Stories From the Edge of Blindness

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


October 2017

Hands off the Wheel

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.




Being a Writer


While reading a friend’s blog this morning (The Incurable Dreamer), I found myself thinking about what it means to be a writer.  She is a brilliant writer and has chosen to dedicate herself to it, which makes me happy for her, and for me, and everyone who gets to read her stuff. She gets what it means to be a writer.

I come from a family that is overflowing with achievement; there are doctors, lawyers, city planners and politicians, and then there is me.  Whenever I meet a friend of my parents (invariably another doctor), they always get excited and ask me if I am the “doctor daughter”, and then look uncomfortable and slightly disappointed when I tell them that I am a writer; when I tell them I write poetry, they can’t get away fast enough.  I don’t fit into the perfect package that my family represents and that makes people uncomfortable; and, ok,  having an abundance of tattoos may also factor into the discomfort thing a tiny bit, but I kind of love that.

Don’t get me wrong, my family is supportive of my writing (not so much with the tattoos), but for so long, I felt like being a writer wasn’t a viable thing because I hadn’t gone to school to study how to be a writer and because I wasn’t getting published in all the top magazines; I had no clear signs of accomplishment and that meant I was a big pile of nothing sitting off in the corner while my accomplished siblings were being praised for all of their hard work, as if I could never understand what it means to work hard. My parents and my brothers and sisters are all super amazing people who do work really hard and I am proud of them, but I am not nothing. I am a writer.  I am a writer; but what does that mean? It took me a long time to figure it out and to be able to talk about it with confidence.

For years, I struggled with the question of whether or not I was actually a writer and doubted myself whenever I told people that I was. I have written everything from poetry to one-act plays, but until recently my writing was sporadic.  I was a writer in moniker and desire, but not in practice. I wasn’t writing.

I didn’t believe I had the credentials to be a writer, so I went about trying to find a real job.  I found a thousand real jobs; some I liked, some I hated, but none made me feel fulfilled, or like I was doing the thing I was meant to do.  I knew, in my heart, that I was a writer.  I had been a writer since I was 6 years old when I wrote a Thanksgiving story about a turkey who commits suicide; it was called “The Sad Turkey”, and it was about a turkey who decided to commit suicide because he knew he would be killed for some fancy Thanksgiving dinner.  Pretty imaginative for a 6-year-old, right?

When I stopped working a regular job in 2009, I had big plans. I was going to write a memoir and get published; instead, I made a lot of popcorn and watched a lot of T.V.  When I started this blog, I was certain that it would be the answer to my writing woes; it would help me get my memoir done and get me published.  But, I barely posted; months went by and I didn’t go near the computer because I felt guilty for not writing blog posts.

I know now that I needed the time to adjust to the reason that I had stopped working a regular job; I had to give myself time to come to terms with the fact that RP had started to affect my life in more impactful ways and I wasn’t ready to write about it on a regular basis.  I had been given a gift of sorts, but I wasn’t ready to open it up.

Years went by and I still wasn’t writing regularly, even though I know that when I am writing I feel full and satisfied.  I had stopped writing poetry because I felt that it would never be lucrative and I really had no business calling myself a poet given that I have no formal education in writing.  The problem was that poetry is my first love, as a writer.  Poetry is where my pulse lives and it is what inspires me.

A few years ago, I decided to stop stressing about the blog and start writing poetry again. I felt inspired and satiated.  I wrote tons of poems and edited a bunch of old pieces; I got motivated and started to enter contests and submit my work.  I returned to the blog with a new energy and I dedicated myself to writing.

Degrees and  publication credits don’t make me a writer.  I am a writer simply because I write.  I have discovered that, for me, being a writer means doing the writing, fulfilling that part of myself that only writing can fulfill ; it is reaching into your darkness and your light, being brave enough to face whatever you may find there, and sharing those discoveries. Being a writer is hard work and often lonely work, but it is the work that speaks to me.

I am not nothing.  I am a writer.


Guilt, Safety and More Blind Lady Stuff

So, I am walking home from the grocery store a few days ago, sans Zelda, and feeling my usual combination of freedom, guilt and anxiety.  I was moving pretty gracefully(I think) over all the Hollywood debris and I came to a small intersection where the light was red, which seriously interrupted my groove.  I am doing my usual scanning of my surroundings thing that RP has helped me become good at, and I see a guy talking to the gate just around the corner.

He is clearly enamored with this gate, and it is pretty nice as gates go – slick black iron with wide, solid and shiny bars- but his feelings are clearly going way beyond admiration. His expression is coy and flirtatious and he is speaking in a whisper;  he and the gate are clearly sharing something intimate.  I try to ignore him, but it is hard not to notice a love like that. His eyes are ablaze with passion, but I can’t see his hands. The light is taking forever to turn green.

Just as I am looking away, he looks up and sees me.  I guess his love for the gate is fleeting because now he is giving me the flirty eyes; at least it isn’t rage this time.  He grins at me and starts to move away from the gate.  He comes around the corner and I realize why I couldn’t see his hands; they are in his pants.  His hands are moving around inside his filthy, tattered, barely covering his ass pants; you get the picture.

He sashays toward me, eyes wild and teeth alight, and then he notices the gate again and walks right past me.  But, I can feel him behind me, looking from me to the gate and back again.  I am sure he thinks I can see him, but I only hear and sense that he is still there. The light turns green and I am out of there, leaving him and the gate in their rapture.

As I walk the two last blocks to my apartment, something new occurs to me regarding Zelda and my safety.  I feel guilty every time I leave the house without Z, and burdened whenever I have her with me, but I have always thought it is safer when I have her; now I am not so sure.  Perhaps, it depends on the neighborhood.  I have had some pretty freaky experiences in my neighborhood and more truly insane people seem to be taking up residence in the past few months; it seems to me that it might be safer if they think I can see them coming rather than knowing I can’t.

Clearly I am still working out the whole Zelda thing and I know my feelings about her will change as my vision changes, but I have to consider my surroundings and what feels safest to me.  For now, I prefer that the residents of the tent towns that are popping up all over the Hollywood sidewalks, don’t know that I am blind.




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.

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