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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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White Canes for the Blind

Zelda, Persephone and Maud

When I started writing my blog, it was going to be a story solely about blindness, but as the years have progressed, I have discovered that the story of my blindness is the part that weaves itself into the whole, but isn’t the only thread that gives meaning. With this realization my blog has become about a life with blindness, rather than a life of blindness. Blindness makes my life more challenging, but it isn’t all of me; it often decides my fate, but it doesn’t define me.  It leads me to places I never imagined and to the rediscovery of places I had thought forever lost.  Blindness has brought friendships and community into my life in such fulfilling and sustaining ways, and it has allowed me to work through things I believed insurmountable.  But there is one battle I just can’t seem to win, the battle of Zelda. 

If you are acquainted with my blog, then you may remember Zelda, the thorn in my eye who I tried to see as a savior, but let’s just say it was a struggle to get clarity, and continues to be a struggle.  For those of you who don’t know or remember her, Zelda is my white cane.  I wrote a whole series of posts about my early days with Zelda during my O&M lessons, if you are interested in reading a bit about her background.  

So, forward almost three years, and the truth is that Zelda has rarely seen the light of day.  It’s sad really, given that she was supposed to bring some light into my hands and help guide my way over the precarious streets in this city of questionable angels, but I just can’t make peace with her, no matter how many times I trip or fall, no matter how clear it is that I need her.  

I stashed her at the bottom of a bag, which I put in another bag, which I put at the back of a high shelf in my closet,  in an attempt to forget about her, but the bruises seem to fade much more slowly as I get older, sitting on my skin as a reminder that I am not safe. My husband will periodically mention Zelda, ask where she is and if I might try her out again.  I know he worries about me.  I tell him I don’t want to be the blind wife.  I don’t want him to feel ashamed or embarrassed.  I tell him I wish I could be less broken, feel more like a partner and less like a burden.  

I do recognize that I need Zelda, so I started to think about what it is that bothers me about her.  The reasons are many and complicated, but one tangible thing is that I find her to be way too tall.  So, I decided to try out some shorter canes.  I am just over five feet tall, and although my O&M teacher was a fan of a taller cane, I never felt comfortable with Zelda’s height.  So, enter into the picture, Persephone of medium height, and Maud who is short and round, just like me.  I don’t know if the shorter canes will help me feel more comfortable, but I do know that I have to try something.  The thing is, the virus took over just when they arrived, and now we are all at home together for the foreseeable future. When the stay at home order is lifted, I just might go outside and give them a whirl.  

An Unpopular View

I was going to work on my newest venture of writing fiction (thanks to my wonderful friend and mentor, Bryan) and send out some poetry submissions this morning, but then I entered the WP world and read a few different posts, from others in the Blind/VI community, about the  #Birdbox challenge, and I felt compelled to respond with a post of my own. Continue reading “An Unpopular View”

Rust + Moth

I can’t deny it.  The day I got this particular acceptance, I cried.  I had submitted to Rust + Moth so many times and when the email came in that they had accepted my poem, I was in disbelief.  I still am.  Rust + Moth, in my opinion, is publishing some of the best contemporary poetry online and in print, and to have my work sit alongside that of so many writers I admire, is an absolute honor. The Autumn issue is incredible, full of poems that have left me breathless and in tears.   If you would like to, you can read my poem, here.

The Flip Side

Ironically, given that this is National Poetry Month, this post is not about poetry (they can’t all be), and it may not be particularly poetic.  I just finished and submitted one of the most personal poems I have ever written, and although I am thrilled that it is the month of celebrating poetry, and I am reading it voraciously, I need to take a couple of days away from writing it.

I recently had what I now call ( thanks to Katrin),  a “sucks to be blind” day.  I need them every once in a while; I got through it, I always do, and I emerged from it on the flip side of what blindness and RP have brought into my life.

I have read a lot of blog posts, written by visually impaired writers, about the benefits of being blind.  I always scoffed at them.  What could possibly be beneficial about having a disease that is causing you to lose the one thing that pretty much everyone is terrified to lose?  I thought it was total bullshit.  I was wrong.
Continue reading “The Flip Side”

That Kind of Day

I had leftover sweet potato fries for lunch.  Yeah, it’s that kind of day.  I can’t focus.  The city is bumpy and screeching outside my windows and I can smell summer approaching. I know that spring has only recently officially begun, but there is no Spring here, not really.  I fell on the sidewalk, while walking the dogs and gawking at the monstrous buildings that are popping up like weeds in Hollywood. I got a bit scraped up and bruised. Why does falling hurt more when you’re almost 49? And almost blind? I cry when I fall, not because it hurts, but because it reminds me.  I am resenting Zelda (my white cane, for those who haven’t been introduced) and RP and middle age. I should be working on poetry.  I am writing this blog post instead. Continue reading “That Kind of Day”

A Hundred Secret Senses

Toward the end of last year, I started writing a bit more about the ways in which RP affects my physical life and tried to answer some questions.  One question that I haven’t answered, posed by two of my fellow bloggers and friends, Mandi and Tom, is about how my other senses are affected as my sense of sight is swallowed up by RP.

There are differing opinions about this.  Some people say that the idea of your other senses getting stronger is a myth, others think it is pure fantasy – who doesn’t want to be DareDevil after all? I think it is an inevitability, but also something that can be cultivated over time.
Continue reading “A Hundred Secret Senses”

Contemplating the Water

My Dad lives across town and when I visit him, usually a couple of times a week, I often take the bus to UCLA and he picks me up by the medical buildings.  I was walking to meet him the other day, at the usual pick up place, not really paying attention because I am pretty familiar with the route, and bang; I had a head on collision with a bright blue light pole.  The thing is, I had Zelda with me…tucked safely inside my bag.

Zelda is my white cane and we hang out together, a lot.  I take her pretty much everywhere I go, but I have to be honest, I haven’t actually been using her.  I figured I could just use her when I need her, but this is some pretty skewed logic.  The nature of my blindness is that I don’t see what’s around me, so things like poles and curbs and cars, jump out at me from, seemingly, nowhere.   With the exception of walking at night and in dark spaces, I can’t really anticipate when I will need Z.  I understand that this means I probably need her all of the time, but that means accepting her and the truth of my vision loss.  How is it that I can live so deeply inside the reality of my blindness, and yet turn my back on it with such alacrity? Perhaps I am not really living inside the reality of my disease, but more tangled up in the confusion of it; one of the most difficult parts of my blindness is that I can still see.

I know that one day I will come to  accept and appreciate Zelda, but it has always been my way to come to things slowly.  I am more of a stare at the water for a really long time and contemplate the idea of putting a toe in, rather than a jump in with both feet, kind of person; honestly, I often get up and walk away from the water altogether, taking a road no-one else seems to see. I guess I am trying to walk away from my affliction, but the reality is that now, all roads lead back to RP.

The Leaf

I woke up this morning to find that my first ever published short story was posted last night on Sick Lit Magazine. I hadn’t written a short story since I was a kid, so this piece is way out of my comfort zone, and I am super excited it has been published.

I want to thank Kelly, the editor of SLM, for bringing me into the fold of the SLM world.

My story was written in response to the following prompt:

The theme (writing prompt, rather) is: You wake up 500 years in the future. Through your protagonist, show how and what it is like. Imagine that your protagonist has been in a coma and is waking up to see what the world is like 500 years from now. This will make ALL submissions different from one another; no two will be alike. It will show me your writing style, your outlook, your tone, and your ability to make strong, defined characters by how you interpret this writing prompt.

Here it is:  The Leaf

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.

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