Short Essay in The Furious Gazelle

Posted in Blindness, creativity, Degenerative Retinal Diseases, Disability, Life in Los Angeles, Memoir, Retinitis Pigmentosa, Vision Loss, Writing with tags , , , , , , , , on October 20, 2017 by floweringink

I am super excited that one of my short essays came out in The Furious Gazelle today.  They have accepted a second one that will appear in January of next year!!!!


Rejection Skin

Posted in Blindness, creativity, Degenerative Retinal Diseases, Disability, Memoir, Poetry, Retinitis Pigmentosa, Writing with tags , , , , , , , , , , , on October 18, 2017 by floweringink

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.


Posted in Family, Loss, Poetry, Retinitis Pigmentosa, Serious Illness, Siblings, Writing with tags , , , , , , , , , , on October 14, 2017 by floweringink

My poem, “Mortal”, was published in WildFlower Muse in March of 2016.  I am posting it today in honor of the anniversary of my brother’s death.

4 Years

Posted in Blindness, Degenerative Retinal Diseases, Disability, Family, Loss, Memoir, Retinitis Pigmentosa, Serious Illness, Siblings, Vision Loss, White Canes for the Blind, Writing with tags , , , , , , , , , on October 14, 2017 by floweringink

Today is the 4th anniversary of my brother’s death.  He has been on my mind more than usual this week and I woke up this morning feeling like it must be impossible that he has been gone so long. I can’t believe that I am now the age he was when he died. Where have all the days gone? I miss him so much. I really could have used my big brother’s advice with the whole Zelda thing (Zelda is my white cane).

John(that’s my brother) was sick on and off from the age of 18 until his death at age 48.  He knew more than most what it meant to feel different and defeated, but he had a determination that I have rarely seen.  We weren’t close as kids; I was the one who swooped in and usurped his title of youngest child, and he had absolutely no use for me, but in the last years of his life we had truly become friends.

We both loved Harry Potter and saw almost all of the movies together.  While waiting in line to see “The Half Blood Prince”, a group in front of us kept growing; people coming into the line gradually to join the two girls who had been there from the beginning. John and I had been there for about 4 hours ( we were dedicated), and John was not happy about all the people arriving late and essentially cutting in line.  When the line finally started moving, the now pretty big group ahead of us had to gather their blankets and backpacks and purses, so John grabbed my hand and raced up to get ahead of them in line.  One of the girls had the nerve to call us out on it, so John turned around and told her that she had joined the line late and we had been there the whole time, so tough shit. She replied by saying that everyone one was doing it, and John said,” If everyone jumped off a cliff, would you do that?”.  It was a wonderfully old man kind of thing to say and I loved him for it.  I loved watching him stand up for us.  I wish he was here so we could reminisce about that day.

Maybe two or three years after my RP diagnosis, I was feeling sorry for myself, lonely and misunderstood, and I made a comment about how no one in my family could possibly relate to what it felt like or what I was going through.  Later that day, John came to sit with me at the dining room table and told me I had hurt his feelings by what I had said, because he understood.  He understood what is was like to feel loss, to feel afraid and different and alone.  I knew in that moment that neither of us were alone.  I learned in that moment what it meant to be brave. I saw in that moment how much John had been teaching me all along, about strength and kindness and honesty.

I am lucky that John was my big brother and so grateful that we became close and that I really got to know him, but I wish he was here so I could tell him how amazing he was and how much I miss him.


Encased in Glass

Posted in Blindness, Degenerative Retinal Diseases, Disability, Dogs, Fear, Life in Los Angeles, Memoir, Retinitis Pigmentosa, Vision Loss, White Canes for the Blind, Writing with tags , , , , , , , , on October 12, 2017 by floweringink

Welcome to “Stories from the Edge of Blindness”.  For those of you who are new readers, when I refer to Zelda (or Z), I am referring to my white cane.

Encased in Glass

My neighborhood has gone insane.  It has most definitely passed from a little nutty to totally bat crap crazy.  There isn’t a day I walk down my street or into the park near my house, that I don’t pass someone either having a full-out conversation with an inanimate object or someone only they can see, or they are throwing their rage and obscenities at me.  There is human shit on the street, mixed in with the dog shit that irresponsible dog owners don’t pick up, and corners that smell like urinals. I have to watch my dogs every minute we are out, to make sure that they don’t get into an area of grass or behind bushes where there may be human waste. Sections of sidewalks have turned into shanty towns that are populated by an array of substance abusers, down trodden and looking for safety and a sense of community; and, no matter how it may look to the outsider, these are communities.

I may sound lacking in compassion, and I can’t deny that the shit on the street grosses me out and the rage of some of the people whose paths I cross frightens me, but the communities mark a change in my neighborhood, perhaps even in the city as a whole. It is as if these communities themselves, without premeditation, are shining a light on the poverty of the city and what lies on the other side.  All over Hollywood, and other parts of Los Angeles, huge apartment buildings are being built; they are referred to as luxury apartments and charge anywhere from $3000 to $6000 a month for rent.  They are also communities; communities for the wealthy that offer gyms and swimming pools and roof decks and community rooms and super markets.  The tent communities and the luxury apartment compounds exist side by side and are built on the same premise; people looking for a place that is self-contained and feels like home.  When you strip away the filth or the luxury, human desires at their most basic, look the same.

What about the world in-between poverty and wealth?  I think it is a fence, a tight rope, a purgatory of sorts.  For me, it is one of many fences that I perch on, waiting to see which side will pull me down.  I live on fences between blindness and sight, between success and failure, and between poverty and wealth.  Are those of us who live in purgatory also a community?  Or are we in limbo, waiting to see where we end up?  Sometimes I feel like I live encased in glass, a witness to the crumbling and to the building up of my city.  Perhaps the spaces inside the glass, on the tight rope, in purgatory, are actually the best places to reside.  I ride neither high nor low.  I am comfortable and content on my fence.  Does this make me complacent?  Callous?  Naive?  Wise? Lucky?  I don’t know.

In all of the chaos and change that I witness from such a strange vantage point, the same questions come back to me.  Where does blindness fit in to the equation of the city?  Where does Zelda fit in? Does Z make me invisible or put a target on my back?  Perhaps it literally depends which side of the street we are on; which side of the fence we dip our toes over, from one moment to the next.  Or, is it most likely, that neither community can see the blind lady up on the fence, encased in glass?

Visual Verse

Posted in creativity, Poetry, Retinitis Pigmentosa, Writing with tags , , , , , , on October 6, 2017 by floweringink

So, my contribution to this month’s Visual Verse is up and can be read on page 18.

It isn’t my best work, but I want to keep sharing this site because I think it is a really fun, useful and potentially illuminating exercise for the creative self. I love the time aspect because it doesn’t allow you to over analyze; you just honor whatever comes up. They do it every month and I highly recommend giving it a shot!

Hands off the Wheel

Posted in Blindness, Degenerative Retinal Diseases, Disability, Loss, Memoir, Retinitis Pigmentosa, Vision Loss, White Canes for the Blind with tags , , , , , , , , on October 6, 2017 by floweringink

A good friend of mine made a great recommendation regarding my blog; she pointed out that people new to my blog may not know that when I refer to Zelda(or Z), I am taking about my white cane. So, in future blog posts, if Zelda is part of the story,  I will make sure to add a note explaining who (what) she is.  Thank you to my friend – you know who you are and I love you!

So, yeah, Zelda is going to be part of this particular post.  You may be thinking, ” oh god, not that bitch Zelda again”, but, unfortunately, Z isn’t going anywhere, no matter how hard I try to get rid of her.

I have been treating Zelda deplorably.  I have ignored her, shunned her and concealed her on a crowded hook.  If I don’t see her, I don’t have to think about her; and if I don’t have to think about her, I can pretend that I can see just like most other people. I am really good at the avoiding and pretending thing.

When I was learning to drive – the second time; a few years after two accidents and a ticket for failing to yield to a pedestrian in a crosswalk (no one was injured) – my Dad took me to an abandoned parking lot to test a theory.  He asked me to just drive around as if I were searching for a parking space and then he randomly shouted out things like: OH MY GOD, A BABY IN THE ROAD or LOOK OUT FOR THOSE NUNS; every single time, my response was to take my hands off the wheel and look away, as if I wasn’t really driving the car.  My instinct definitely veered in the flight direction and I obviously, in some seriously twisted part of my brain, figured if I ignored it, it wasn’t happening.

Of course, it turned out that my accidents were, in large part, due to RP and my limited peripheral vision, but at the time I had no idea that I had RP and that I wasn’t seeing things that fully sighted people would see.  That being said, I still took my hands off the wheel.

I wish I could say that I am one of those people who sees a challenge and jumps in with fearless determination; I am not.  I am, however, incredibly proficient at avoiding the things I can do to make challenging situations a little easier.  I eventually come around to face reality, but then I close my eyes and turn away like an insolent child; I don’t want this fucking problem, disease, etc., and I am not going to deal with it.  I have been doing it with RP for years, so I was bound to treat Zelda with the same dismissive attitude.

As I have said before, and will say a million times, RP is a total mind fuck.  It is purgatory.  It is the gray area covered in fog.  It is a disease that begs to be denied, especially by those who are well versed in denial.  But, RP is pesky and persistent and pops up often to remind me that I am defective.  No matter how much I want to, RP won’t let me take my hands off the wheel.

It doesn’t matter how many coats and hats I pile up on the hook over Zelda, she is in my head.  I have to find a way to see her as an ally, but I am struggling.  I feel the weight of her even when I don’t have her with me.  I went into my mobility training with a positive attitude, but discovered that this is, without question, the most difficult challenge I have faced in my RP journey.

I am having trouble fending off my insolence.  I keep screaming in my head that I don’t want RP and I don’t want the fucking cane, kicking at the reality of my disease and trying to reject it; but, I don’t have a choice, RP isn’t going anywhere.  If I don’t find a way to see Zelda as beneficial, one day, I am going to get seriously hurt.  The thing is, I can’t imagine it hurting more than it already does.