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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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zelda the white cane

#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.

 

A Week Off

I took a break from O&M this week; my determination has fallen somewhere beneath my feet and I needed to find it.  I am still struggling with feelings of being a fraud, but whenever those thoughts creep up, I can pretty readily find examples of why I need Zelda.

Last week, I was turning a corner, leaving the shopping complex where we buy our dog and cat food; I was using Zelda, and as I turned that corner, I found myself wrapped up in one of those extendable dog leashes. I hadn’t seen the dog or the people and I registered the scene in my head as a typical RP moment that I can pull up when I get those feelings of fraudulence.

I have only used Z once during this week of hiatus, but in truth, I have barely gone out, with the exception of walking the dogs.  I do take her with me on dog walks, but she just sits comfortably in her holster.  My dogs meander all over the place on our walks, getting tangled and pulling in opposite directions, so I am pretty sure that Zelda would just get caught in the chaos.  In some ways, the dogs do provide a barrier for me; they alert me most of the time if other people or dogs are approaching.  Perhaps I am being just slightly reckless, but someone has to walk them and I am perfectly capable of doing it.

Anyway, I digress.

I did go to my Dad’s house one day this week, and of course had Z with me.  I have her with me now, whenever I go out.  Joe took me there, but I had to catch the bus home.  My Dad dropped me off in Westwood so I could avoid waiting for two busses in the heat, and when I got out of the car, I put Z to work.  I walked with her through part of the UCLA medical plaza and used her on the stairs.  I still feel very pleased to see people make room for me when I am walking with the cane; it relieves my anxiety and plants seeds of a new kind of confidence.

When I got to the cross walk, I decided to rely on Zelda entirely and consciously forced myself away from my old habit of staring at the ground to make sure I wasn’t going to trip on the curb.  I pulled out all of the techniques that Tamar taught me, except for flagging the cane; I am just not ready to do that.  I was feeling pretty good about myself, crossing the street safely and anchoring my cane at the opposite curb to make sure that I didn’t  fall, and then it happened; Zelda’s first contact with a stranger.

He came out of nowhere, of course; everything comes out of nowhere when you have RP.  He must have been rushing down the sidewalk and then all of a sudden, I move Z to the right and she connects with his foot.  I didn’t hit him hard; I am not an aggressive swinger, but I felt relieved that she found him before I got in another collision with an impatient stranger.  He barely paused and didn’t acknowledge what had happened, but I was actually pretty excited about having an encounter which defines a big part of the reason I am learning to use the cane; I got to feel Zelda working for me exactly as I needed her to.

Feeling pleased and a bit nervous, I crossed another street to the bus stop and waited with Z still unfolded.  This was a first; I usually fold her up when I get to the bus stop.

I have had a few firsts in the past couple of weeks; fairly small and subtle, but firsts just the same.  I finally took Z with me when I was out with a friend. My stepmother saw Z for the first time.  The girl we see most often in our local pet shop was there the last time I went in with Z and I had my first chance to explain why I was using the cane, and I ran into(not literally, thanks to Z)another one of our neighbors while I was out walking with Zelda.

I am ready to resume my lessons with Tamar and I am glad to have had this week off; I think we both knew I needed a break.  I also had to get in an application for a writing fellowship that will hopefully help me transform “Stories from the Edge of Blindness” into a proper book.

This week, Tamar comes to my house so she and Z and I can stroll around my neighborhood.  I also joined the gym – again – after having to admit to myself that it isn’t safe for me to go hiking alone, even though it is my preferred form of exercise.  Zelda in the gym is going to be a huge first; I wonder how all the beautiful, young, fit hollywood types are going to handle a chubby, middle-aged, tattooed blind lady.  Should be interesting.

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.

 

#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.

Eyes on Fire

At the end of my last post, I left you in the hallway after leaving ERG hell, and my eyes were useless……

The light in the hallway was incredibly bright, an assault on my dilated pupils, but all I saw was brightness through a haze. I put on my sunglasses and my hat, but the light was still unbearable.  I knew I was going to have to use Zelda to help me find my way up to the lobby and outside to meet Joe.  I didn’t hesitate; I unfurled her, got into position (holding her grip in handshake position, right arm extended out at the middle of my body), swept Z out to the left and took a step with my right foot.  I felt confident and walked down the deserted hallway at a pretty good pace. I had a visual reference from when I had come down to the basement for the test, so that made it easier to get back to the elevator.  All I could see was white, like I was in one of those asylum rooms that are in the movies to emphasize the crazy in a person or a scene.  I felt so grateful to have Zelda with me at that moment.

Every time I use the cane, I feel more confident and become more familiar with her nuances.  I can now actually imagine how it will feel when she is an extension of me rather than a marker of my disease.  I feel myself easing into a rhythm with Zelda.  We made it up to the lobby and out the front doors to wait for Joe in a shady spot.

Even from the shade,the sun was more painful to my eyes than the light in the building, so I kept my eyes closed, leaning on Zelda for support.  Joe had parked the car in a lot 6 winding blocks from Jules Stein Eye Institute and we were going to walk back to the car together.  When I opened my eyes to take a peek and see if Joe was coming, I saw him walking up the ramp.  I couldn’t help but wonder if it made him sad to see me there with Zelda, but he actually seemed proud of me.

The walk to the car went well.  I had Joe guiding me expertly on the left and Zelda in my right hand, so I was well covered.  My eyes had begun to sting pretty severely, so I kept them closed for most of the walk, thinking it was the sun that was causing the burning.  It was the first time I felt somewhat relaxed being out with Zelda .  Of course Joe was with me and he always gives me confidence and a sense of safety, but I was still really happy with the way I felt and the flow that I had with Z.  I felt progress and that felt good.

By the time I got into the car, the burning in my eyes was almost unbearable and I discovered that it was actually worse when they were closed.  So, I opened my eyes, but hunkered down under the huge brim of my hat to protect my still dilated pupils from the sun.  There was no relief and rubbing my eyes only made the burning worse; but I was compelled to rub them to try to force the burn out. Nothing helped and I started to panic.  It was a very long 40 minute ride home.

When we finally arrived at our apartment, I rinsed my eyes with an eye bath solution, but this only provided relief for about two minutes.  I tried to rinse with cold water, but that intensified the burn.  I was exhausted and just wanted to go to sleep, but closing my eyes was not an option.  I paced around my house and bathed my eyes every ten minutes, but the burning continued.  Then, I started to feel a sandpapery dryness under the burning.  I was freaking out.  The ERG was torture enough and now it appeared that it would continue for hours.  It did.  My eyes didn’t start to feel better until about 10 pm that night, 7 hours after the ERG.

When I woke up the next morning, there was a weird crust all around my eyes, but the burning had stopped and my pupils had gone back to normal (RP normal anyway).  I really hope I get at least another ten years before having to enter ERG hell again.

 

#4 Mourning

O&M lesson #4, still within the comfort of the Braille Institute;  I am not quite ready to start working outside with Tamar and Zelda, and anyway it is bloody hot here in Los Angeles, so the more time in the a/c, the better.

As usual, the lesson began with Tamar and I having a chat.  I am incredibly grateful for this time she gives me to check in about my feelings and my progress. I told her about my one day of practice (refer to previous post) and my feelings surrounding that day.  She told me that it is important that I give myself a chance to mourn; that if I don’t, the emotional stuff will keep owning the process and I will never get truly down to the practical work that is going to make my life more manageable.  One of the most difficult things about RP is that you mourn over and over again; each time you loose more vision or your vision loss dictates changes in your life.  It isn’t a constant state of mourning, but every time I grieve, the process breaks off pieces of myself that I can never get back.

I have been feeling down for weeks and pushing away the reality of why, telling myself that I have no reason to feel depressed; Tamar helped me get to a place where I can acknowledge the depression and the validity of it.  I am mourning the loss of my life before Zelda, when I could walk in the shadows quietly and tell only those I chose to tell that I am going blind.  I am mourning the vision I have lost over the past year.  I am mourning the loss of my secret and the power I had to keep it.

It may sound crazy that I believed I had a secret; I write this blog and have done for years.  I share my story with whoever wants to read it.  But, I still felt clandestine in my everyday life; I held onto the power of how or when or even if  I revealed my blindness to those who touch my physical world.  Perhaps it was my way of hiding from my own disease or of avoiding having to get down to the bones of the grief.  Now, I give gravity and respect to my feelings and I finally understand how doing so will help me move on with Zelda in hand.

Of course, Tamar and I did more than just chat, but the talk helped me immensely; it is strange how, although I am the one who is blind, she seems to know more about it than I do.

After our talk, we returned to the dreaded stairs.  We worked on the short flight for a while and I definitely got more confident, but the stairs up to my apartment are very different; a lot more of them in a narrower area.  So, Tamar took me into the stairwell.  It was an area of Braille that I had never seen before, so I had no visual frame of reference and no idea what to expect.  I closed my eyes, Tamar pointed me in the right direction and Z and I were off.

We got to the top of the first landing and Tamar instructed me how to use the cane and then also my hands to feel along the wall, around to the right and to the next flight of stairs.  We went up three more flights and then turned around to come back down again.  It was disconcerting and I was nervous, but it gave me a huge sense of accomplishment.  I relied on Z during that exercise more than I ever had, which means I was relying on myself in a whole new way.

At the end of the lesson, I felt better about the stairs and better about my feelings and much more ready to continue this process in exactly the way I need to.  If it means I isolate for a while and put the majority of my effort into this new adventure, then that is what I will do, without apology or excuse.  Because this blind thing, this RP thing, this white cane thing….it is a big deal.

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