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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.

Category

Reading

Book Launch and Poetry Reading

I know that Tuesday will be here sooner than I can imagine, that I will be holding a copy of my book in my hands, reading poems from it’s pages, still feeling as if it is all happening to someone else.

When I was a little girl, I wanted to be a writer and/or one of Charlie’s Angels. It seemed like having my books in the shop windows and catching bad guys, would make a pretty rock and roll kind of life. The Angel thing really didn’t pan out, but the dream of being a writer and having a book published is one that I have been working toward for a lifetime. It is a dream that, at 51, I am seeing come to life. I don’t forget for one second how lucky I am, how all of the love and support and encouragement I have received has made this dream possible.

I hope that you will all be able to pop by my Book Launch/Reading, which will be my very first ever book launch and reading, so please be gentle! Here are some links:

The reading will be streamed through my Author Page on Facebook. 


You can buy a copy of my book on Amazon 


I will also be selling signed copies through my website 

My endless thanks goes out to River Dixon, a brilliant writer and publisher, a man who makes dreams come true!!!!

“Things My Mother Left Behind” Available for Pre-Order

I am sitting in my very quiet writing space, typing this in a state of simultaneous disbelief and total joy. I am thrilled beyond the sky to announce that my book, “Things My Mother Left Behind”, is available for pre-order, on Amazon. This is a life long dream come true for me, and I will be forever grateful to River Dixon; an amazing writer, publisher extraordinaire and founder of the incredible Potter’s Grove Press.


To pre-order the ebook version of “Things My Mother Left Behind” you can go here. To visit my Amazon Authors Page, you can go here. To explore the beautiful and diverse catalog from Potter’s Grove Press, you can go here.

I am so grateful for all of the love and support I have received from this incredible community over the years; it has given me a sense of courage I never thought I would feel, and helped a life long dream become reality.

A Small Detour

If you are familiar with my blog, then you know I have been posting a new series of recorded poems, starting with my publications in 2015, which came after a lengthy hiatus.  I am going to continue with the older poems, but at the suggestion of my friend Kim, I have recorded my most recent Visual Verse contribution.  And, if you haven’t had the pleasure of reading Kim’s poetry and her blog, I Tripped Over a Stone, you absolutely must!  Kim is a fiercely loving, kind and talented woman, who I am grateful to know and to learn from.

If you would like to read the original publication of this poem, with the image that inspired it, you can do so here.

How to Say Goodbye

 Promise you won’t forget me,
even when my name
has faded from your tongue.
Remember how I looked
into your eyes,
a season of storms
passed from a mother to a child,
how the strength of an ocean
helped you feel
less afraid.
I would have reached through flames,
cast thunder into a sky
filled with the stench of despair,
to save you
from the horrors of violence and greed.
Promise you won’t forget me,
even when my voice
has turned into a whisper of petals,
caught by a spark that changed
the shape of time.
Feel the imprint of my fingertips
wiping the tears from your cheeks,
and remember,
I will always love you.

2 of 3 Poems

I am super happy that Anapest Journal has accepted 3 of my poems.  The first was published yesterday and the second is out today.  It is called Sleep and Squalor.

Sidlak Poetry

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.

I just learned about Sidlak poetry from the love blogger, https://mukhamani.wordpress.com and I thought I would give it a go.  I am not sure if I am totally following the form, but this is my attempt:

She sinks down

Under the deluge

Safe in the branches of earth

The black threads of noise falling silent

I love exercises like this! Anyone who wants to, please give it a try, and post it in the comments section!!!

 

Vigor in my Stride

I have often lived on the darker side of things, turned toward sadness and despair, wrapped myself in a cloak of sorrow.  I know that this way of living and thinking is simply part of the way I am made, but as the year ends, I find myself reflecting on the light more than the darkness.

As I approach the last year of my 40’s, I am feeling the vigor in my stride.  2017 has been a year of awakening.  I have begun a new phase in my RP journey, and although it has been challenging,  I found the strength to face the changes in my identity as a blind person.  With Zelda (my white cane), I took a new path and I am heading to a place of acceptance.

I have also, finally, stepped fully into my writing shoes.  For years, I called myself a writer, but I wasn’t writing.  This year, my writing took flight; it isn’t that I spent the year writing masterpiece after masterpiece, it is that I dedicated my creative and emotional self to a writing life.  I write every day and in the act of writing I have truly become a writer.  The words have always been there, but now they have been sparked and have come to life in ways that continually surprise me.

When I started “Stories from the Edge of Blindness”, many years ago, I kept myself isolated and wrote only the occasional post.  I didn’t really participate in the blogging world, until this year.  I am immensely grateful to have found an amazing and supportive community of writers from all over the world.  I have discovered so many talented writers through the blogging community and learned so much from the stories those writers share. Being a part of such a diverse community is illuminating and inspiring; it is a true gift.

As I write this, I look around at my apartment, at all the signs of the wonderful life I have with my husband, at the pugs and the cats sleeping comfortably; I sink into the quiet spaces of the morning and I know that I am incredibly lucky.  I am not thinking about what I don’t have or what I haven’t done, but about how full my life is. Rather than longing to put 2017 behind me, or shrug it off as yet another year of failures, I approach its end feeling grateful and energized.  I am so thankful for all of the glorious, complicated, challenging and amazing things this year has given, and excited about what 2018 will bring.

First Love

“Stories from the Edge of Blindness” was my first real foray into writing non fiction.  I decided that I wanted to tell my story in a different way, but to this day I struggle with it. It isn’t the kind of writing that comes most naturally to me.

My first love, as a writer, is poetry.  It isn’t that my poetry is magnificent where my non fiction is lacking, but more that poetry is how my mind works.  It is how the words form in my brain and flow most naturally from my pen. Poetry is a love affair with language; it is life, and feelings and senses, and experiences, broken up into fragments that bleed and stick to the bones.

I fell in love with poetry in a somewhat cliché, but still powerful way.  I was in my early teens and had discovered Sylvia Plath; an icon for depressed and angst ridden teens everywhere, and an absolute genius.  I read “The Bell Jar”, and mixed in with the material in the afterward of the book, was her villanelle, “Mad Girls Love Song”.  It changed my life.  It was then, and is today, a parcel of visceral and imaginative perfection.  Like Plath herself, it is at once cloaked and raw.  “I shut my eyes and all the world drops dead” – simple, complex, powerful and perfect.  I was hooked.

I realized I had almost always seen poetry in all kinds of art.  I remember going to a Picasso exhibit with my step mother, when I was 9 or 10; I didn’t know anything about art or about Picasso, but one of the paintings in that exhibit  taught me what art is really about.  The painting is called, “Portrait of Ambroise Vollard“.  It is a cubist painting of a bearded man, done in mostly shades of gray and blue.  Although the man in the painting doesn’t really resemble my Dad in his features, my Dad has almost always had a beard and, as a 9-year-old, when I saw that painting, I saw a picture of my Dad, steeped in sadness and broken up into fragments.  I remember standing in front of the painting for a long time, unable to tear myself away from the image and the emotions it brought out in me.  I don’t remember any of the other paintings from that exhibit, but I have never forgotten that one.  When I fell in love with poetry, I realized it was, to me, in many ways what that painting was, images in fragments.

For years, all I wrote was poetry and it didn’t occur to me to even try to write anything else, until RP came into my life.  After my diagnosis, I tried to write poems about RP, but I couldn’t; perhaps it was all too new or maybe I wasn’t ready to face the reality of it.  So, at my husbands suggestion, I started this blog and threw my hat into the non fiction ring.  It was slow going; I posted sporadically and initially saw blogging as an obligation, but it has become illuminating and satisfying in ways I had never imagined.  “Stories from the Edge of Blindness” has allowed me to exercise and expand my writing voice; I think it has made me a more well-rounded and braver writer.  It also helped me get to a place where I could start writing poems about my RP journey.

I will always write and I will always write poetry, but I have realized that my life as a writer can be as diverse as I want it to be; I have even started dipping my toes into the well of short fiction.  It can be a challenge to move back and forth between genres, but it is a challenge I now welcome.

 

Writing Sample Part 4 – Surrender

It’s impossible to think about going blind without thinking about loss.  When you have a degenerative disease like RP, the loss comes in unpredictable bursts that steal pleasures and pluck freedom from disappearing fingers.  In the weeks just after my diagnosis, I thought a lot about how my life would change and what blindness would take from me; I was most afraid of losing the ability to read the printed word.

 I have always loved words; the way they can simultaneously smooth and sharpen the page. A life that leaves me unable to see the printed word is unimaginable.  I feel paralyzed by the thought of no longer seeing how the shapes of the words meld and flow.  I wonder what kind of writer I will become when the pages turn dark. Perhaps I will learn to rely solely on the musicality of language; the taste of the words in my mouth and the feel of their vibration on my lips. I am sorrowful when I think of no longer taking the words in with my eyes, but I will read voraciously until the darkness has swallowed them up.

Although the loss of the ability to read was my greatest fear after RP became part of my life, one of the most significant rites of passage in an RPer’s life is giving up driving.  I was a terrible driver, for now obvious reasons, and always felt anxious behind the wheel, but I have definitely felt the loss of freedom since I gave up my car for less convenient forms of transportation.

Because one of the first things that alerted me, and the doctors, to my RP was decreased night vision, the consequential difficulty led me to stop driving after dark immediately following my diagnosis. The combination of the darkness and the glaring lights of oncoming cars made it so I simply couldn’t see well enough to drive safely. In truth, it hadn’t been safe for years:  I had just been lucky.

I had also, in daylight hours, had several run-ins with walls, poles and curbs that seemed to jump out at me from nowhere.  This started serious contemplation of whether I should continue driving at all.  Walls and curbs only hurt my car, but what if it was a child or an animal that I didn’t see?  I couldn’t bear the responsibility of hurting someone just because I didn’t want to give up my car; so, about seven months after my diagnosis, I gave up driving altogether.

When I decided to give up driving, I chose to surrender my license and make the rite of passage official; I had no reason to hold onto it when I knew I would never drive again.  I needed to make it real.  I suppose it was my way of dealing with the loss head on, not allowing myself to live in denial about the gravity of my disease and how it was going to continue to change my life.  I was empowered because I took charge of the decision and I knew I was doing the right and responsible thing.  I felt the loss, but it was intermingled with a sense of relief.

It the first couple of months without my car, I joked about how lucky I was that I never had to be the designated driver and how I had always been a lousy driver anyway, so no big deal that I would never drive again.  True statements, but I also started to see how my disease was a burden to the those around me, and how I was going to become less and less practically useful as the years and the RP progressed.

I hated listening to my family agonize over who would drive me home after a family dinner, knowing how tired they all were.  I hated knowing that once I arrived somewhere, I was stuck until someone else was ready to leave; I had lost the freedom to come and go as I chose and because of this I became more reclusive.  I didn’t want anyone to have to take care of me.  I was determined to take care of myself.

My family never complained and I knew that they were just trying to make things easier for me, but I needed to find a way to assert my independence.  I had always had a fiercely independent nature and I wasn’t going to let RP rob me of that.  So, I learned the ins and outs of the LA transport system, which is no small feat given that it is the worst in the country.  I remember the first months of riding the bus, looking out the window at the enraged faces of the drivers in their cars, and feeling lucky that I got to spend my ride home listening to music, far away from the stresses of road rage and blaring horns.

Surrendering my license ended up saving an important part of who I am, and showed me that my determination means something.  And let’s be honest, L.A. busses are full of stories dying to be told.

Finding the Right Library

It is mid March, and while the majority of the country is digging itself out of winter, we are having a massive heat wave in Los Angeles.  Nothing is ever linear here; L.A. is a fucked up city that crouches under the disintegrating wings of angels, trying to disguise its devilish underbelly.  But, you can find your haven if you have the patience to look for it.

A couple of months ago, I started going to the library with a friend of mine.  We are both writers and were suffering from what many writers suffer from; an inability to get any writing done at home.  For convenience, we started with a library that is walking distance from my house.  The fun began at the entrance, where a number of drunk and high locals were camped out smoking cigarettes and slurring come-ons to passers-by.  I had hopes that the inside of the library would prove to be a bit more peaceful, but no such luck.  All of the tables but one, were occupied by men and women in various states of consciousness and dress, who spread their treasure troves of possessions over chairs and on the floor around them. They clearly hadn’t been versed in library etiquette  and spoke in a volume that would have been more suited to a sporting event.  Despite the noise and the smell, we decided to stay and see if we could get any writing done; we stayed a couple of hours, but quickly left upon the arrival of a group of angry teens who seemed to be amping up for a fist fight.  We escaped out into the sweltering afternoon and agreed to look for another venue.

The second library we went to was a small, older establishment that sat quietly nestled in a Hollywood neighborhood.  The entrance was adorned with clean stone work and there wasn’t a drunk in sight or a lewd greeting to be heard.  The interior was cozy, with wooden tables and chairs that dipped and swayed with age.  It seemed the perfect place for children; shelves overflowing with dreams and the walls covered in children’s paper artwork.  We were two of about five patrons that afternoon and it was quiet, so we settled in to see if the creative juices would start flowing.  We gave it an hour or so and then meandered our way out the front door, exchanging pleasantries with the librarian at the reception desk.  It was a perfectly fine place, but not the right one.

A neighbor of mine had raved to me about a new library in West Hollywood, so we decided that we would head there for our next writing excursion.  It had not been over sold.  The library is gorgeous, with two huge floors of books and floor to ceiling windows that look out onto a park and the Pacific Design Center.  It has glass panelled study rooms and solid oak tables with modern lighting and outlets for laptops.  The children’s section is nestled on the first floor, away from the rest of the library in a space designed for the chaos that comes with kids. It is Los Angeles, so there are the regulars who converge in the morning, waiting with bags full of clothes and books; they rush in as the doors open and steal away to the corners they have claimed as their own.  There is the occasional grunter and wheezer who mutters under his breath and rocks to music that pours out from his headphones, the middle-aged shoeless napper who pretends to be reading a book and sometimes a person who spreads his belongings out over the edges of his side of the desk. But, it has become our library as well and we are hopeful that great things will be written there.

 

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