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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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White Canes for the Blind

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 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.

 

 

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.

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.

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.

 

#11 On our Own

Two days ago, I was visiting my Dad, and my StepMom got really sick.  So sick, we had to take her to the emergency room. She is totally fine now, but in the chaos of getting her to the ER, I left Zelda in my Dad’s car and haven’t been able to get there to pick her up.

I have to admit, not having Z the past couple of days has felt like a relief.  I got to go out and do errands at my own pace; of course my anxiety level was at an all time high, but I didn’t feel weighed down by the cane and at the time it felt like an o.k. trade off.  I started to feel like I might just retire her to an obscure hook in my closet and hope for the best when I go out walking.  But, then my husband interjected his usual wisdom.

Joe compared my not using Zelda to an insecure person continuing to drive when they know they should stop (which I can, of course, relate to, having had to give up driving at 34).  I think that what he was saying, in basic terms, is: everything is ok until it isn’t.  I may feel like being out with Z is fine because I still have usable vision and most of the time I make it back home unscathed, but that isn’t a guarantee.  I have probably had more close calls than I know about, because I didn’t see the car or person or bicycle etc. that I almost collided with.  Fuck….why is my husband always right?

Tomorrow, I will pick up Zelda.

Speaking of Zelda, today was supposed to be my 11th and last lesson with Tamar, but I cancelled it.  I thought it would be silly for me to show up at the Braille Institute to meet my O&M instructor without my cane, and I wasn’t sure until last night that my Step Mom was completely on the mend.  So, I texted Tamar to cancel and tell her that I thought we didn’t really need to meet again; for our previous meeting, I took her out to lunch and gave her a card and was totally prepared to say goodbye, so maybe I needed to stick to my plan and have that be our last meeting.  I suck at goodbyes and I didn’t want to have to go through it all again.  The problem is, I may have burned an important bridge; Tamar never got back to me and I don’t know if she is just busy or pissed off that I cancelled another lesson and told her I didn’t think I needed any more, in a text.  The text was super nice and filled with honest sentiments of gratitude, but perhaps she would have preferred a phone call, or maybe I just totally screwed up her schedule.  I figured she had taught me all I need for now and it was time for a new student to benefit from her skills and knowledge.  I hope that I didn’t completely piss her off, but in any case, my O&M training is officially over and Zelda and I are on our own.

 

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.

 

Eating Feelings

I have been eating my grief in mouthfuls of unhealthy foods and bottles of booze; since beginning my O&M lessons, I have gained 8 pounds.  But, recently, Joe changed shifts and I took it as an opportunity to get healthier, both emotionally and physically.  I haven’t had a drink since we started getting up at 4 a.m., and I thought I was eating better, but in the past week, I have gained 2 pounds.  I feel defeated and I know that I continually defeat myself;. it is an avalanche.

I have dropped down into dark places since I was a child, and although I have become more adept at getting myself out of them, the older I get, the less I want to get myself out.  I feel exhausted sometimes, just by the act of breathing and having to interact with the world on any level.  I can’t find the energy to propel the positive into a more prominent position than the negative; and so I eat.  I eat and I gain weight and I become more and more unrecognizable to myself.

It has also occurred to me, because I have gained so much weight during O&M,, that perhaps I eat so I can keep the focus on being over- weight rather than on things that are so much more important, like my writing and RP and Zelda and my close relationships. In my family, there in nothing worse than being over-weight, so if I stay over-weight, I get to keep being the failure in my family; my role stays intact and my focus steady.

Most days, I wake up wishing I could step out of my skin and be a better person for everyone around me.  A better wife and daughter and sister and friend.  Perhaps all of these feelings are happening simply because my O&M lessons are ending and it will be me and Zelda and blindness,  in a world that is breaking apart, a country that is falling into ruin under fists of rage and hatred.

I don’t write about this for sympathy, or even understanding, but simply because it is the truth and I know that it isn’t just my truth. So many people feel versions of this and I hope that my writing about it may help someone else feel less isolated.

This sadness isn’t all of who I am, just a part that I recognize and try to rise above so I can become someone better, someone who I know I can be. I look forward to the day when I can see the person behind all of this darkness.

 

 

 

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