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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

#7 Off-Roading with Zelda and Tamar

I have officially graduated from my lessons at the Braille Institute; Tamar came over to my house today and we have begun our lessons out in the (mostly) sighted world.  Although I have been using Zelda when I am out alone, it is a whole new world with Tamar, who can guide me step by step – sometimes literally – and give me critique about how I am doing with Zelda.  There  is always a bit of performance anxiety when I am using Zelda in front of Tamar, but it is a good anxiety that gets me to understand the importance of and pay attention to the details I sometimes forget when I am on my own.

I have to admit that lack of practice is a huge obstacle that stands like a concrete wall between me and progress with Zelda.  Having taken a week off and only been out once on my own when I actually used Z, I needed a good long therapy session before Tamar and I headed outside into the neighborhood.  She is incredibly patient and intuitive about when I need a bit of time before beginning the practical part of the lesson.  I have been pretty forthcoming about my anxiety in using Z in my neighborhood, so today we spent about half the time talking in my apartment.

I talked further about my fraud feelings and she told me that she sees this more in RPer’s than anyone else; she said it seems to take longer for us to get through the emotional barriers because, in many cases, those of us with RP have pretty good central vision.  I felt relieved actually, to hear that I am not the only emotional basket case and that lots of other people with RP are victims to its total mind fuck.  Tamar also reiterated that she believes I need the cane and that I am doing the right thing in getting the training now. If only I had her certainty about it.

Before we went out, Tamar suggested a sort of makeshift way to gage my field of vision, so both she and I could get a clearer picture of what I actually see.  We got out some old- school, bright pink construction paper and Tamar cut out a triangle to tape to the wall.  She asked me to focus on the triangle and then moved pink squares of paper in toward the center, from both sides and the bottom and top, until I could see them.  She taped the squares to the wall at the spots where I said I could see them and this denoted my field of vision.  Obviously, it isn’t exact, but it is a good reference to have.  However, it also makes me question myself, just like a proper visual field test does.

I am not always sure what it means when asked if or when I see something in my peripheral field.  Does seeing mean seeing clearly or thinking that maybe you have some visual awareness of something?  If I am focusing on one spot, do I actually see what is coming in from the sides or am I concentrating on it so hard that I think I might see it?  In the case of today’s experiment, the pink squares, and in a visual field test, the red lights.  I often do little tests on myself; bringing my hands in from the sides or up from the ground, trying to gage when I can see them.  I feel like it isn’t always the same.  Some days I feel like I am seeing the whole word around me and some days, I feel like I am looking at the world through a tunnel.  So, what’s real and how do I know it’s real?  It all makes me feel crazy and it puts me in a position where I am still constantly questioning whether or not I actually need to be doing the cane training.  I don’t know when this ends, or if it ever will; and I don’t know how to move beyond it so I can just use the goddamn cane regardless of how much vision I do or don’t have.

There is another bizarre phenomenon that occurs when you have RP.  You can be walking down a hall or corridor and all of a sudden, you see something flying at you from the periphery, but there is nothing there.  It feels so real, that I have almost fallen backwards to get away from the phantom flying thing.  So, is what I think I might see in the visual field experiments a phantom or do I see it?  I don’t think it helps that I question absolutely everything I do, think, say or feel in most circumstances that have nothing to do with vision or lack thereof, so when it comes to my vision loss, I feel as if I am in a constant state of unknowing.

I took a break from blogging and went to have dinner with my friend Patricia who, as always, listened patiently to  my ranting and came up with a brilliant suggestion.  She had the idea that I think of some ritual to mark this period of mourning in my RP journey; a tattoo, a ceremony , a burning of something; just something that acts as a tangible marker of this experience.  She suggested that perhaps if I ritualized these losses in some way, it may give some sense of finality and help me move into the next phase of my life and of my disease.  I  love the idea.

After the therapy session with Tamar this morning, we did make it out of the apartment.  It was to be my longest walk around my neighborhood and the most in-depth.

First, I used Z to go down the stairs from my apartment; something I hadn’t done yet.  It all came back pretty easily and I got to the bottom unscathed.  Then, we decided to walk down my street and around the block.  I start walking, Tamar behind me to gage my stride and swing: it turns out that my formerly wider than necessary swing has now become too narrow.

We stopped just outside my building where Tamar asked me to look around and identify tangible landmarks that can tell me where I am when I have no use of vision.  For example, just north of my driveway, there is a hedge that is taller than I am, and at the south end of my driveway is a tall and dented metal pole.

We walked down to the end of my block and spent a long time at the street crossing; the intersection at the south end of my block is a pretty basic four-way with traffic lights and no left turn arrows, but Tamar wanted me to tell locate my buddy cars, danger car and go over the flagging steps to make sure I was confident before crossing the street. I had told her earlier that I wasn’t warming to the flagging the cane thing, but she let me know that it is the most important part; it let’s people know that you are there and is the biggest safety precaution for blind people crossing the street.  So, I flagged the hell out of Zelda.

We continued east and came to the next street crossing; a 3 way intersection with one stop sign.  The only obstacle at this crossing was a large hedge that blocks the pedestrians from the right turning cars, so I had to step a bit into the street to make sure it was clear before I walked.  Not to bad.

After the second crossing, we headed North and I could see a huge obstacle course on the sidewalk up ahead.  Tamar was excited. We got to the rough terrain, and she asked me to close my eyes.  I started tentatively.  This wasn’t just a patch with a bit of raised sidewalk; there was also an orange traffic cone, a grassy hole in the middle of the course and loose slabs of concrete that had been placed there presumably to make the ground more even; it didn’t work.  To the right of the monster obstacle was a patch of dried lawn, so I headed in that direction.  Tamar asked me to go the hard way.  Without any use of my eyes, I took one small slow step at a time, feeling first with Zelda, then with my left foot while keeping my right planted to steady me.  When I hit the cone with Z, I anchored her in front of me for safety and felt with my hands to find the cone and whatever other obstacles may be around.  I hesitated and teetered a bit, but I made it safely across.  I felt as if I had scaled a mountain.  I opened my eyes and gave Tamar a smile; ” Let’s do it again,” she said.

I made it across the obstacle in the other direction, but it felt like entirely new terrain.  I found the cone, which was a great marker, but it wasn’t where I expected it to be.  It may be common sense to some, but I didn’t have the time to flip the course in my head and without the use of my vision, it was entirely different.  I do have some usable vision still, so I am lucky that I don’t have to rely on everything Tamar is teaching me now, but I will have the skills and the information if and when the time comes that I need them.

The three of us continued up the block and we came to another 3 way street crossing without much event except an enormous truck that pulled out of a driveway toward the intersection.  I decided that I didn’t feel safe crossing, so we waited for the next light and walked back toward my street.  During the last half block, I looked for landmarks and tried to keep my swing wide enough for Z to give me any necessary information about the ground in front of me.  We stopped in my driveway to say goodbye and Tamar said, “next time I want you to do it blindfolded.”  Holy crap.  I was hoping we’d go grocery shopping.

 

#6 Flag Your Cane

I am at the halfway point in my O&M training; 6 weeks with Zelda and I still have such a long way to go.

Tamar and I started our lesson today back in the cafeteria, with the model and the toy cars.  We reviewed the car positions and terms and I talked to her about my week. Then, she showed me, using the street crossing model, how to best use my remaining vision to cross safely.  Everything Tamar teaches me adheres to a systematic pattern.  She takes the random out of the equation so confidence can step in. It works and is all pretty simple, just a lot to remember.

The visual scanning while crossing the street follows a logical progression, which honestly would help sighted pedestrians (minus the cane parts, obviously) as well.  It goes like this: You position yourself at the corner where you want to cross, identifying where the curb is and holding your cane out to the left so it is visible –   Light turns green – You make sure that the cars in your near side parallel lane are going straight – You flag your cane 3 times (more about this later) – You check that your danger car (always the car to your left) has seen you and determine if they are turning right – If you feel confident that the car isn’t turning, you step into the cross walk and look left, scanning the first lanes you cross in front of (are they stopped?) – Half way across the first half of the crosswalk, you look toward the middle of the intersection, scanning for left turners – At half way across, you focus on the cars just right of center in front of you, keeping an eye out for right turners – and, there you are, safely across the street.  Tamar emphasized two things; if you don’t feel confident that it is safe to cross, wait until the next light, and the most danger is always to your left.

We worked with the model and the toy cars for a while and Tamar drew me some diagrams to take home, and I thought we were done for the day.  No such luck.  She felt I was ready to go outside and give the actual cross walks a try.  I wasn’t afraid -Tamar was with -me but I did have some performance anxiety.  As we walked out of the Braille Institute together, for the first time I might add, I tried to remember everything she had taught me in the 6 weeks I have known her.  I know she wasn’t judging me, but I like her and I want to be a good student.

We went out to Vermont; super busy street, lots of traffic, lots of pedestrians, crumbling curbs, typical L.A..  Did you forget about flagging the cane?  I wish I could.  It is pretty much the shining example of why I have been anxious about Zelda.  It is a screaming spotlight on my existence.  The sole purpose of flagging your cane is to draw a momentum of attention to yourself, for safety of course.  So, I am sure you get the picture:  flagging your cane means you tap it on the ground and bring it up into the air in front of you (high enough so people can really see it) before tapping again.  Repeat 3 times.  I may as well be standing on the street corner shouting to the world that I am there.  Talk about jumping full force out of the shadows.

I found my position and used the visual scanning techniques and flagged my cane; I did this across all four sides of an intersection in both directions.  I think I did pretty well, although I apparently wasn’t lifting my cane high enough while flagging.  No surprise there.

I know that having and using Zelda makes the world a safer place for me.  I know that the visibility that Z gives me makes the world a safer place for me.  But, it is hard to get over a lifetime of approaching any kind of attention with anxiety and dread.  I have always been the girl who no-one could see and now, I am becoming the blind lady in the neighborhood, who everyone sees because I can’t see them.  That is some serious fucking irony for you.

I better start embracing my new reality, because next week, Tamar is coming to my neighborhood, and I don’t think she will be cool with us just staying in the apartment.

 

My First Helpful Person

I was at UCLA the other day, routine stuff, nothing to do with RP, and I was cruising around with Zelda.  I find it most advantageous to keep my hat and sunglasses on when Z and I are on the move. It makes me feel more clandestine and it makes me look more blind.   I seem to be thinking about myself what I believe sighted people  are thinking about me; I can see, so why the hell do I have the cane?  I know why, I have written about why, I get it both logically and emotionally, but still I feel like I am not blind enough or not a good enough blind person.  Perhaps that is just my usual way of thinking about myself in regard to life in general; I am never good enough.

Anyway, I was walking around being a not good enough blind person, and when I went into the medical building, it was full of tarps and tape and wood and all sorts of construction devices. I needed to get down to the basement level to the radiology department, but it looked like the elevators were blocked off.  I walked around aimlessly for a while, not sure where to go and then headed for the stairwell.  I figured I could get to the basement and practice using  Z on the stairs.

As I neared the stairs, I heard a man approach and ask, ” Ma’m, do you need help?  You are heading for the stairs.  Are you sure you want the stairs?”

I, of course, knew I was headed for the stairs, but realizing that it wasn’t the smartest path to take and not wanting to refuse someones kindness, I told the man I was looking for the basement.  He immediately took charge of the situation, saying, “I’ve got you”.

He began directing me to the elevator.  He was actually a pretty good guide; telling me 2 feet before I needed to turn and making sure I had room to walk through groups of people. I have to say, it felt really bizarre and I felt like a fraud of sorts.  I could tell that he thought I was totally blind and I didn’t know how to tell him that all I needed was to be shown the way to the elevator. I felt swept up in the whole scenario and he was my first helpful stranger, so I just went along with him.

He took me all the way to the basement, guided me to a chair and even helped me check in.  That is when it got a little weird.

He assumed that I couldn’t see anything; and why wouldn’t he? I didn’t tell him any different.  When he went to help check me in, the receptionist told him that I had to fill in forms on an iPad and he gave her a look saying he didn’t think I was going to be able to do that.  He really was looking out for me (literally), but I had to tell him at that point that it was ok and I could fill out the questionnaire on my own.  I explained that it is my peripheral vision that is affected but that I can still read.

“Oh,” he said, “so it’s not completely gone.” He looked a little embarrassed. I felt terrible, as he had been so nice to me.  I thanked him profusely for his kindness and he left the waiting room rather quickly.  I wish I could have talked to him more, about RP and about how terrific he had been with me.

His name was Joe, by the way.  How great that my first helpful stranger was named Joe.

 

Step off the Curb

The incident that precipitated my contacting the Braille Institute took place in a grocery store.  In case you didn’t read about it in an earlier post, it basically involved me and an enormous pillar; one second I was heading for the bulk items section and the next I was flat on the ground, having had a head on collision with the pillar.  Joe and I agreed it was time for me to get a white cane.

Jump ahead many months and I have my cane and I am learning from a great instructor and the grocery store is still my nemesis.  I know that if I can get the courage to use Z in the grocery store, it will make shopping so much less stressful, but I just couldn’t pluck up the courage, until a few days ago.

I left for Ralphs (our local grocery store) with Z folded and in my hand, giving myself a pep talk to help with getting some courage. I got outside and I thought about unfolding her, but I didn’t.  I walked the half block up to Sunset and the 2 blocks east on Sunset toward Ralphs with Z still folded in my hand.  Then I came to the light and stopped.  The light turned green and I didn’t cross.  I waiting through 2 lights, trying to talk myself into unfolding Zelda and finally, I did it.  I walked to the curb, waited for the light to change and crossed the street to Ralphs.

I know that I have been writing a lot about my reticence to use Z in my neighborhood; trying to explain it to you and to help myself understand as well.  I keep coming back to the same conclusion; I am terrified of the attention Zelda will bring to me.  I have loved being able to live with anonymity, to go through the city as if I were invisible, and I know that won’t be possible anymore.  But, the alternative, if I don’t use Zelda, is potentially dangerous.  I have to get the fuck over myself.

So, I cross the street, walk through the Ralphs parking lot and in through the sliding doors. The entrance is often the most congested part of the market and the part that causes me the most anxiety.  I usually move through the crowd trying to make myself as small as possible, afraid every second of what or with whom I may collide.  This time, people stopped and moved to the side and let me through.  They stared, but not with cruelty, and they got silent, but there was no disdain in the quiet.  They may have felt some pity or curiosity, but all I cared about was that I had walked into the grocery store without feeling paralyzed by my own anxiety. I felt the spotlight on me, but it was something I could get used to.

Then, the spotlight became a strobe light.  I passed the row of checkout counters and one of the Ralphs employees called out,”Do you need any help shopping miss?” I didn’t pause or turn around, just said no thank you and kept walking.  It actually made me smile. He was being nice and I felt like I had stepped into a new part of the reality of this whole white cane thing, into the thick of it really, and I was proud of myself.

I finished my shopping, unscathed, and continued on to the pet store and then home.  I didn’t fold Zelda up until I got to the top of my stairs.

 

#5 Playing With Toy Cars

My 5th lesson with Tamar wasn’t a long one and it didn’t involve using Zelda, but I did get to play with toy cars.

I got there a little bit late.  It was an early lesson and I knew I would need coffee in order to function, so I suggested to Joe that we visit the drive through at McDonalds, across the street from the Braille Institute.  I don’t normally do McDonalds, but I was desperate for some caffeine.  I ordered a latte’ and it was apparently a special order because we were asked to drive to a reserved area and wait for someone to bring the latte’ to us.  I was already running late and the latte’ put me back a further ten minutes, but it was pretty good and Tamar didn’t seem to bothered; I had texted her to let her know that the need for coffee had won out over timeliness.

I unfolded Z outside the BI and went inside to wait for Tamar in the lobby; I think people are starting to recognize me because they are even friendlier than when I fist went to Braille, and I am no longer required to wear a visitor sticker.  I am one of the regulars now.

Tamar met me in the lobby with a large piece of painted cardboard and some zippered pouches; she said that it was time to learn how to safely approach and maneuver street crossings.  Then we went into the cafeteria.  No, there are not any street crossings in the cafeteria, but Tamar had come equipped with a miniature model of a  street and plenty of toy cars.

I could give you the play by play of what she taught me, but let me just give you the key terms: Near Side Parallel, Far Side Parallel, Near Side Perpendicular, Far Side Perpendicular and Buddy Car.  I am now armed with these terms at every cross walk I encounter.

I stop at the light and even if I still have time to cross, I wait until the next light because this gives me the chance to get a handle on what the cars in all 4 positions are doing, and locate my buddy car, which is the car in the Near Side Parallel position. Tamar suggested that while I am learning, I pay attention to the cars rather than relying on the walk signals.

The light turns green, I listen for the surge of engines of the cars driving parallel to the cross walk and the car to my left that could potentially be turning right.  Once I see the car in the lane parallel to the crosswalk start to move and make sure there are no right turners to my left, I know it is safe to cross.  If this sounds confusing, it totally is.  It is learning to cross the street all over again; just more safely and efficiently.

I find myself thinking about car positions now, not only when I am at a cross walk, but when I am walking down the sidewalk or in the car with Joe. There is so much to remember and so many steps in ensuring that I am doing things in the safest possible way for myself and others.  I look forward to the time when it is all just second nature.

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