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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

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”

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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.

The Light Conundrum

One of the first signs of RP is night blindness. The retinas are responsible for registering and responding to light, so when you have RP and your retinal cells are dying, they can’t tell your pupils to contract or expand according to the amount of light in the room. For example, most people walk into a dark movie theater and, at first, can’t see much, but in a few minutes their eyes adjust; RP eyes don’t adjust.

My first experience with night blindness happened not long before my RP diagnosis.  I had been in a bookstore for hours, day had become night, and my car was parked on a side street a couple of blocks away.  The first part of my walk was on a busy, well lit and heavily trafficked street, but when I turned the corner onto a darkened side street, the sidewalk in front of me disappeared.  It was terrifying.  It was like walking into shadows and not being able to escape.  Eventually, I walked carefully toward the light from a street lamp about a block away, and found my car.  It can sometimes be hard to understand, but another writer with RP, (Ryan Knighton) described it perfectly; he said that he could see the lights, but not what they were meant to illuminate.

That night, the night the sidewalk disappeared, I was freaked out, but I thought I just needed new glasses; I had no idea that I had RP.  I also had more than twice the amount of healthy retinal cells than I have now, so my retinas worked a lot better and the night blindness happened in brief patches.  I got in my car that night and drove home, but I began to notice that I was having increased difficulty driving at night.  It wasn’t just the darkness, it was also the lights.

On the flip side of night blindness, there is light sensitivity. Just like the retinas don’t respond to things getting darker, they also don’t respond to things getting brighter. When most people walk outside into a super sunny day, their pupils will contract to protect their eyes from the light; RP eyes let all the light in.  For me, light sensitivity has always been a bigger problem than night blindness.  I call it light (as in, man, that is a bright light)  blindness with spikes.  That shit hurts.  You know when you get your eyes dilated and any little bit of light feels like knives in your eyes?  That is pretty much how I feel all of the time.  I can’t go outside without sunglasses and a big hat.  Occasionally, I will be rebellious and leave my hat behind, but the minute a hint of sun blasts through the top or sides of my sunglasses, I am totally blind and in pain.  And, it isn’t just sunlight, it is any bright light.  I can remember coming home from work, after a day under fluorescent lights, and collapsing on my couch, in tears, because my eyes hurt so much. I can’t read for long periods of time on any device that is back lit, because the light is too hard on my eyes; there are some days when I have just used my eyes too much and I pay for it the next day. Basically, sun and bright lights are my enemies.  Give me an overcast day full of rain, and I am a happy girl.

I have talked to other people with RP who don’t have the level of light sensitivity that I do, and those whose night blindness is much worse than mine.  I think it is important for me to stress that every case of RP is different; we experience symptoms in different ways and the rate of vision loss is different for everyone.

If you have any questions, about the RP light conundrum, or about my RP experience in general, please don’t hesitate to ask.  I actually really like having the opportunity to address specific queries, if I can.  Thank you for being a part of my story.

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