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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 Cane

Contemplating the Water

My Dad lives across town and when I visit him, usually a couple of times a week, I often take the bus to UCLA and he picks me up by the medical buildings.  I was walking to meet him the other day, at the usual pick up place, not really paying attention because I am pretty familiar with the route, and bang; I had a head on collision with a bright blue light pole.  The thing is, I had Zelda with me…tucked safely inside my bag.

Zelda is my white cane and we hang out together, a lot.  I take her pretty much everywhere I go, but I have to be honest, I haven’t actually been using her.  I figured I could just use her when I need her, but this is some pretty skewed logic.  The nature of my blindness is that I don’t see what’s around me, so things like poles and curbs and cars, jump out at me from, seemingly, nowhere.   With the exception of walking at night and in dark spaces, I can’t really anticipate when I will need Z.  I understand that this means I probably need her all of the time, but that means accepting her and the truth of my vision loss.  How is it that I can live so deeply inside the reality of my blindness, and yet turn my back on it with such alacrity? Perhaps I am not really living inside the reality of my disease, but more tangled up in the confusion of it; one of the most difficult parts of my blindness is that I can still see.

I know that one day I will come to  accept and appreciate Zelda, but it has always been my way to come to things slowly.  I am more of a stare at the water for a really long time and contemplate the idea of putting a toe in, rather than a jump in with both feet, kind of person; honestly, I often get up and walk away from the water altogether, taking a road no-one else seems to see. I guess I am trying to walk away from my affliction, but the reality is that now, all roads lead back to RP.

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Waiting Games

For new readers:  When I refer to Zelda, I am not talking about a pet or a child or a childhood toy I just can’t seem to part with; Zelda is my white cane.

It seems I am always waiting; waiting for the next decline in my vision, waiting to hear about that poem I submitted 6 months ago, waiting for the package to be delivered from Amazon, waiting for the scale to give me good news, waiting for the next time I get to eat, waiting for the end of the day and that bottle of wine, waiting for it all to be over. And then, suddenly, something I have been waiting for, arrives.

On Monday of this week, I spent the day seeing doctors and getting tests; nothing serious, just inconvenient, exhausting, and honestly, pretty gross, so I am not going into further detail.   That said, I spent a lovely day maneuvering through the seriously fucked up American healthcare system, without Zelda.  I have been leaving her at home a lot lately; we are having a heat wave in Hollywood and I have been feeling lazy and not wanting to carry yet another thing when I go out, so Zelda gets left behind.  I may have also still been in a tiny little bit of denial, but it really is fucking hot here.

Anyway, I made it through most of my healthcare nightmare day unscathed, until I was being escorted out of the maze of the hospital by a kind, lovely and very fast walking ultra sound tech.  I was matching her pace, feeling confident striding down the corridor, and then she said, ” take a right here”, and she turned and I didn’t and the collision ensued.  When she said to turn right “here”, I thought she meant a right turn that I saw coming up about 10 feet ahead of us; the right turn she was actually talking about, I didn’t see. I had no idea what was next to me, or how close I had been walking to the wall, or how many adjoining corridors we had passed.  When she and I collided, my confidence plummeted to the ground, but I quickly scooped it up, apologized to her and told her I have severely limited vision and I really should have been using my cane.  I felt bad about almost knocking the poor woman down, but I didn’t feel embarrassed about admitting that I had a cane and that the collision was my fault because I should have been using it; it was just the truth.  If I had taken Z with me, the tech would have walked slower and I wouldn’t have been trying to groove right alone with her, feeling dangerously confident about my non-existent visual capabilities.  I took my time for the remainder of my walk through the hospital, and found a comfy chair to settle into while I waited for my husband to pick me up.

Yesterday, I was taking one of my frequent walks to the grocery store, sans Zelda, for the same reasons listed above.  As I approached the first street crossing, I thought I heard someone walking near me, but I had no idea how near. I slowed my pace a little, tuning my ears to the sounds of footfalls and rustling clothing, but when I got to the corner and reached for the cross button, I bumped into a woman who must have been just inches away from me. I still get fooled by RP a lot of the time and think people and objects can’t be as close to me as they actually are; my ears are not that well trained, yet.

The woman was super nice and friendly and didn’t seem to think twice about our collision, but it gave me pause. I realized, or perhaps I have known for a while, that my vision has gotten worse.  Decline in vision is something that someone with RP is always waiting for, but in my case there has been a lot of uncertainty about whether or not it is actually happening.  I am fortunate that my vision loss has had a very slow progression, and there have been so many times when I feel pretty convinced that I am not seeing as well,  and it turns out that my vision is stable.  This time is different. I feel the world pressing in against me; the shrinking circles of my vision have become more prominent.  But, somehow, being in the center of the decline, looking at the world with the heightened sensation of tunnel vision, I don’t feel afraid.  I have been waiting for this.

During the rest of my sojourn to the grocery store, I must have had at least 10 near collisions and people coming at me from, seemingly, out of nowhere.  I kept thinking over and over again, “I wish I had Zelda with me”.  I think I’ll take her out today, no matter how hot it is.

 

Across Town

*Note to new readers: When I refer to Zelda, I am not referring to my pet, child or doll, but to my white cane.

Across Town

A few weeks ago, maybe a month, I rescued Zelda from her hiding place on the hat rack and I have been carrying her with me whenever I go out, but she has remained folded up and tucked safely into her case.  I figured that eventually, I would encounter a situation where my anxiety about not being able to see would outweigh the anxiety looming over me about using Zelda.  I have, over the past month, found myself thinking about freeing Z from her case, and even wishing I had due to a few collisions and subsequent bruising, but she stayed put…until yesterday.

Most Tuesdays, I visit my Dad and Stepmom at their house across town, and on the days when my husband can’t drive me, I often feel anxious and start procrastinating when it gets close to the time I have to leave; even more so since Zelda became a part of my life.  I always thought that the anxiety was due to the thought of taking an Uber or Lyft; I see the convenience of both services, but I just don’t feel comfortable being alone in a car with a stranger.  I also thought I was being lazy because the bus is a hassle, but it became clear to me that part of the reason I get anxious is because taking the bus means a greater chance that I will need Zelda.  Yesterday was a gorgeous, cloudy day with chances of rain, and although I love these kind of days, they can play havoc with my vision; even though the clouds darken the sky, if there is any light at all, I need to wear my hat and sunglasses, which makes things even darker.

RP is such a tricky disease.  I have night blindness and trouble seeing in dim light, but sunlight or any kind of bright light also blinds me, and hurts like hell.  So, on cloudy days, I am faced with the choice of my vision being lessened by dark glasses or going without them and suffering from any amount of glare.  I almost always choose the sunglasses, but my nerves get a bit jostled either way.

Yesterday, after far too much time given to agonizing, I decided to take the bus, even though I felt certain that Zelda would have to make an appearance.  I walked out into the deliciously chilly day and travelled the 2 blocks to the bus stop, keeping Z in her case.  I have lived in my neighborhood for a long time and have a, most likely false, sense of security when it comes to knowing the layout of the streets; in any case, I felt like I didn’t need Z to help me to the bus stop and I got their unscathed.

Although there is a bus that gets me within a mile of my Dad’s house,  I usually take 2 busses because of a frightening incident that happened not to long ago; you can read about it here. But, yesterday, I was running late and I knew the traffic would be horrendous, so when the first bus to arrive was the one I don’t need to transfer from, I got on.  My anxiety was now doubled; I was anxious about Zelda and watching everyone who got on the bus to make sure no one was particularly frightening.

Even though it was Halloween, the ride across town was pretty tame, and by the time I got to my stop, I felt confident that no psycho killers were going to follow me off the bus; I got off and started the mile walk to my Dad’s house.  It had started sprinkling while I was on the bus, so the ground was wet and the sky had gotten darker, but still I kept Z safely tucked away.  About 300 feet from the bus stop, I came to an underpass that I had to enter in order to cross the extremely busy street to get to my Dad’s neighborhood.  I hesitated, but only for a few seconds, then reached behind me to get Zelda.

This was exactly the kind of situation I had been waiting for; I looked into the darkness of that underpass and I knew I needed help.  I knew that having Zelda in that moment would alleviate my anxiety, and it did.  I zipped through the underpass, across the busy street, and into my Dad’s neighborhood, with Zelda leading the way.  I felt liberated, but more importantly, I felt confident and safe.

Revelations

 

*A note to new readers:  Welcome to Stories from the Edge of Blindness and thank you for reading!  I just wanted to let you know that when I refer to Zelda (or Z), I am not talking about a pet or a child, but about my white cane.

Sometimes, I am walking down the street, or more often, to the kitchen, and I have these revelations about my relationship to RP and Zelda and the whole blind thing; I suppose I am thinking about it all the time, but mostly with a great deal of confusion about why I am struggling so much with this particular part of my RP story. However, occasionally, these nuggets of realization will pop into my head and lead me to a little more clarity.

Yesterday, my Dad was driving me to the bus and he asked, basically, how much the cane was influencing my life and what benefit, if any, it provides.  All I could tell him was that I was still feeling unsure and having a lot of internal struggle, asking myself the same questions he had asked me.  I told him that Zelda definitely helps reduce my anxiety in crowded places, which is true, but I think I probably sounded more like I was trying to convince myself,  rather than believing it.  I told him that I was glad I have her for situations when I feel anxious or I know my remaining vision will be compromised: for example, if I forget to wear a hat on a day that starts out cloudy and becomes sunny; even with my huge sunglasses, if any sun pops through the gaps at the top or to the sides, I am completely blind and Z would probably come in handy in that circumstance.  My Dad said he is also glad that I have her.

I forgot a hat yesterday because Joe and I left early in the morning, before the sun had fully shown its face, and we were rushed to get the dogs to the vet, so when my Dad dropped me off, I thought I may have to use Z to get safely to the actual bus stop.  I didn’t end up using her, but I thought about it…….

Anyway, I digress. Back to my oh so profound (probably not) revelation.

I feel that if I choose to avail of the assistance of Zelda then I am choosing to be blind.  On a logical level, I know this is ridiculous.  RP isn’t my choice, blindness isn’t my choice, and I am already legally blind, but emotionally I have drawn a line that I can’t manage to cross.  I am fighting the reality of my disease with iron clad resolve, and I am pretty damn stubborn when it comes to fighting off reality. My petulant self says that I don’t want to be blind and I don’t want this stupid fucking disease, so I will deny it for as long as I possibly can.  The problem is, RP has no respect for lines, no matter how solid they appear to be.

RP isn’t the same from day-to-day; it can change in a second due to lighting or the slightest turn of the head.  Something can be right in front of me one minute and gone the next; this is why I need Zelda.  But, I have had years of practice dealing with the moment to moment changes; I am really good at hiding my blindness, until I’m not and I’m on the ground, bruised and broken and hating myself for having RP.

I imagine everyone must be tired of me and my writing about this struggle with Zelda; I am a bit sick of it myself, but it is a reality of RP that I think is important to write about honestly.  I am stuck and afraid and trying to navigate my way through this chapter in the best ways I can.  I think these little revelatory nuggets help me face the realities and complexities of my disease and bring me closer to accepting Zelda as a part of my independence rather than a co-conspirator to what keeps me captive.

 

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.

 

 

 

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.

 

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?

 

 

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