Stories From the Edge of Blindness

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


September 2017

Under the Lacquer – Part 2

I haven’t had the luxury of traveling or living in other countries, but what I learn from the people I meet in my regular, run of the mill life, enriches who I am and gives me images of a world I wouldn’t have without having met them.  I always feel like a person can give me a much better feeling of a place than a relic or even nature.

The entire time I have been frequenting my local nail shop, it has been managed by 2 sisters, Carol and Jean. The shop is a bit of a family affair; at least 2 other sisters and a cousin have worked there at one time or another.  They are a very close-knit family.

On one of the occasions when my regular pedicurist  was in Vietnam for a month, I had the pleasure of spending an hour and a bit with the older of the two sisters.  I didn’t know Carol very well at the time; I had gotten pedicures from her sister, Jean, and knew about Jean’s children and how they spent holidays together with all the family that lives in California, but I only knew that Carol was Jean’s older sister and that she often hosted these family holiday get togethers at her house.

That day, I ended up staying a while after my pedicure was over, and Carol talked to me about her life; her life before California. Two of the things I often ask people who I know are from different countries, are how long they have been in the states and have they only lived in California.  I find that asking these questions can often lead to someone sharing stories about where they are from; talking about life before nail shops and Hollywood.

I am not sure where in Vietnam Carol lived, but I do know that her husband was a soldier during the war.  I always felt as if the war must have profoundly impacted her  entire family, given the kind of bond that they all share. Carol didn’t talk about the specifics of the war itself, as Kim has, but she did tell me that her husband was part of a program that brought Vietnamese soldiers to the United States for asylum.  Carol’s husband was imprisoned by the VC for years and upon his release, he and Carol and their family were brought to safety.

It might be that Carol was able to bring most of the rest of her family here to California because she had been granted citizenship, but I may never know.  All I know is that most of the siblings are here, but her parents are still in Vietnam; at least one of the sisters goes to Vietnam every year to visit the parents, and this year they are all going because their father is 93 and very ill.

Carol is a remarkable woman.  The minute you meet her, you can feel her strength.  She is in charge and everyone around her knows it.  I felt really honored that she chose to tell me even a small piece of her story and I hope that I get a chance to spend more time with her and learn more about who she is and what has shaped her life.

I may never have the good fortune to actually travel to places like Vietnam, but I do have the good fortune of learning about and getting to know people who have come to California from vastly different countries and cultures.  I have learned that I don’t have to actually be in a place to feel it; I only have to take the time to get to know someone who has worn the fabric of that culture.

I guess I also, on some level, have to feel grateful for RP.  Although I think I have always had a curiosity and interest in people and their cultures, if I didn’t have RP, I may just be another Angeleno who spends their life in a car and in a hurry.  RP forces me to slow down and that suits my nature. I am grateful for all of the opportunities I have had and will have to truly know people who come onto my path, even if I can’t see them until they also take the time to slow down and come out of the shadows of the periphery.

Under the Lacquer – Part 1

Because I have been stripped of my wheels in an automobilecentric city, and because I am losing my vision at an unpredictable rate, I am happily forced to pay more attention to the world directly around me.  I have always had an interest in people and all the ways that others are different from me, and I haven’t ever been the person who is in a rush, so I stop and take the time to at least try to truly see. It is an ironically positive side of RP and it brings things into my life that may not have been there if I didn’t have RP.

Every two (or three if I am lazy and/or forgetful) weeks, I go to the nail shop around the corner for a pedicure. It isn’t because I am a princess, but because I can’t see my toes clearly enough to cut the nails in a way that even approaches presentable. I have been a customer at my local nail shop for over 10 years, and, as most nail shops in Los Angeles, it is staffed completely by Vietnamese women.

Every woman in the shop has an American name, and although I ask them to tell me their Vietnamese names, they are often reluctant to do so. When they do tell me, the names are often hard for me to pronounce, but I keep working at it because I want to be able to call them by the names they were originally given.

My tendency is to stick with one person for my pedicures; I like to establish a relationship with the woman who is touching my feet every two weeks. In my 10 years at All Star Nails, I have had just two different regular pedicurists (I have decided that is a word); first, it was Michelle (An Mei) who left because of a back problem, and for the past year, I have been seeing Kim.

Kim’s Vietnamese name is Nguyet; it means moon. It is a perfect name for Kim, as her mother must have known.  She is like the moon; she has a beautiful and vivacious light that makes it a joy to be around her, but she isn’t all flowers and sunshine.  Nguyet has an edginess to her that I equate to the darkness around the moon; it is where her secrets are kept and it is where her sarcasm lies in wait for those she truly knows and likes.  She has a quick, brilliant, and sometimes strange sense of humor and she loves being alive. The more I learn about her, the more I want to know, and I love her name, but Nguyet does not; she says it is too hard in the mouth, so I continue to call her Kim.

Kim is tiny in stature; there just isn’t another word for it.  She is 4’8 with a 7’8 personality.  The first time she did my pedicure was by chance; I hadn’t called for an appointment and she was the person who was available when I walked in.  I had wanted to meet her for a long time.  She is definitely the coolest looking pedicurist in the shop.  She has a short bob and an air about her that feels just slightly punk rock.  She wears a lot of printed leggings and a jade bracelet that has been on her wrist for over fifteen years; it is her version of a piercing.  During our first hour together, she told me that having the bracelet put on was very painful; there is no clasp, so it had to be forced on.  Kim told me that they use oils to help get it on, but her hand still had to be contorted and squished and after it was on, there was no way she was ever taking it off.  See, pretty damn punk rock; but, now I know that it isn’t Kim’s bracelet that makes her cool, it is who she is and the life that has shaped her.

Kim came to the U.S about 12 years ago, with her husband and two small sons; she later had a daughter who was born in the U.S.  She loves to show me pictures of her family and tell me about her kids: I have seen videos of her middle son giving his 8th grade commencement speech, photos of her oldest son with his new guitar and at his high school graduation, and videos of her 9-year-old daughter who is a total fire cracker, just like her mom.  Kim is always joking about her husband being so old – he is 13 years older than her – but I know that she adores him and that they are a super close family.

Just after Valentines Day, I was getting a pedicure and Kim brought out her phone to show me some new photos that her middle son had taken.  They were of Kim in her garden, sitting beside what looked like a giant topiary heart.  Her husband had apparently let the grass grow long so he could mow it and leave the heart shape in the center of the garden.  Kim said she doesn’t care about Valentines Day (and I am with her, no V day for me either), but I could tell she was thrilled at the romantic gesture from her husband.  He is clearly the softy in the family and she loves it.

Another afternoon, Kim showed me pictures of her family in Vietnam.  She was born and grew up in a beautiful city near the water; she met her husband there and her first two children were born there; her parents and most of her siblings still live there. In the photos, I recognized her kids and her husband and 2 older people I assumed were her parents, but there were also some people her age; one of them was in a wheel chair.  I asked about him and, at the time, she just said it was her oldest brother and he had been hurt.  I didn’t press her.

More recently, Kim has been taking more about her life as a child in Vietnam.  She told me that her brother is in the wheel chair because of a bomb.  Their city was bombed by the VC, and at the time of the bombing, Kim, her brother and father and 2 of her sisters were in the blast radius.  They were all injured.  Her older brother was hit in the back with shrapnel and a piece lodged in his spine; he was 5 years old and he would never walk again.  One of her sisters almost lost her arm, but was taken to a nearby hospital by helicopter, where they managed to save it.  Kim was only 3 years old at the time of the bombing and was left with shrapnel scars all over her legs.  She recalled to me how much blood there was and how afraid they all were.  She told me that her father still suffers from the memory of that day and that is plays like a film in his head over and over again.  One moment, they were a family in town for the afternoon and the next their lives were altered in every conceivable way, forever.

It is remarkable to me that I live in Hollywood and every two weeks I get to spend an hour or two with a woman who has seen things I can’t even begin to imagine; and yet we laugh and joke and have truly become friends.  Kim is one of the strongest and funniest people I have ever known and I feel so lucky to have met her and to be learning from her; I feel grateful that she has chosen to share the stories of her life with me.



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.

The Iron Fist Came Crashing Down

Last night, Joe and I were finishing season 1 of Iron Fist; we love all that Marvel Super Hero stuff, and although Dare Devil (obviously) holds a special place in my heart, I really like the Immortal Iron Fist (a.k.a.Danny Rand, a.k.a. Loras Tyrell).

Anyway, there we were, awaiting the fate of Madam Gao and all of a sudden I found myself staring into the, quite lovely, eyes of Danny Rand and felt the weight of the Iron Fist smashing me back into reality.  I asked Joe to pause the show.

I stared at the paused screen and did what I have been doing a hundred times a day for weeks.  I looked straight ahead and tried to determine what I could see in the peripheral field.  Joe was sitting next to me on the couch, about 2 feet to my right, and the dogs were on either side of me snuggled in close.  I asked Joe to look into the eyes of The Immortal Iron Fist and tell me if he could see me and if he could see the dogs.  He said he could, and I burst into tears, sobbing and understanding that all of the self-administered testing of my vision, and attempts at trying to prove to myself that I don’t need Zelda, were in vain.

When I looked at the screen, dead ahead of me, I couldn’t see Joe or the dogs or the picture above the T.V., or my fingers resting on my own shoulder, or even the entire T.V. screen. It was like I was being told for the first time that I am legally blind; the mask of the normally sighted woman, that I have donned for years, was torn away and smashed to pieces.

I think it is time for me to stop asking people what they can see; time to stop asking myself and just accept that no matter what I can still see, it isn’t enough to keep me safe.  I need to give Zelda another chance.

In a Thousand Directions

I need to begin this blog post by saying that I am not so sure I should actually publish it, but I probably will; more often than not, I do the things I shouldn’t do…….

I am in a dark place.  That phrase always strikes me as so fucking ironic, given the whole blind thing, but it is appropriate on so many levels.  So, yes, I am in a dark place; not the place I had imagined myself after completing my orientation and mobility lessons, but that isn’t a surprise.  I am an expert at building up the outcome of things and calling it being positive, when really I am just setting myself up to fail.

I imagined that I would emerge from O&M feeling a renewed sense of independence and freedom, but instead I feel like a huge weight has been tied around my neck.  I thought I would feel invigorated to go outside and be a part of the world, but I feel more isolated than ever.  I know that I am depressed, and that isn’t a new feeling for me, but because I had so vigorously anticipated  the opposite, I am pretty far down in the pit.

I have been spending countless hours trying to convince myself that I don’t need Zelda, so I can go back to my life before her; when I went hiking and shopping, and got to put some dedicated effort into pretending that my vision is just fine.  But, maybe it is just fine and I can keep getting by like I was before….until something super cataclysmic happens and I am thrust back into reality.  Or maybe that is the most stupid plan ever.

The point is, I don’t know.  I just don’t fucking know.  Is my vision really that bad?  Do I need Zelda?  Was the visual field correct?  I feel so crazy walking down the street with Z, seeing what’s in front of me.  Sure, if someone were to suddenly turn a corner or come around the side of me from behind, I wouldn’t have a clue they were there, but how often does that really happen?  Do I even know how often that happens?  Probably not because I can’t fucking see.  But, I can see.  I see you walking toward me.  I see that you have brown hair and a red shirt.  I see you from a block away.  But, I don’t see you from even a foot away if you are next to me.

I can’t get out of the mind fuck, and I had to face the fact today that I have been acting like a real asshole by allowing myself to continue to be completely consumed by all the emotions that have come up as a result of bringing Z into my life.  I haven’t been that nice to friends and I haven’t been a support to my husband in all the ways I would like to be.  I cut myself off from so much that made me feel good, all so I could focus entirely on something that shines a light on everything I feel I am not supposed to be; flawed and broken and fat and lazy and blind. Focusing on all of that made me mean, which is something that is really not ok.  Flawed, broken, fat, lazy and blind; well, those things just make me human.

If I sound like a total nutter….well, welcome to my brain.

I know that there are some people who may find the way I express myself to be detrimental, to me and to the blind community, but, come to think of it, they probably aren’t reading my blog.  Anyway, I just want to say that I am not a representative of the blind community, nor do I speak for visually impaired people.  All of this mass of crazy shit that I write about is just my journey and I have to do it as honestly as I can. My honesty is messy and uncomfortable and I feel so ashamed of it and of myself most of the time, but still I am compelled to write it out and scrape some of the bleakness off my  skin.

Morning Walk in the Park

Since Joe and I have embarked on this getting up at 4am thing, the second dog walk of the day is around 8 or 9, and I like to take the girls to the park if the temperature is still cool.  Today was particularly nice, not even 70 degrees, and I had hoped to spend a little longer than usual at the park.

As we headed down our most commonly utilized route, I saw a dog approaching that we didn’t know, so I decided to take a detour around to the back entrance of the park.  It is a bit further, but the street we walk down is quiet and the back of the park is often peaceful and fairly uninhabited.

When the park came into view, I saw that the area we were heading toward looked empty: at least I didn’t see anyone or any dogs inside my not so trustworthy field of vision.  The pugs were happily sniffing everything in sight – a few grossly unidentifiable things that they had to be pulled away from – and generally having a fabulous time.  We don’t often walk down this street, so everything must have smelled new and exciting to them.

When we walked into the park, I  noticed a young guy coming toward us, down the ramp that connects 2 small lawns to the larger park area.  He was walking fast and looking over his shoulder every few seconds as if he were being followed.  He was a slight guy with very skinny arms and legs.  He wore black shorts that were tattered and falling off his narrow hips; his white t-shirt was barren, torn, and covered in dirt.  The whites of his eyes blazed in my direction as he realized he wasn’t alone.

He sped up and in seconds was right next to me.  He paused, careened his head in my direction and shouted at the top of his lungs,” YOU FUCKING BITCH”.  He balled his hands into fists, turned and ran out of the park.

I checked to make sure that my pugs weren’t traumatized by his outburst, and after giving them treats for being good, sweet girls who knew not to provoke the crazy guy with a bunch of barking, I walked toward the ramp to the main park.  There was a man on his cell phone, talking to the police and giving a detailed description of the guy who had shouted at me.  He continued on after the guy and I continued into the park, where everyone I saw stood quietly, looking completely stunned. Crazy guy had clearly been leaving piles of his psychotic vibrato all over the park.

Part Time Cane

When I first started O&M, I resigned myself to having Zelda with me at all times and using her everywhere I went.  I grew to feel that if I didn’t do this, I was a bad student and an irresponsible blind person.  I felt that if I was taking the time and energy to bring Z into my life and learn how to use her properly, I should use her all of the time.  I started to resent the cane, to see her as a cross I had to bear rather than an aid to my safety.

Pretty much my whole life, my reaction to being told that I have to do something is to say fuck you, and go about not doing it as vigorously as possible.  But, I am no longer 12 and I do have grown up moments, so I found myself in a constant quandary around Zelda.  I wasn’t going to be able to employ my usual all or none way of doing things and, pathetically perhaps, it took me this long to figure out that I don’t have to.

I can use Zelda when I want to and when I feel I need to; I make the rules and I get to decide (and yes, I do realize that sounds a bit 12 years old, but I am who I am).  So far, I feel that it is most beneficial for me (and unsuspecting strangers) to have Z with me and use her when I am on my own.  I feel more confident walking down the street with her, shopping, on the bus etc.  However, when I am out with others, I haven’t really found a need for her.  My husband and my friends are really great about helping me when I need it and I feel like the cane just gets in the way; I usually bring her and she just hangs on the chair waiting for her turn around the block, which never comes.

So, I have decided that, for now, Z will be a part-time cane.  I get to feel good about having her, but not chained to her when I feel that I don’t need her.  I know that there will still be circumstances when I bring Z with me and she may or may not come out of her case.  There are times when it is better to give myself the option; for example, when I am out with the dogs or visiting a neighbor and don’t know if I will be back before it gets dark.  I definitely need Z in the dark and there have been a couple of incidents (pre Zelda) when I have had to call my husband to come and pick me up from just down the street or around the corner because it has gotten dark and I only have my sunglasses with me.  Sometimes I don’t plan to be out after dark, but it happens anyway.

I think that trying to become what I believed a blind person should be, actually put me in a position where I was stripping away parts of myself and adding to my confusion about my own vision.  There is not a right way to be blind; we all have different struggles and feelings and however I feel about or choose to deal with my blindness isn’t static, nothing is.

I am not sure how much vision I will have in a month or a year or 10 and I am sure that my feelings about the cane will change as my vision changes and I begin to recognize new situations in which having her would be beneficial; for now, I realize that Zelda is not a cross to bear, but an aid to utilize as I deem necessary.

Poem in Foxglove Journal

I am thrilled to have my poem, “Rose Tinted Glasses” in Foxglove Journal.  My thanks to Elizabeth Gibson who has created a beautiful journal.  I am honored to be among the writers she has chosen to publish.


Back in my Arms

I picked Zelda up yesterday; I can’t say I was particularly glad to see her, as her absence allowed me a couple of days of pretending that I can see perfectly well, but I also know it wouldn’t have been safe to prolong our reunion.

I spent the afternoon at my Dad’s and I felt like Z was staring at me from the hat rack, pleading with me to take her outside. And yes, I do realize that Zelda isn’t really alive and doesn’t stare, but she does bring the world to life and helps me see things.  Maybe she’s not so bad after all.

I have always been a bit of an escapist; I prefer Harry Potter to Science Monthly and I am always up for a good Super Hero movie or TV show.  I am pretty sure that any aversion I have to Zelda and her (almost constant) presence in my life, is directly related to how she keeps me from imagining that I am escaping my RP.  But, I have also gotten to experience how using Z opens the world up and shows me things I didn’t even realize I was missing.  I know, as using the cane becomes second nature, I  will feel more comfortable being out in the world; with her help, I will find stories that are waiting to be told and I will walk down the street without the weight of the anxiety that comes with limited vision.  And, as my vision deteriorates, I will have her with me to help me over the obstacles.

Life exists, for all of us, on a constant precipice and part of my struggle happens to be blindness; and yes, it sucks, and I wish I had never heard of fucking RP, but it is here to stay, and now I have this amazingly simple and kind of magical tool, in Zelda, that will allow me more freedom. I needed the couple of days away from her; it probably wasn’t an accident that I left her in my Dad’s car, and  I know the process will be slow – I am not a jump in with two feet, take the bull by the horns kind of person – but my pace is perfect for me.


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