational experience in school was the two weeks I spent in the Colorado Rockies with a group of fellow students I had never met before that sojourn.  It was quite the introduction to a new school.
2) Where do you intend to be in about ten years time? With who? Doing what?

With my husband, writing and living in a quiet place.
3) If you could go back in time, what will you change?

I would definitely focus more on school. I was a terrible student and that has made life more challenging in ways that could have been avoided.
4) What negativity have you been finding it so hard to get over, and why?

I am constantly plagued by self- doubt.  I have always felt that I am not good enough, that I don’t have the right to a voice or to even being alive.  I don’t know where these feelings manifested, but I am constantly working to dissolve them.
5) What inspires you the most to write?

The struggles and the darkness inspire me most in my writing.
6) Can you in three lines tell what your perfect picture of love will look like?

In the perfect picture of love, there is laughter, respect and comfort.
7) What movie have you watched, that you benefited so much, you can forget?

A beautiful Japanese film called “Afterlife” It is cinematic poetry.
8) What’s your deepest point?

I feel others pain very profoundly.
9) Have you ever been depressed? How do you get over it?

I have lived with depression since I was a child and the older I get, the better I get at dealing with it; I get help when I need it and I don’t hide from the reality of having depression. I explore my feelings, I talk about them and I face my demons, mostly through writing.
10) If you were to describe yourself with three words, what would it be?

Writer.  Loving.  Complicated
11) If you could do anything for one day, what would you do?

I would go to Hogwarts.

 

From Glen:

  1. What is your favourite food?

Indian food, absolutely!

  1. If you could set a world record for something, what would you want it to be?

I think it would be the high jump; I would love to be able to fly in the air the way those jumpers do.

  1. What is your favourite sport?

I am not much of a sports person, but if I had to choose a favorite, it would probably be gymnastics; it’s that flying in the air thing again.

  1. If you could invite 3 celebrities over for a dinner party, who would it be and why?

Judy Dench; she is an immense talent and there is wisdom in her eyes that I just want to be around for a little while.

Sylvia Plath; she is the writer who made me fall in love with poetry.

Amy Tan; well, who doesn’t want an evening of the kind of genius and magic that is Amy Tan?

  1. Who would play you in a film of your life?

I think probably Glen Close, but I don’t know why.

  1. Do you cook/bake?

I bake bread; I love the kneading part because it is so cathartic.

  1. What is your favourite book?

This is impossible to answer.  There are so many books that have impacted my life.  A few:  Harry Potter (all 7), The Joy Luck Club, Asleep, The Woman in the Dunes and so many more.

  1. What is your favourite season of the year?

Autumn; it is a season of beginnings.

  1. What advice would you give to new bloggers?

Read other blogs, and I mean really read them.  Find writers and subjects that inspire you and resonate with you. You will learn so much and make friends and your life will be enriched.

  1. What’s the strangest thing that’s happened to you this year?

Life in my neighborhood is pretty strange every day, so I can’t really pin one thing down.

  1. Are there any quotes or mottos that you live by?

I wouldn’t say I live by it, but I love it:

Words to me were magic. You could say a word and it could conjure up all kinds of images or feelings or a chilly sensation or whatever. It was amazing to me that words had this power. Amy Tan

This is the part where I am supposed to nominate 11 other bloggers who have less than 200 followers.  I have no idea how to tell if someone has 100 or 1000 followers, so I nominate anyone reading this – who has less than 200 followers – for the Leibster Award, and invite you to please put a link to your blog and a synopsis in the comments section.  I look forward to reading all the responses and learning more about all of the amazing writers whose blogs I read.

My Leibster Questions:

  1. What inspired you to start blogging?
  2. Who are your 3 favorite authors?
  3. What are you most passionate about in life?
  4. Are you an only child, oldest, middle, youngest?
  5. Where is the most beautiful place you have been, real or imaginary?
  6. If you could visit any country, which would it be?
  7. Are you an introvert or an extrovert?
  8. Do you have pets? What kind?
  9. What languages do you speak?
  10. What is the most recent dream you remember?
  11. What is one of your favorite words?

 

 

Leisure

RP has thrown me into a life of leisure.  It sounds decadent,  but has felt confusing and burdensome.  It has been a struggle for me to brush off the restraints of socialization and embrace the time that RP has afforded me.  I had such grand ideas when I first stopped working in the traditional world; I was going to immerse myself in writing and finish my memoir, but instead I retreated and built a cocoon of shame and self loathing.  I spent years trying to figure out how to be a blind person and forgot how to be anything else.

Although my days of not working can be exhausting because of the need for constant visual vigilance every time I leave the house, I get to choose when and where I go.  I have the freedom to decide what my days look like and what path my life will follow, unencumbered by the 9 to 5.  in the past year, my focus and my attitude have shifted.  I have become a little less afraid and started to think about my life and myself in a more complete way.  I am not just the fat girl who is going blind.  I am a writer and a wife and a friend and a mom to 4 pets.  I am learning again to be person beyond the boundaries of my disease and feeling incredibly grateful for my life of leisure.

Spill

The doctors tell me my vision is stable, but I feel blinder to the world around me.  I am tripping more, spilling out onto sidewalks and park lawns.  I am searching the house more often for my husband and my pugs, who are usually very near me.  I think that when the doctors say my vision is stable, they mean that the RP isn’t invading my central vision.  Of course I am incredibly grateful that my central vision remains unsullied by the tentacles of RP, but I still feel like a freak and a failure and a burden.  I try not to dwell on what I can’t do, but Living in Los Angeles makes that difficult; the car thing and the sun thing and the social thing are all dictated by the blind thing.

Last week, I fell twice; once on the grass when I tripped over a friends dog who I didn’t see and once in a driveway when I tripped over one of my dogs who I didn’t see.  The scrapes and bruises are left as reminders of the way that RP, literally, pushes me to the ground.  I find that I am dealing less emotionally well when these accidents occur.  I am no longer good at brushing things off, but have to take the time to collect myself and turn off the berating tapes that tell me I am a loser.

I feel more nervous.  I am behaving more cautiously.  And yet, I am more bruised than ever. This must mean that my peripheral vision is still deteriorating; or at least that is what my mind is telling me.

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”

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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