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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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blind women

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.

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.

 

Avoiding Goodbyes

I was supposed to have my final lesson with Tamar yesterday, but I woke up feeling a sort of jet lag that resembled flu or an unfortunate hangover. Joe has started a new shift at work and we are now getting up at 4am, so my body is adjusting, but perhaps I was also putting off having to say goodbye to Tamar.

Now that I know my next lesson with Tamar will be my last, I have begun to feel exhausted just looking at Zelda.  She feels like a weight that I can’t bear, like a blanket covering my heart in this energy sucking heat wave that is melting the decrepit streets of Los Angeles. I feel desperate to leave her behind, along with RP and blindness and the cruelty of these sun filled days.

I try to keep my mind alive with the moments that Zelda has shown me freedom and a weightlessness in my existence that wasn’t there before I held her in my frightened grip. I force myself to take her with me everywhere I go, whether or not I actually use her, but I still find myself in agonizing contemplation over taking her or leaving her hanging on her crowded hook.

I take her from her resting place and sling her across my back like an iron burden.  She punctures the world I have pretended to live in for so many years and I feel her pulling me into an isolation that I crave more than I like to admit.  How can she be my burden and my protector?  How do I resolve this in my head and in my heart?  What will I do when I no longer have Tamar to lean on?

 

 

Castles

Last night, Joe and I were watching a BBC show about the history of some of the most famous and influential castles in England.  We love these kinds of programs and I have felt a connection to that part of the world since I was a little girl.  Every time we watch any British TV, I am filled with a longing to be in the clutches of such rich history and beautiful landscapes.  I feel the connection in my bones.

I was born in America, but I have never felt any particular allegiance to being American.  I haven’t always felt ashamed, as I do now; but I never felt proud of my country.  America has always felt vapid to me; decked out in the trappings of ego and superiority, but empty inside. It has always seemed to be that America has a persona,  but no character or personality. I am probably afflicted with a narrow view (literally, but in this case I mean figuratively), because I have always been convinced that I was supposed to be born in Europe but got cheated by being landed in the good old USA.

So anyway,  Joe and I are watching this show and the historian is walking around Dover, talking about it’s amazing history and showing us the intricacies of the castle.  As usual, I am watching in awe and also a bit of envy; this guy gets to walk around  an amazingly beautiful and historic place, while I get to look out my window at the perils of Hollywood.  There is something seriously wrong with this picture.

Last night, I was feeling my usual awe and envy, but then I started to feel a sense of urgency.  What if I never get to see any of the places I have dreamed about? What if, by the time we can scrape up the money and the time to get there, I have lost too much of my vision to be able to take in the scenery?  What if a lifetime of longing gets washed away in the darkness of RP?

I think that bringing Zelda into my life has made me feel this sense of urgency in a new way. I better hurry the fuck up, or Hollywood out my window may be the last thing I see. I tried to imagine myself at the Tower of London (another Castle he talked about) with Zelda and it didn’t feel right.  It isn’t how I was supposed to experience things, with partial sight and a long white cane.

I knew that I was having one of those moments I sometimes have, where I feel claustrophobic in my blindness and all I want to do is escape my skin and feel like a whole person.  I feel shackled by RP, static in darkness.

Perhaps I shouldn’t write about these episodes, but I do it because it is all part of the experience.  There are days when forging ahead seems impossible and I feel deprived and lonely.  There are moments I feel I would give anything to have never even heard of RP; and if I pretend these moments don’t exist, I am not being honest with myself or those I love.  If I edit out these feelings from my blog, then I am not telling the whole story, the true story.

 

#9 Winding Down

Tamar and I are nearing the end of our time together and soon, she will leave Zelda and I on our own.  I tried to think of ways to keep doing the lessons, but it is clear that she has given me all the tools I need and now it is up to me to implement them.  Today was our second to last lesson

Tamar is at the bottom of the stairs wearing a beautiful sunhat; black with a cherry blossom design across the brim.  She is, as ever, cheerful and warm.  We have a plan to go to the grocery store today and she also wants to practice street crossings, so we get on our way and start walking North toward Sunset.

I am getting the feeling that street crossings are what I should be most diligent about and also be practicing on a daily basis, whether or not I have actual errands to do.  About 3/4 of the way up the block, Tamar asks me to close my eyes and listen for the traffic and what it sounds like as we get closer.  It isn’t only the engines that grow louder as we approach the corner, but the sound of gravel under tires and dips in the road that rattle the underbellies of the cars.  I also feel the air speed up as the force of the cars manipulates the wind.  And then Zelda drops off the curb.

We come to the first street crossing, review scanning techniques and the timing of flagging the cane with scanning.  Tap and look left for the danger car (right hand turner).  Tap and look to the middle for left hand turners.  Tap and look right for any cars in the far lane that may sneak up to turn right  before you get to the other side of the street.  I thought I had this stuff down, I mean it is just logical, but I feel like I haven’t been doing it at all when I am alone.  Why is it so bloody hard to implement things that actually make so much sense?  I feel like an idiot, but I press on and try to get the flow.

We come to the second street and this one actually has a light; I stand on the corner for a while with my eyes closed, getting used to the sound of traffic and identifying my own location based on the sounds.  And then we cross and continue 2 more blocks until we are at the crossing to the grocery store.  Tamar teaches me a new thing here:  Even though I have to cross the street to the left, I proceed forward with my eyes closed until Zelda finds the curb in front of me to the East.  To find the right location for crossing in a northern direction, I follow the curb to the left and swing Z back and forth, always keeping the curb in her range.  I am tempted to just keep Z to the right and follow the curb continuously, but if I don’t swing her to the left, I won’t know when I have come to any obstacles on the left, including the pole that houses the cross walk button.  In the middle of the turn from East to North, the curb becomes flat  and this throws me at first; is Zelda in the street? But, Tamar reminds me of the wheel chair access at most intersections and instructs me to move further onto the sidewalk at this point, while continuing to swing Zelda and maintain an idea of the location of the curb.  When the ground slopes back up and I find the curb again, I am relieved and feel safe.  I swing my cane to the left and make contact with the light pole and Tamar tells me to do it again in the opposite direction.  I do this about 6 more times and then we get to cross the street toward the market.

I have actually been to the market several times with Zelda, so I feel pretty confident that I have it down.  The parking lot is tricky because there is no obvious pedestrian walkway into the store (you have to walk through the parking lot), but there are bumpy yellow grates to indicate when you have come to a place that requires looking out for traffic or that you have cleared the traffic and are safe.  It is just about being diligent, looking in all directions and making the cane visible before crossing over the lane.  I have been super careful about this since I was hit by a reversing car in this exact parking lot.

We make it safely across and go into the store; Tamar stops me in the entrance and tells me that I need to hold Zelda closer to the base of her grip and keep her closer to me when I am in places like the grocery store.  Oops.  I totally haven’t been doing this.  I have been the selfish blind person who has left it all up to the sighted people.  I have been in Ralphs (that is our store), cane fully extended and swinging to my heart’s content.  Tamar shows me that by doing that, I have been blocking isles and really not watching out for other people at all.  I can’t always leave it all up to Zelda, especially at the grocery store where people are always off in their own foodie worlds.  I will be more courteous in the future.

We take a short spin through Ralphs and then head to the pet store and home.  As usual, I was exhausted and happy at the end of our lesson, but also a little sad because I knew that the next would be the last.

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