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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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retinal disease

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.

#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.

 

Ode to RP

Wildflower Muse  published my poem, Ode to RP, last year.  WM is a beautiful online magazine and I am proud to have had my work published there.

I am reposting this because I feel like it is still and will always be relevant in my RP story.

My next O&M lesson is on Wednesday………

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.

 

ERG – Take 2

The day of my RP diagnosis was filled with different tests, including an ERG (Electro Retina Gram), which tests the retinas response to light.  It was by far the most grueling of the tests that day ( I wrote about it in another blog post when my blog was brand new), but I was lucky because I didn’t have to have another one…..until yesterday.

I have to say that this time, the ERG was much less traumatizing, both because I knew what to expect and because the woman administering the test was compassionate and friendly (the opposite of my first experience).  Don’t get me wrong, I was still freaked and the test still seriously sucks, but a friendly and competent tech makes a huge difference.

For those of you not familiar with the procedure of the ERG/Dark Adaptation test, let me give you a run down. After your eyes have been numbed and dilated,  you have to sit in a completely dark room for 30 minutes; and I mean completely dark, like the woods in the middle of a cloudy night with no moon dark.  The idea is that 30 minutes will be enough time for your eyes to adjust as much as they can, which with RP is pretty much not at all, as most of us have night blindness.  I sat there in the room trying to meditate and, every few minutes, I put my hand in front of my face to see if it was becoming any clearer.  It never did.  The first time I went through the 30 minutes in the dark room, I was terrified and crying; this time, I was more contemplative.  I kept my awareness on the darkness itself; it was as if I could see inside of it.  It felt like a web around me and was at once suffocating and endless.  I was more curious about it than afraid of it.

After the 30 minutes went by, the tech came back into the room, through a special door, between the outer room and the dark room, that prevented any light from entering.  It is very important that the first part of the ERG be in darkness; hence the dark adaptation portion. And, then the real fun began.  First, she gave me some more numbing drops and while they were doing their thing, she attached an electrode to my forehead and started prepping the discs.  Plastic discs (they call them lenses) get inserted between your upper and lower eyelids to prevent you from blinking and ensure your eyes stay as open as possible during the test.  The first pair of lenses she tried to insert (the one’s for grown ups) were too big.  She left the room and came back with pediatric lenses; also too big.  What the hell, I thought.  I know I have tiny eyes, but they are bigger than a babies eyes.  She came back with the smallest lenses and those, finally, went easily into place.  She told me that I required the smallest lenses because I have high cheekbones, like Cindy Crawford.  I think she was just being nice, but I was grateful that she didn’t try to force the grown up lenses between my lids.  It became clear to me that the first ERG tech had forced the larger lenses and that must have added to the horror of the whole thing.

To insert the lenses, she asks me to look down while she pulls my lashes and upper lid open, placing the disc first into the top part of my eye and then into the lower.  She then attaches electrodes to each of my cheeks and tapes the wires into place.  The room is still dark and I still can’t see a thing, so I turn my chair to where I think the testing device is (turns out I got it right) and she guides me toward the chin rest.

The testing device is a big dome with the chin rest at the opening.  At the back of the dome is a red light; she asks me to try and stay focused on the red light; it is the first light I have seen in an hour.  Then the test begins.  For the first part, the dome remains dark.  Lights shoot toward my eyes about five or six times, then stop and then start again with varying intensities.  There are about 6 rounds of flashes in the dark and then she turns on the light in the dome.

It is an insanely bright light.  And remember, my pupils are dilated, my eyes are being kept open so I can’t blink and I have increased light sensitivity even when my pupils haven’t been dilated (another perk of the RP).  This is pretty much my worst nightmare. The tech tells me I have to wait five minutes to adjust to the light. My eyes are in agony.

The first sets of flashes are, like the ones in the dark, about five or six seconds a piece, but this time, I have to wait 2 minutes between each set.  My eyes are burning and stinging and the lights in each set increase in brightness and speed and each 2 minute waiting period feels like two hours.  Thankfully, the tech talked to me and kept me aware of the time; she was really sensitive to how I was feeling.  She knew what was coming.

They save the best for last.  The final two sets of lights are successive and last about ten seconds each.  The lights are like frantic strobe lights that shoot at your with a force of brightness that takes your breath away.  The very last sequence was so intense and painful that my lower lip and chin started to spasm.  Ten seconds of pure hell.

The technician was pretty quick, thankfully, to get my face out of the dome and the lenses out of my eyes.  Then, she rinsed each eye a few times with a really cold saline solution and told me my pupils would be dilated for at least another 2 hours (I knew it would be more like 4) and that my eyes may feel a bit dry and scratchy for a few hours after the numbing drops wore off.  She led me to the door (she was a good guide, by the way) and I stepped out of the nightmare and into a bright blurred hallway.

I couldn’t see a thing.  Luckily, I had Zelda.

#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.

A Cane in the Hand

On the bus ride across town from my Dad’s house to my apartment, I took Zelda out on the bus and kept her in my lap as I listened to a history podcast.  As people got on the bus, I watched them look over at the available seats next to me, notice my cane and then head away toward the back of the bus.  I didn’t feel like I was being rejected or ridiculed, more like being given space.  I think when the seats reserved for elderly and disabled people are actually occupied by the elderly and disabled , other people tend to remember what the seats are actually for. Or, maybe my tattoos make me look intimidating and that is why people steer clear.  Flowers and butterflies can be super scary.  I am fine with it either way.

About half way home, I decided to keep Z with me when I got off the bus, rather than stowing  her away in my backpack.  It would be the first time I walked through my own neighborhood with my cane actually in my hand.  I kept her folded up and just held her, but even folded up, a white cane is pretty visible.  I got off the bus on Sunset and didn’t see anyone I knew in that first half block before turning down my street. I was aware of feeling more attuned to noises around me, more on edge, as if waiting for someone to say something.  No one did.

I turned right onto my street and didn’t see anyone out walking besides me; it was a particularly hot day.  Then, I came to an alley and saw my neighbor Bernardo walking toward me with his dog Stormy.  He got an immediate look of surprise on his face and asked me what I was doing with the cane.  I explained a bit about RP and pretty nonchalantly told him that it was all ok, just time to start learning how to use the cane. Most often, I feel like it is my responsibility to help other people feel more comfortable with my blindness. It is partially to make them feel better and partially to avoid too much attention around  the whole what is RP and how sad for you thing.  Bernardo was a good person to run into during my first Hollywood trial run with Zelda.  He listened attentively to my brief explanation, was appropriately sympathetic to my plight, and then we started talking about his family and the dogs and my family; just regular stuff.  The whole conversation ended up being more about him than about me or the cane, and that was exactly what I needed.

I feel as if I am on the slowest course imaginable when it comes to Zelda.  People may be thinking, just take the fucking cane out already and walk down the street and who gives a crap what people think; but, it isn’t that simple.  It isn’t that I am concerned with ridicule or that I care what people think of me; it is more that I am scared of being seen differently by people who know me but don’t know about my RP.  I am afraid that I will cease to be the woman they thought they knew and become the blind woman with the big white cane.  I am afraid that I will be lost to Zelda or that who I am will be usurped by her presence in my life.  So, my steps down this road are slow and small, but I am taking them and I am allowing myself to feel proud of each one.

 

Lesson #3 Entirely with Zelda

I think I was on a bit of a cloud during my first two sessions with Tamar.  I was so proud of myself to have taken such a big step, impressed with her, safe with Joe there at the second lesson and feeling generally positive.  That changed.  By the third lesson, I began to question why I was learning to use the cane at all and feeling incredibly exhausted and overwhelmed by the whole process.  I have an unfortunate tendency to lose hold of the reality of a situation by trying to convince myself that it is all positive, and then,  everything that is difficult or challenging about whatever I am trying to do comes crashing around me. I have often just given up.  This time, I am not giving up; I can’t.

I sat in the lobby of the Braille Institute with Tamar for a while on Monday, wondering what I was doing there; why do I need to learn to use the cane when I can see my teacher showing me how to use it.  But, of course I know why I need to learn; it’s because RP is a total mind fuck.  I see and I don’t see; I have no idea what I don’t see, but what I see fools me into thinking I am seeing more than I actually see.  Do you see?  Total Mind Fuck!!!!!!!!

I watched all the people who had canes and couldn’t see me watching them and I felt like a fraud.  This is what RP does and it is really dangerous.  I am blind and I do need help and I do need the cane; the sooner I can embrace all of that fully, the sooner I will be able to relax and really let Zelda be a constant companion. I was also nervous because I knew that lesson #3 was going to be entirely with the cane.

I felt better after talking things out with Tamar; a little more justified, a bit calmer and also grateful that I have resources like the Braille Institute.  It was time for Zelda to come out of hiding.  First, we went into a quieter part of the BI where there is a long hallway and I walked up and down the hallway, using Zelda for safe passage.  I learned about more methodical scanning techniques and about different ways to actually use Zelda.  I can sweep her back and forth, or tap her from side to side or simply hold her in my left hand, when I am not using her, and allow her to glide in front of me.  I am having a tough time getting the 2 to 10 sweep and always end up too far to one side or the other, but I have the footwork down pretty well.  The thing is, if I am not maneuvering the cane in front of me in the proper way, I am at risk of missing a lot of what is in front of me, or unintentionally assaulting strangers.  I am going to have to practice at home.  I suck at homework.

We must have been in the hallway for close to an hour and then it was time for the stairs.  I wasn’t blindfolded for the stairs, but I did have to keep my eyes closed while I was practicing the steps Tamar taught me.  I won’t give you a detailed list of her instructions, but just know that there are a lot of them and I am not sure I even remember them all.  I was anxious and scared and wanting to be a good student.

Going up the stairs isn’t too bad; it does take some practice and there are specific ways to do it safely, but I didn’t feel particularly afraid doing it; just a bit bumbling at times.  Going down the stairs is a whole other thing.  It is super scary.  Have you ever had one of those dreams where you are falling and as you begin to plummet you wake up and your stomach drops?  That is what it feels like the first time you find the top step with your cane.  The lead up is like the steep climb of a roller coaster, except you have no idea when the drop is coming. The first time I found the step, I started just a few feet from the stairs, but it still took my breath away when Zelda dropped down into nothingness.  Then Tamar asked me to find the stairs from farther and farther away; this didn’t alleviate the anxiety, just prolonged it.  At one point, she led me around to disorient me, so I would have no idea how far from the stairs I was, and then pointed me in the right direction.  I learned that I have an annoying tendency to veer to the right as I am walking because I  apparently swing the cane too far to the right.  So much for being a graceful dance partner for Z.

We worked on the stairs for over an hour and I don’t think I relaxed for one minute.  I was stiff and exhausted and I couldn’t imagine how I would get through three months of this.  I can’t explain why, but for some reason, during this third lesson, the shit got real; maybe because it was finally a lesson entirely with the cane or because I experienced a new kind of fear around my blindness.  All I can say is that this whole blind thing is really hard; it isn’t impossible and I know during my lessons there will be ups and downs (literally), but it is a typhoon of emotions and experiences that I have no choice but to meet head on.  I am sure, however, that I will do it in my classic stubborn way.  I keep forgetting to take Z with me when I go out and I haven’t used her once since the lesson on Monday.  Perhaps this is my rebel week.  I will have to come clean with Tamar next Monday.

Mobility Training – Day 2 – Good Guide/Bad Guide

Today was my second lesson with Tamar and my husband Joe came with me to get some lessons of his own on how to be a good and helpful Guide Person.  I don’t know if Guide Person is the right terminology, but I think it works so I am sticking with it.

I don’t think Joe was particularly anxious about the lesson today; he has pretty much been my guide for 9 years, but I was looking forward to him learning some of the techniques that Tamar taught me which I find super helpful.  Tamar was really warm and enthusiastic on meeting Joe(no surprise), and they started joking with each other right away.  I think they are both really good at taking the nerves (mine, in this case) out of a situation.

We started with me and Tamar giving Joe some examples of the techniques used in being a guide, and the importance of what Tamar calls VP (verbal and physical prompts). She first approached me without saying anything and grabbed my arm in an attempt to help me, so I could grab her hand and take it off my arm (an example of what not to do as a guide).  She then approached me, said hello and asked if I needed help (verbal prompt), then put the back of her hand against mine so I could find her elbow (physical prompt), and off we went.  We showed Joe the physical prompt for entering a narrow passageway (hand behind the back and I hold onto the guides wrist) and the information a guide should give about things such as doors (we are coming to a door and it opens to the right) or stairs ( we are coming to a flight of stairs going up and I am at the first stair).  Tamar guided me to a chair, told me I was in front of the chair and put my hand on the back of the chair so I could sweep the seat, find the arms and know I was sitting down correctly by making sure the backs of both my knees were touching the chair before actually sitting.  And then it was Joe’s turn to be guided by Tamar.

Like me the previous week, Joe was given something to cover his eyes and he couldn’t see anything but a bit of light coming through the blindfold.  He was going to have to put his trust in his guide; lucky for him, his guide was Tamar. It was an emotional  experience for me to watch Joe in the position I had been in with Tamar and that I am in more often than anyone knows.  Even Joe, who sees more than anyone how much I don’t see in my daily life, can’t know how limited my vision truly is.  It made me think about a night when we were leaving the Hollywood Bowl, being swallowed up by a crowd of hundreds, and I was terrified.  I kept trying to hold onto Joe the way Tamar taught me, but he hadn’t had his lesson yet and was just trying to get us through the crowd the best and quickest way he could.  I remember one particular part when I thought we may be approaching stairs and I asked him to find another way; I was afraid to attempt the stairs with that many people trying to rush through such a tight space.  I, of course, didn’t have Zelda with me because I wasn’t ready to take Z out in the world at that point.  I was just another seemingly fully sighted woman trying to get out of a giant fucking crowd.

When Joe held onto Tamar’s elbow and assumed what is usually my position, it was hard for me to see him so vulnerable and made my own vulnerabilities rush to the surface. I wondered if he was feeling a bit of what I felt when Tamar guided me for the first time, or if he was experiencing some of the sensations I experience on a daily basis.  Tamar guided him all around the BI and I followed behind them.  I saw him get anxious about the stairs, just as I did and do every time I come to a set of unfamiliar stairs, just like that night at the Bowl.  I watched him feeling triumphant once he got the hang of the stairs.  I watched him put his trust in Tamar, the way I put my trust in him every day.  It made me love him even more. He wasn’t just helping me by being supportive, but being brave enough to put himself as much into my shoes as he could.

When it was Joe’s turn to guide me, I felt pretty confident that he was going to be a good guide, but I also knew that Tamar would ask him to be a bad guide so I can learn to pay attention to things a not so great guide may fail to say or do.  I also knew it would be a bit of a challenge for Joe to guide me while letting me play my part.  Tamar equated the guide and guided relationship to a dance; each partner has their part to play or steps to take.  It takes practice to move through the dance smoothly, but Joe and I are a good team, so I knew we would be sailing across courtyards and down stairs in no time.

We started with going in and out of doors, which we tackled with at least a modicum of grace and the more we did it, the smoother it felt. Then, he guided me back inside and down a ramp, where Tamar stopped us and asked me if I had Zelda, which of course I did, but she was hiding in my backpack.  She asked me to get her out so I could learn how to hold my cane while I was being guided.  Joe helped me get Z out of her hiding place and I unfolded her like a total spaz ( I am sure Joe and Tamar had to duck out-of-the-way), but Tamar assured me that we would work on that during our next lesson; probably mostly for the safety of those around me.

We continued down the ramp and Tamar instructed me how to hold onto Z and utilize the hand railing at the same time.  When Joe and I got to the stairs, I held the cane between my thumb and Joe’s elbow, freeing up my right hand to use the stair railing.  We did the stairs (quite well actually) a few more times and then we went back outside and, for the first time, I was using my cane outside.  Through Zelda, I felt the textures of the ground and the cracks in the pavement.  When Joe was (by instruction), being a bad guide, Z showed me when I got to doors and to stairs.  Everything Tamar had taught me about using the cane correctly, I am sure, flew right out the window, but I still felt great that I was actually outside and doing it and feeling it.  I was engulfed by feelings of liberation and in those moments, the feelings of anxiety crept into the background.

As I anticipated, Joe was a great guide; so good, that it was hard for him to be bad when Tamar asked him to.  One time, while practicing with the doors, he let me know that he was going to be a bad guide, which of course let me know that we were coming to an obstacle.  It was great that during this thing that is overwhelming and stressful and emotional, we can laugh and have a good time together.  I am so grateful that Joe is the one standing next to me (or a couple of steps in front of me, as a good guide does) through this and all things.

I keep returning, in my mind, to Tamar’s description of all of this as a dance.  There are so many steps to remember and when I am so focused on one step, I will sometimes forget the others or stumble or even fall, but I am glad that I am learning and I know that one day the dance will be beautiful and seamless and I will move through the world again with confidence.

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