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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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Vision Loss

4 Years

Today is the 4th anniversary of my brother’s death.  He has been on my mind more than usual this week and I woke up this morning feeling like it must be impossible that he has been gone so long. I can’t believe that I am now the age he was when he died. Where have all the days gone? I miss him so much. I really could have used my big brother’s advice with the whole Zelda thing (Zelda is my white cane).

John(that’s my brother) was sick on and off from the age of 18 until his death at age 48.  He knew more than most what it meant to feel different and defeated, but he had a determination that I have rarely seen.  We weren’t close as kids; I was the one who swooped in and usurped his title of youngest child, and he had absolutely no use for me, but in the last years of his life we had truly become friends.

We both loved Harry Potter and saw almost all of the movies together.  While waiting in line to see “The Half Blood Prince”, a group in front of us kept growing; people coming into the line gradually to join the two girls who had been there from the beginning. John and I had been there for about 4 hours ( we were dedicated), and John was not happy about all the people arriving late and essentially cutting in line.  When the line finally started moving, the now pretty big group ahead of us had to gather their blankets and backpacks and purses, so John grabbed my hand and raced up to get ahead of them in line.  One of the girls had the nerve to call us out on it, so John turned around and told her that she had joined the line late and we had been there the whole time, so tough shit. She replied by saying that everyone one was doing it, and John said,” If everyone jumped off a cliff, would you do that?”.  It was a wonderfully old man kind of thing to say and I loved him for it.  I loved watching him stand up for us.  I wish he was here so we could reminisce about that day.

Maybe two or three years after my RP diagnosis, I was feeling sorry for myself, lonely and misunderstood, and I made a comment about how no one in my family could possibly relate to what it felt like or what I was going through.  Later that day, John came to sit with me at the dining room table and told me I had hurt his feelings by what I had said, because he understood.  He understood what is was like to feel loss, to feel afraid and different and alone.  I knew in that moment that neither of us were alone.  I learned in that moment what it meant to be brave. I saw in that moment how much John had been teaching me all along, about strength and kindness and honesty.

I am lucky that John was my big brother and so grateful that we became close and that I really got to know him, but I wish he was here so I could tell him how amazing he was and how much I miss him.

 

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.

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.

 

#8 Blindfolded

Tamar and I got right to work today.  I had a pretty good week with Zelda and I was running late this morning and screwed up Tamar’s schedule a bit, so no need or time for a therapy session; I also think we were both trying to avoid getting me too anxious about what was to come.

When I saw Tamar coming up my walkway, I noticed she was holding a surgical mask – aka blindfold – and I knew she hadn’t forgotten what she promised the week before; perhaps I was very slightly and secretly wishing she had.  She smiled and asked if I was up to it; she is always respectful and asks how I am feeling, but doesn’t let me get away with backing out of things she knows I can handle.  I was ready.

We walked to the south end of my driveway and she handed me the blindfold.  Before I started walking, we had an exchange that was so subtle, but empowering for me.  I asked her to hold onto my sunglasses while I put on the blindfold and after it was secure, I opened my purse, found my sunglasses case, asked her for my sunglasses and put them away.  I know it sounds insignificant to simply put one’s glasses away, but the fact that Tamar just let me do it without trying to help or take over made me feel competent.  Before I took a step, I had begun to feel confident that I could navigate the world without the use of my eyes.

When the blindfold is on, I always close my eyes; I can see light coming through but no images, and it makes me feel calmer when my eyes are shut.  I surrender myself to the experience, relax into the darkness and try to allow my other senses to tune in.  It is really a sort of meditative process.

After the blindfold is secure and my eyes gently closed, I take a breath and then a step.  Tamar tells me to stop.  We are in-between my driveway and the driveway of the building next door. She asks me to listen.  Do I hear cars?  The garage gate opening? She asks me to feel with my feet.  Do I notice the ground beginning to slope downward?  And of course, to feel with Zelda.  What is to the left and right of me to indicate we have come to a driveway?  The end of a grass line or wall?

I listen.  I hear cars, but they are behind me on Sunset; not close enough to be a danger.  The gate is quiet and there are no cars moving parallel to me.  I feel with my feet.  As I approach the driveway, the ground slopes slightly downward and my ankle pivots to adjust to the change.  I put Z to work, swinging her to the left and to the right.  She alerts me to a low metal wall on the right which I know indicates the north side of the driveway of the building next door.  She also lets me know that the ground level has changed.  I determine it is safe and we move on.

We are taking the same path as the previous week, and of course this is my neighborhood so I have a mental map of the terrain, but without the use of my eyes, the experience is completely different.  Using Zelda, I get a much better feeling for exactly how wide the side-walk is.  I know that there is grass on either side of me as I pass the building next door, but now I feel the contours of how and where the grass lines begin.  In some places, the grass sits above the sidewalk and in others it sits below and creates a subtle drop off; when I am using my eyes, a subtle drop off can have me flat on my face in less than a second.

We continue down the street, past more driveways and buildings.  At one point, I hear someone get out of a car, so I stop and listen to both what the car is doing and in which direction the person is going.  The car drives away and the man ( I know it is a man because I can hear him talking on his phone) crosses my path and proceeds up the stairs on my right.  I know he is walking upstairs because I can hear the change in his footfalls.  It is incredible; most of us have heard people on the stairs, but it is as if I was hearing the stairs themselves; the way they received the weight of the man and the material from which they are made; solid concrete that responds with dull recognition to the mans feet.  We walk on.

We are about two-thirds of the way down my block; I know this because I can hear the cars on Fountain Ave. more distinctly.  We cross more driveways, feeling the dips in the sidewalk and we encounter trash cans that have been left out and a couple of times I veer too close to the street and Z let’s me know by alerting me to a parked car.  We pass a friend’s house with tall hedges in the front and I know we are just one building away from the intersection.  I slow down, considerably, and Tamar tells me to keep going, trust Zelda.  I continue to walk, hearing the cars on Fountain as if they are inches from me, and then Zelda dips down abruptly and I know I have found the curb.

Tamar asks me to listen to the traffic and position myself so the cars are to my right, running parallel to me.  She says I should hear them at my shoulder.  I put myself in the right direction and again head toward the curb.  Zelda let’s me know I am there with no problem and I do my A (anchor) B (staying behind Zelda) C’s (check it out); I find the edge of the curb with my foot and test the depth with Zelda and then I stop again and listen.  I am listening to find out if my parallel cars are moving or stationary,  and for the presence of a possible right turner.  I know the light is green when my parallel cars are moving past me, so I flag my cane and proceed across the street.  Half way across, I hear something I never hear at a moderately busy intersection, or even on a quiet street; I hear a Prius.

When I am out with just my eyes and no Zelda, I am on constant look out for all Prius type cars.  They creep and sneak and barely make a sound; or so I thought.  I heard the Prius today as if it was as loud as any other car. It was such a distinct sound from all of the other traffic, like a voice joining an orchestra with pristine timing.  It turned left and raced over the cross walk in front of me.  I will fear the Prius no more.

Tamar and I continued down a small, narrow stretch of Fountain Avenue.  Zelda alerted me to low walls, telegraph poles, and the curb when I veered too far to the right.  When we got to the next crossing, I got myself positioned, waited for the surge of parallel traffic, flagged my cane and got on my way.  At the other side, Z found the curb where I did my ABC’s, made sure the path ahead was clear of poles, furniture, sleeping men and garbage cans and stepped up onto the curb.  Tamar didn’t have to give me a prompt this time; I listened and positioned myself to make sure the traffic was to my back and knew I was heading North on Martel Ave.

I was feeling in a groove; nervous but happy.  I was actually having fun discovering how amazing all of my other senses can be, and feeling a heightened confidence in Zelda.  Martel is the street with the crazy, colossal mountain of broken, raised and dipping sidewalk (all in one small area), and I knew it was coming up soon.  I wasn’t nervous; I think I may have actually been looking forward to it.  It wasn’t because I had done it the week before, but because the anxiety of having to use my eyes wasn’t there.  I knew that I could trust my feet and my ears and Zelda, so much more than I can trust my eyes.

I made it across the mountain obstacle and up Martel to Sunset Blvd, where I veered to the right at one point, toward the curb and traffic, but Z let me know and I corrected my position and walked on.  I apparently have an unfortunate tendency to veer to the right, but with Zelda to warn me of what’s ahead, I can deal with it.  During all of this, Tamar didn’t once try to pull me out of harms way or shriek in fright as I neared a potentially dangerous area; she just trusted that I could do it and let me do it.  Of course I know that she would never let anything happen to me, but I know that she has faith in my ability to make it through this and that helps me believe it as well.

Tamar asked me how my anxiety level, when I was blindfolded and with Z, compares to being out with just my eyes to assist me.  I realized the difference is astounding; it is as if all the stomach tightening, teeth clenching fear and distress are pulled off my back when my eyes don’t have to be in the picture.  I was nervous and, at times, wary; but not once did I stumble, trip , fall, stub my toes,  injure myself or crash into anything. I think I may be warming up to this white cane thing.

 

 

#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 Clear Handle

Today I feel like I am failing; with O&M training and Zelda.  I keep waiting to feel natural with Z, but instead I feel awkward and so far away from the reality of what she means to me and to my life.  I can’t get a clear handle on why this is so hard for me; what about me lacks the ability to just get on with it?  It is as if any courage I had has been slowly peeled away, the layers brittle and dusty, collecting in my blind spots.  My health is deteriorating as I gain weight at an unprecedented rate; it is as if I am creating a barrier, but I can’t see what that barrier will protect.  I have distanced myself from the good habits I had been honing before the O&M started; I stopped meditating and exercising.  I am at once consumed by the changes in my life and doing everything I can not to face them.  I think that would make anyone feel a little bit nuts.

Today,  I got off the bus at a pretty sketchy corner, many blocks from my usual stop, but I was determined to use Z for my entire walk home.  I felt like I was going through the motions and not really using her to my advantage.  I find myself falling back on all of my old coping habits, not trusting that I can use Z to my benefit.  I know that I don’t practice enough.  I know that six weeks into my lessons, I should probably be using her every time I am out.

As I was writing that last sentence, Tamar texted me; perfect timing.  I was texting with her and started to cry and realized that I have been thinking about all of this blind, Zelda, white cane stuff and I have been writing about it, but I haven’t really allowed myself to feel it.  I have been a bit down and I have been isolating myself, but I haven’t cried or truly mourned.  I have thought about what it would mean to mourn, but I haven’t done it.  So, Tamar is giving me a week off so I can do the feeling part of this is a way that will help me get on with the walking out in the world with Zelda part.  I can’t believe that I hadn’t cried about this; I cry about everything.

I am crying now, and that is a good thing.

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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