Stories From the Edge of Blindness

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


writing life

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.

Writing Exercises,Submission Opportunities and the Search for new Things to Read

It is the first of the month and new images will be up today for 2 ekphrastic challenges.

Visual Verse and Rattle Ekphrastic Challenge

There is also a Word Poem Challenge from Eclectica.  The deadline for this is Dec. 7, so a bit late notice from me, but totally fun and worth checking out.

Rattle and Eclectica both accept only poems for their challenges, but to Visual Verse, you can submit whatever form of writing you’d like.

I would love to know of any other similar challenges, if anyone has any they like.  Please feel free to leave a comment with some suggestions. And, if you submit to any of the challenges listed above, please let me know; part of the fun is reading how many different kinds of things the same image can inspire in other people.

I have been on the hunt for new poets and poems; a poet on a facebook group I belong to asked for suggestions from the group for Poets and books of Poetry that she could add to a wish list for the holidays, and I am totally stealing her idea.  If anyone has any poets or writers they really love, please let me know in a comment, so I can add them to my wish list.  It is going to be a bookish Christmas this year!

Am I too Negative?

Something has been on my mind lately and  I have been hesitant to write about it in this particular forum; I worry that it may upset some people, but I feel compelled, so I will write it and face the decision to press publish (or not) when the time comes.

I read a lot of blogs written by other blind and visually impaired people and I have noticed that most of them seem to be much more positive than mine.  Am I too negative?  Am I doing a disservice to the blind community by writing more about the struggles than the triumphs on my road to blindness?  I try to make it clear that I am not speaking for the blind community, but is it clear enough?  Am I inadvertently hurting people?  Am I casting a harmful light?  Or is it clear that what I write is simply my personal truth and nothing more?

As an artist, I have always felt that the best art comes from a place of total honesty, and whether that place is positive or negative doesn’t matter as long as it is true.  But, is this an irresponsible way of looking at things when it comes to writing about disability? I don’t want to hurt anyone or instill fear or further stereotypes. On the other hand, isn’t it my responsibility to myself as a writer, to write my story from my own perspective, no matter how uncomfortable it may be?

When I started writing about RP and going blind, I made a promise to myself that I was going to convey my story in a way that was neither overly “woe is me”, nor overly “I can overcome anything and screw this pesky blindness”.  As my story progressed, I allowed my nature to conduct my journey and my experiences, and my nature does veer toward the darker side of things.  I have never been the kind of person who races to the top of the mountain and shouts my triumph to the world; I am more the person who contemplates the mountain itself and explores its darkness.  I am in no way knocking the person who races to the top of the mountain; I actually admire that person.  I am just not wired to climb.

The way I write about my journey into blindness isn’t dictated by blindness itself, but by the nature of who I am, and that is something that was there long before I even knew I was going blind. As an artist, I am compelled to write from the center of my own truth, and that is going to make some people uncomfortable, but I am a writer, not an advocate.  I believe that art, in all it’s forms, is powerful because it inspires all kinds of feelings. I don’t set out to hurt anyone or to make anyone uncomfortable, but I do choose to write my truth and sometimes, it will be messy and hard to swallow.  My writing isn’t for everyone, but it isn’t meant to be.

Am I being irresponsible? naive?  I just don’t know.



Rejection Skin

I went through a period in my late twenties when I was writing almost prolifically and sending my work out a lot and getting published a little; it was when I acquired the skin necessary to deal with rejection.  I would get the rejection slips and immediately start editing the rejected pieces so I could mail them out again (it was all by old-fashioned mail at that time – yes, I am that old); it was like clock work.  I kept all of the rejection letters in a file and all of the lit journals info on index cards; I learned how to let the rejections roll away and I just kept writing.  Then, life got in the way and things fell apart.

For almost two decades, I put my writing and all of the aspirations that went along with it, to the side.  I grieved and drank and wept and worked a lot of different jobs; I got married and divorced and tried to figure my shit out, all the while feeling pretty empty and struggling to put pen to paper without much success.  I still called myself a writer, but I wasn’t writing.

In 2010, when I stopped working, I had the grand plan that I was going to write a book about my RP journey; I was going to write every day, become successful and be a real writer. None of it happened; my husband even gave up our second bedroom to make a writing room for me, but I avoided the room and the computer, and watched a lot of daytime TV instead.  I moved my desk into the more open and spacious front room of our apartment, thinking the space would help me feel more creative, but that didn’t work.  I started this blog, thinking that it would make the idea of writing a book less daunting, but I posted very sporadically and felt like the blog was an obligation rather than the pleasure and the solution I had hoped it would be.  Maybe I wasn’t ready to write about blindness.  Maybe I needed (a lot of) time to figure out who I was outside of the regular working world.  Maybe I was just lazy.  All I know is that I wasn’t writing and I had obliterated my grand plan.

I blogged in a very half assed way for years, not feeling like a writer, or much of a person at all really.  Then, an old friend of mine suggested that I step away from the blog for a while and get back to what I call my first love as a writer; poetry.  That’s what I did.  I let go of the pressure I had put on myself to create blog posts and I started writing poetry again.  I pulled out old poems and bits of poems that I had started years ago; I started revising and editing, which led to me writing new pieces, which eventually led to me sending my poetry to journals and magazines.  I was skeptical of my value, but I was writing.

The first round of submissions, after so many years of being dormant as a poet, was exciting; I felt productive and creative and alive and I was certain that my rejection skin would come back along with my return to the literary world.  I was lucky that in the first round of submissions, an amazing and supportive poetry editor – who now has her own lit mag (Wildflower Muse) – took the time to read my poems and even look at my very neglected blog, and accepted three of my poems for publication.  When I got the acceptance email, I cried; I felt as if my return to writing was not in vain.  But, then the rejections started coming and it turns out my rejection skin was pretty thin.  I started thinking that I had been mistaken, that my writing was crap and I was crap and what the fuck was I thinking trying this writing thing again.  And, then I got another acceptance, and more rejections and another acceptance and more rejections, and I felt my skin thickening.  I realized that the validation isn’t in getting published, but in the creating, in the writing.  I am not going to lie, it feels really good to get published, but I have to learn, again, how to get the rejections without taking them in and allowing them to define my worth as a writer.

I discovered this week that my rejection skin isn’t entirely intact.  I had been waiting 6 months to hear from a journal that actually pays poets for their work; the idea of actually getting paid for my poetry was tantalizing and I got my hopes up, and I got rejected.  I let it get to me.  I spent a day and a half feeling like I was worthless as a writer; but then I rejected those feelings.  I looked at the pieces that were rejected and saw where they need changes and got down to the work of revision.  The rejection file is much thicker than the acceptance file, and it might always be, but I will keep writing.

My return to writing poetry opened up my life as a writer in ways I never imagined; I was introduced to a community, though the internet and social media, that I had always felt separate from. I returned to writing my blog with enthusiasm and passion, and have become more involved in the blogging world.  I am getting accepted and rejected, followed and unfollowed, but it is all part of being a writer, of living a writing life.

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