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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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Los Angeles

All I Have Right Now is Poetry

It has been a turbulent year. I haven’t done a lot of writing and almost no submitting, but I did have a few poems come out this month. Right now, it is all I have to share.

I already shared the poem in Orange Blossom Review, but if you would like to have another peek, you can do so here. My poem “Wax” appeared in Fresh Air Poetry, a new publication from the former editor of Amaryllis, Stephen Daniels. I also have a poem in this months Burning House Press that you can read here.

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Not That Kind of Writer

I tend to travel into the noise of my own mind rather than venture out into the chaotic immensity of the world.  I am not the writer who changes lives or shatters barriers. I am not a voice for the blind or a fighter of injustice.  I am not the scholar or the teacher.  I am the writer who gets lost and likes it that way.  I am self-centered and wrapped up in feelings more than in the physical world.  My emotions live on my skin and guide my decisions, dictate my choices. But, this feels shallow, opaque, as if I look up at the crisis of the world from a hole in the ground that surrounds me in darkness.  I sometimes read my own work and think, it must seem as if I don’t care that the world is falling to pieces around me. I do care.  I just care quietly.  I am not sure if that counts. Continue reading “Not That Kind of Writer”

B&W Photo Challenge Day 1

I was tagged a few days ago to participate in the black and white photo challenge by Grace, the creator of MS Graceful…NOT  If you aren’t familiar with Grace, go and check out her blog, and meet a woman who is strong as hell, funny, kind, talented and can swear with the best of them.  I am honored that she is my friend!

You know there are always rules to everything in life! The rules for this are straightforward. Seven days. Seven black and white photos of your life. No people. No explanation. Challenge someone new each day. 

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I am going to forego the challenge a person part of this challenge and just invite anyone to share who feels compelled to do so.

Short Essay in The Furious Gazelle

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!!!!

Under the Lacquer – Part 3

This third, and last, story about the women at the nail salon isn’t one I really know; it is woven from a few threads of detail given to me by her friends, but mostly from my imagination.

She is the lady that sings.

I don’t know her name and I can’t remember when she arrived, but I will never forget her voice.  Pop music usually invades the shop – apparently for the benefit of the customers – but every once in a while, Carol will put on Classical or Opera or just allow the shop to sit in silence for a bit.  It was a silent day the first time I heard her sing.  She walked out from the back of the shop, looking toward the windows and singing a Vietnamese song; her voice was gentle and clear.  She gave the words longing and anguish, and I felt as if I knew what the song was meant to say even though I didn’t understand the words.  She only sang for a minute and I am not sure she even knew she was singing; it was as if the song emanated from her and she sang, not for us, but for herself and in honor of the music.

I must have had a look of awe, because Jean approached me and said quietly,” Beautiful, yes?  She was a singer in Vietnam; for her life she sang.”

The woman who sings is the oldest in the shop, maybe 70.  She is short and a bit plump and has thinning grey hair that she allows to remain unkempt, as if she doesn’t have the time to care what others might think of her.  She is always smiling and seems to love the customers who joke and laugh the loudest, even though she moves quietly. I get the feeling that she has seen the darkest parts of life and has chosen to live inside her music and allow her voice to rise her up above trauma and pain.  Her upper back is covered in circular scars that look like they could have come from torture; they are definitely not shrapnel wounds as the circles are perfectly symmetrical, not haphazard like wounds that would have been caused by a blast.

I notice now that every time I am in the shop and she is there, the pop music is turned off.  It is as if she is being shown respect; all the women want to hear her sing.  I have heard her sing Opera in English and Italian, songs from musicals, and of course beautiful lilting songs from Vietnam.  Once, when Kim was away, the singing lady did my pedicure and I asked her about the song she was singing and if she sang professionally in Vietnam; she just smiled and kept singing.

A Quiet Sunday

The pugs and I just got back from our long walk of the day.  Sundays are my favorite because the neighborhood is still and quiet, even at 9 a.m..

I took them around the block to the street just west of us, which is a beautiful street with lots of grass and trees and an expansive sidewalk.  We came across a couple of people setting up yard sales and a jogger or two, but mostly it was just the 3 of us.

The morning was so lovely, I decided to take them to the park, hoping that we wouldn’t run into any terrifying rageful guys; sorry if you were hoping for another crazy in the park story……didn’t happen today.  The park was almost empty, except for a teenager riding around on a dirt bike and some Russians playing chess at a picnic table.  It was perfect.  We ran around on the grass and the girls had their way with the trees and it was just a frolicking good time.

When it started to get warm, I coerced the girls into heading in the direction of home.  I don’t know if you know anything about Pugs, but they are so stubborn, they give stubbornness a run for its money.  They do what they want, when they want….unless of course there are treats involved, and then they will do what you want..maybe.  They are so smart and amazing and loving, and I embrace their stubborn streak with totality; I am, after all, pretty damn stubborn myself.

So, with many treats enjoyed, we finally head toward home and I see a man across the street looking for something in his car. He was in his late sixties or early seventies, wearing khakis, a cream colored button down shirt and a beige cap.  He looked like a run of the mill guy giving his classic ford some TLC on a Sunday morning.  I just happened to turn my head in his direction, or I wouldn’t have had any idea he was there; he caught my eye and scowled – not unusual in my neighborhood; older conservative men can often be disapproving of all of my tattoos.  Jade was sniffing around a particularly enticing patch of dirt and I was minding my own business, just paying attention to my dogs, when all of a sudden, from across the street….motherfucker motherfucker motherfucker, fuck you satan fucker. I guess we must have caught the guy on a bad day.

Shut In

I have had to face a lot about myself during my almost three months of lessons with Tamar and one thing has been shining a huge light in my face the past couple of weeks; I am a total shut in, a hermit, an anti-social, never want to leave the house, crazy, chubby , middle-aged, hippie lady.  The fucking heat wave doesn’t help.

Every time I meet with Tamar, I have to tell her that I haven’t practiced all that much because I haven’t really gone out except once to visit my family and for short dog walks ( I don’t use Z when I am walking the dogs, so I am basically only using her once, maybe twice, a week.)  If Joe and I didn’t have the dogs, I may not leave the house at all.

I am, without question, an off the charts introvert; I don’t dislike people or being social, I just don’t like a lot of it.  However, I think my excuse of introversion has been a cover for being afraid to go out with limited vision.  Pre-Zelda, I sometimes went out without tripping, falling, or breaking, but it was always unpredictable; I was constantly anxious and it was easier to stay inside.  I was also avoiding the sun and the heat and the filth; but that is another story.

This shut in thing also presents a problem with my writing.  If I don’t leave the house, what the hell will I write about?  I can’t only write about my feelings; they just aren’t that interesting.

Now that I have Zelda and a whole new way of seeing the world, I need to get out into it, and listen and feel and write about it.  I need to put myself on the messy path of living outside of the safety of my apartment.

It is difficult to know, sometimes,  what I do because of who I am and what I do because of my blindness.  Can the two be separated? Differentiated?  Is there one without the other?  Does blindness dictate my whole existence?  Do I allow it to?  Do I have a choice?  Who would I be without it?  Am I blind first or am I me first?

I don’t know.

 

Lesson #3 Entirely with Zelda

I think I was on a bit of a cloud during my first two sessions with Tamar.  I was so proud of myself to have taken such a big step, impressed with her, safe with Joe there at the second lesson and feeling generally positive.  That changed.  By the third lesson, I began to question why I was learning to use the cane at all and feeling incredibly exhausted and overwhelmed by the whole process.  I have an unfortunate tendency to lose hold of the reality of a situation by trying to convince myself that it is all positive, and then,  everything that is difficult or challenging about whatever I am trying to do comes crashing around me. I have often just given up.  This time, I am not giving up; I can’t.

I sat in the lobby of the Braille Institute with Tamar for a while on Monday, wondering what I was doing there; why do I need to learn to use the cane when I can see my teacher showing me how to use it.  But, of course I know why I need to learn; it’s because RP is a total mind fuck.  I see and I don’t see; I have no idea what I don’t see, but what I see fools me into thinking I am seeing more than I actually see.  Do you see?  Total Mind Fuck!!!!!!!!

I watched all the people who had canes and couldn’t see me watching them and I felt like a fraud.  This is what RP does and it is really dangerous.  I am blind and I do need help and I do need the cane; the sooner I can embrace all of that fully, the sooner I will be able to relax and really let Zelda be a constant companion. I was also nervous because I knew that lesson #3 was going to be entirely with the cane.

I felt better after talking things out with Tamar; a little more justified, a bit calmer and also grateful that I have resources like the Braille Institute.  It was time for Zelda to come out of hiding.  First, we went into a quieter part of the BI where there is a long hallway and I walked up and down the hallway, using Zelda for safe passage.  I learned about more methodical scanning techniques and about different ways to actually use Zelda.  I can sweep her back and forth, or tap her from side to side or simply hold her in my left hand, when I am not using her, and allow her to glide in front of me.  I am having a tough time getting the 2 to 10 sweep and always end up too far to one side or the other, but I have the footwork down pretty well.  The thing is, if I am not maneuvering the cane in front of me in the proper way, I am at risk of missing a lot of what is in front of me, or unintentionally assaulting strangers.  I am going to have to practice at home.  I suck at homework.

We must have been in the hallway for close to an hour and then it was time for the stairs.  I wasn’t blindfolded for the stairs, but I did have to keep my eyes closed while I was practicing the steps Tamar taught me.  I won’t give you a detailed list of her instructions, but just know that there are a lot of them and I am not sure I even remember them all.  I was anxious and scared and wanting to be a good student.

Going up the stairs isn’t too bad; it does take some practice and there are specific ways to do it safely, but I didn’t feel particularly afraid doing it; just a bit bumbling at times.  Going down the stairs is a whole other thing.  It is super scary.  Have you ever had one of those dreams where you are falling and as you begin to plummet you wake up and your stomach drops?  That is what it feels like the first time you find the top step with your cane.  The lead up is like the steep climb of a roller coaster, except you have no idea when the drop is coming. The first time I found the step, I started just a few feet from the stairs, but it still took my breath away when Zelda dropped down into nothingness.  Then Tamar asked me to find the stairs from farther and farther away; this didn’t alleviate the anxiety, just prolonged it.  At one point, she led me around to disorient me, so I would have no idea how far from the stairs I was, and then pointed me in the right direction.  I learned that I have an annoying tendency to veer to the right as I am walking because I  apparently swing the cane too far to the right.  So much for being a graceful dance partner for Z.

We worked on the stairs for over an hour and I don’t think I relaxed for one minute.  I was stiff and exhausted and I couldn’t imagine how I would get through three months of this.  I can’t explain why, but for some reason, during this third lesson, the shit got real; maybe because it was finally a lesson entirely with the cane or because I experienced a new kind of fear around my blindness.  All I can say is that this whole blind thing is really hard; it isn’t impossible and I know during my lessons there will be ups and downs (literally), but it is a typhoon of emotions and experiences that I have no choice but to meet head on.  I am sure, however, that I will do it in my classic stubborn way.  I keep forgetting to take Z with me when I go out and I haven’t used her once since the lesson on Monday.  Perhaps this is my rebel week.  I will have to come clean with Tamar next Monday.

Braille and Other Bumpy Things

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After my head on collision with the pillar at Sprouts and months of grappling with fear,  anxiety and shame around the idea of mobility training, I finally went to the Braille institute. The decision to go to Braille, as a patron looking for services, changed the nature of my emotional relationship to RP.  It took me from being an incognito partially sighted person to being a blind person.  Of course I understand intellectually that I have been a blind person for quite a while now, but I was living in both the shadows I chose and the shadows that have been inflicted upon me.  I was making the decision to tell the world that I am blind.

The Braille Institute is huge; it takes up an entire block and houses a library, offices, classrooms, a lovely garden and a cafeteria.  I met with a woman named Jane who has worked for Braille for 12 years, so she was super informed and nice and wore a gorgeous black velvet dress.  As my husband says, people who choose to help the blind as a career are bound to be pretty nice people most of the time.

Jane led me to her office where she would conduct my entrance interview, and although I was pretty sure I wasn’t going to get turned away, I still felt like I was applying for university.  Her office was full of baskets that had been woven by blind art students, elephant sculptures and a gorgeous photograph of an elephant that took up half of one wall.  The lighting in her office was excruciatingly bright.

Jane proceeded to tell me about all the classes I could take; everything from braille and kitchen skills to creative writing and basket making (which she herself teaches).  She told me about government programs that will help me get a job and a ride and tons of different contraptions to help me use what remains of my vision to it’s fullest.  And finally we talked about Orientation and Mobility training; it was my primary reason for being there and I was thinking I would sign up and start right away.  This was not to be.  There was a waiting list and she told me it could be up to six months before I could start learning to use the cane.  I didn’t really mind the wait; I figured it might give me time to get used to the idea of bringing a white cane into my life.

At that point, I was feeling pretty good, wanting to avail of the services offered to me and be a part of my blind community, so I signed up for a support group, a crochet class and a creative writing class that I could start attending the very next week.

After my meeting with Jane, we retrieved my husband from the waiting area and she took us to the library; it is two floors of audio and braille books and even a small section of large print books.  I was issued a machine that plays audio books specifically made for Braille Institute and given information about an app called BARD that was created for the blind and offers free audio books right through your phone.  Things were looking pretty great and I was feeling positive about my choice to brave the Braille institute and come out from inside my self made shadows.

By the time Joe and I were leaving, having spent hours at Braille, my eyes were burning and aching from the excessively bright lighting all over the institute.  I turned to Joe in the car, exclaiming how ironic it was that after a day at a place made for the blind, my eyes hurt more than they had in months.

I suppose I was a bit over zealous on that first visit and didn’t end up taking any of the classes I signed up for, but I kept myself on the waiting list for mobility training and spent the next six months preparing myself for what was to come.

 

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