Search

Stories From the Edge of Blindness

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

Category

relationships

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.

 

 

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.

Between the Barbs

While reading over some of my more recent posts, I kind of wanted to tell myself to stop bitching.  I suppose that I have been in a bit of a barbed mood lately, but there are wonderful things that happen between the barbs.

On the day of my RP appointment, my husband had jury duty and so couldn’t come with me.  He was waiting to hear if he had been selected and I was waiting to hear if he would be able to pick me up after the myriad of eye tests.  After the final eye exam with Dr. Sarraf and just before my last test ( an OCT), I got a text from my husband telling me he had been released from his civic duty and would be able to pick me up.  I was so happy and so excited to tell him of the positive outcome of my appointment.  I also got a text right about the same time from my dear friend Patricia, telling me that she was thinking of me and sending her love.  I felt loved and supported and I knew I wasn’t alone in my bizarre vision journey.

When my husband came to pick me up, I got into our truck and told him the good news and he became very emotional.  I have never felt so loved and cared for in my life. He seemed even happier than I was to hear that my vision is stable. I know that no matter what happens in this life, I have him with me to share all of it and I feel like the luckiest woman in the world.  He makes me feel like I have value, sighted, blind or in between.

When I checked facebook later that evening, another of my very close friends had posted something asking how my appointment went and two of my other dearest friends wrote the most beautiful comments here on wordpress.  I knew they were thinking about me and were genuinely happy to hear that all was as good as could be expected.

I feel loved and blessed and so fortunate.

Regarding another subject, The Sun: I know I write a lot about the sun and the heat and not entirely loving my current city, but I also have to say that all the time I spend indoors is in an apartment that I love.  It is the home that I share with my husband and it is my very favorite place to be.  I also have a lot of people in my life who are super generous and always offering to pick me up or drive me places, and my husband would be there in a heartbeat if I needed him.  And, my husband also hates the sun and the heat so we are entwined in a joint mission to move to a cooler climate.

Although I sometimes feel so very alone in this slow trek to blindness, I know that I am not really alone.  All I have to do is reach out and there will be arms to comfort me.

Reflections off Water

My husband and I took a whirlwind journey this weekend to attend a family function and I have to say I wish I could have left my RP at home.

We live in Los Angeles and the event was in San Francisco, so we decided to drive.  It is about a six-hour drive and we like the time together in the car chatting and singing and laughing, but it also means a day spent basically outside and even with sunglasses my eyes protest having to be subjected to so much sun time.  When we have done this drive in the past, I usually get a few hours upon arrival to rest my eyes  in a darkened room, but this time we had to go directly to the event.  The venue was beautiful, with windows facing a lake and sun reflecting off the water through the windows. A totally beautiful nightmare for someone like me.  Sunlight reflecting off water through windows is akin to having lasers beamed directly into the center of my eyes; even with my oversized sunglasses, it hurts like hell.

So, there we were, sitting in the front row closest to the windows, my eyes already feeling sore from the 6 hours in the car, and I am feeling like a full-blown freak because I am the only person in the room who is wearing sunglasses.  Did I mention it was a religious service?  We were there to celebrate my niece’s Bat Mitzvah and between my tattoos and my big Jackie O sunglasses, I don’t think I made a very good impression on the Rabi.

The service itself was absolutely beautiful and I shed many proud Auntie tears, but it was also over two hours long and by the time it concluded, my tears were partly from pride and partly from pain.

If you have ever attended a bat mitzvah (this was my second and my husband’s first), you know that a huge party always follows the lengthy service and as family we were expected to stay.  I knew I wouldn’t be able to make it to the end and started planning the quickest possible exit.  My eyes hurt so much I could barely keep them open.  I decided that a quiet retreat would be the best way to leave, so Joe and I went off as if to take a walk and disappeared into the early evening.

I have to admit I was incredibly relieved to be out of there, away from the pressure of being the dumpy blind black sheep in a family of diamond studded song birds, and away from the assault of sunlight reflecting off water.

Secrets

We all have secrets that we carry around like tiny treasures waiting to be revealed; the anecdotal secrets that we pull out in conversation with casual acquaintances and the deeper darker secrets that we share  with only those who are closest to us. RP is one of my secrets.  It is a secret because to the casual observer I appear normally sighted; I don’t yet use any mobility devices and I have learned to get around pretty well, with only the occasional bump, spill or fall that inevitably gets blamed on clumsiness.  It isn’t something I intentionally keep secret anymore, it is just hard to know how and when to tell people.  Every time I make a new friend, I agonize over telling them about my disease and wonder if it will change the way they feel about me. It makes me feel different and broken and it makes me wish I didn’t have such a secret to tell.  But tell I must.

Sometimes the opportunity to tell falls into my lap. When I was first hanging out with my friend Patricia (check out her Etsy site, called Connie’s Girl, from my blogroll) I began to think about telling her almost immediately; I really enjoyed spending time with her and I wanted her to know why she was always the designated driver.  One afternoon, we were in the tattoo shop waiting for our friend Emily to mix her inks and get her needles ready and Patricia showed me the book she was reading.  On the cover was a picture of a tattooed bald blind man; the book is called Cockeyed and it is a memoir about a man who has gone blind as a result of Retinitis Pigmentosa.  No time like the present.  I looked up at Patricia and said” this is so weird, I have the same eye disease as this guy”.  The book is a great read by the way.  When I told Patricia, it was relatively easy and she didn’t gasp or fall on the floor or reject me as a friend; quite the opposite.  She is one of my closest friends and has been supportive and interested and totally cool about always being the designated driver. She also introduced me to the man who would become my husband.

When I met my husband it was like a fairy tale. I was reluctantly accompanying some friends to a New Years Eve celebration that happened to be at my husband’s apartment.  Little did I know when I walked in that night that less than a year later it would be my home as well.  I remember feeling incredibly nervous as I walked up the stairs to the apartment, although my friends had told me that Joe was one of the easiest people to be around.  I walked in and Joe walked out of the kitchen in his jeans and t-shirt and stocking feet, holding a cup of tea and greeting us with the warmest smile; I felt instantly at ease.  I shook his hand and turned to put my coat on the back of one of his dining chairs and when I turned back to face him he was holding my earring in his outstretched hand.  I felt like Cinderella. Two years later I married my prince charming, but before I married him I had to tell him my secret.

Of course I remember the fairy tale aspects of that evening, but I also remember the moment before I noticed that Joe had his hand outstretched with my earring in his palm.  It is the moment in which I recognize that expectant look in someones face, that occurs when they are handing me something that I don’t see; the moment in which I remember that I am different, that I should be able to see that outstretched hand but I have been robbed of the ability to flow through this life gracefully.  The moment is fleeting and quick; so quick that no one would ever know that I can’t see what is around me. It is also the moment that makes me begin to wonder when I will have to tell my secret.

The New Years Eve celebration was a success as it resulted in Joe asking me for coffee.  He suggested that we meet somewhere, but I had to tell him that I don’t drive; he didn’t seem bothered by my status as a non driver and I wondered how he would feel when I told him how I came by that particular status.  I knew I wouldn’t tell him on our fist date.  First dates are for getting to know the vibe of a person and sharing those anecdotal secrets.  I wanted him to see me for who I am and not just as some poor blind girl.  So, should I tell him on our second date? Or our third?  I didn’t know.  I was afraid.  Afraid of scaring him off and being defined by my blindness and getting rejected.  But I knew it wasn’t fair to keep my RP from him for too long, so after we had been on three or four dates, I told him.  Joe didn’t bat an eye.  He said ok and gave me a kiss and we went out to dinner.  I guess he thought it over and decided he liked me, RP and all, because a year and a half later he asked me to marry him.  Joe had been my support and my love and my very best friend.  He has gotten involved with fundraising for research about RP and knows way more about all the current research around the world that I ever have.  He is my champion and I am forever grateful that I ventured out on that New Years Eve.

In the three years that Joe and I have been together, my vision has been stable but I have had to stop working and am now on permanent disability.  Keeping the secret at work was too much effort and I often came home at the end of a work day in tears, because the pain in my eyes was so severe.  I couldn’t take the glare of the computer and the neon lights.  I was also constantly exhausted from over compensating to hide the fact that I couldn’t see.  I remember one particular all day meeting that took place in a room that had a wall of windows facing an outdoor courtyard.  The sun shined in through the windows and everyone was delighted to be having the meeting in such a lovely spot, but I was devastated.  I knew I would have to wear my sunglasses for the entire meeting and that I would get comments.  I wasn’t disappointed.  At the lunch break, one of my co-workers approached me and said,” I guess you always have to try to be cool, wearing your sunglasses in a meeting”.  I just smiled and jokingly replied, ” I am always cool”.  Inside I was mortified and pissed off at what I felt was the total insensitivity of my coworker, but she didn’t know I was going blind.  I always made a point of telling my supervisors and closest colleagues that I have RP, but I didn’t think it was a secret everyone needed to know.  I continued to work for four years after this incident, coming home at night in pain and in tears and feeling constantly afraid that the people I worked with would discover my secret.

I feel such a sense of relief now that I no longer have to work and try to blend in with the sighted people in the working world.  I have become much more willing to tell people that I have RP.  I write about it and talk about it.  I explain why I don’t drive and I ask for help to get across a crowded room. I live with the bruises that come with crashing into a world that I don’t see.  I accept that I am going blind but I also admit every single day that I wish I could, just for a little while, flow gracefully through this life.

 

 

 

Blog at WordPress.com.

Up ↑