Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.



#11 On our Own

Two days ago, I was visiting my Dad, and my StepMom got really sick.  So sick, we had to take her to the emergency room. She is totally fine now, but in the chaos of getting her to the ER, I left Zelda in my Dad’s car and haven’t been able to get there to pick her up.

I have to admit, not having Z the past couple of days has felt like a relief.  I got to go out and do errands at my own pace; of course my anxiety level was at an all time high, but I didn’t feel weighed down by the cane and at the time it felt like an o.k. trade off.  I started to feel like I might just retire her to an obscure hook in my closet and hope for the best when I go out walking.  But, then my husband interjected his usual wisdom.

Joe compared my not using Zelda to an insecure person continuing to drive when they know they should stop (which I can, of course, relate to, having had to give up driving at 34).  I think that what he was saying, in basic terms, is: everything is ok until it isn’t.  I may feel like being out with Z is fine because I still have usable vision and most of the time I make it back home unscathed, but that isn’t a guarantee.  I have probably had more close calls than I know about, because I didn’t see the car or person or bicycle etc. that I almost collided with.  Fuck….why is my husband always right?

Tomorrow, I will pick up Zelda.

Speaking of Zelda, today was supposed to be my 11th and last lesson with Tamar, but I cancelled it.  I thought it would be silly for me to show up at the Braille Institute to meet my O&M instructor without my cane, and I wasn’t sure until last night that my Step Mom was completely on the mend.  So, I texted Tamar to cancel and tell her that I thought we didn’t really need to meet again; for our previous meeting, I took her out to lunch and gave her a card and was totally prepared to say goodbye, so maybe I needed to stick to my plan and have that be our last meeting.  I suck at goodbyes and I didn’t want to have to go through it all again.  The problem is, I may have burned an important bridge; Tamar never got back to me and I don’t know if she is just busy or pissed off that I cancelled another lesson and told her I didn’t think I needed any more, in a text.  The text was super nice and filled with honest sentiments of gratitude, but perhaps she would have preferred a phone call, or maybe I just totally screwed up her schedule.  I figured she had taught me all I need for now and it was time for a new student to benefit from her skills and knowledge.  I hope that I didn’t completely piss her off, but in any case, my O&M training is officially over and Zelda and I are on our own.


#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.


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.

#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.

Cracks in the Pavement

During the past two days, I have been to the grocery store twice.  Both visits had me feeling anxious and unsure of my surroundings and footing.  I had Zelda in my bag, but I didn’t take her out; feel free to call me a dumb ass.  I did think about taking her out both times, but instead of using this tool which is at my disposal to help me feel more secure and confident, I chose to walk around the store having who knows how many near collisions and feeling totally tensed up the entire time.

Yesterday, Joe was with me, so I had him to lean on if I needed to, but today I was alone and the choice to leave Z stashed in my purse was screaming at me in a different way.  Somehow, knowing that I now actually have something at my disposal which would make my trips to the grocery store easier, makes me feel my discomfort more keenly.  I knew that there was a way for me to alleviate my anxiety and what it feels like when that anxiety actually lifts; this led me to make a different choice on the way home.

I took Z out and unfolded her just outside of the grocery store, then proceeded through the parking lot and down the sidewalk toward my favorite ramen shop.  I wish I had some thrilling thing I could write about, but the walk was pretty uneventful; Z helped me over some cracks in the pavement, I passed a few people walking, and the cars at street crossings were definitely more patient than when I am sans cane, but no spills or bruises or confrontations.

When I got to the Ramen shop, I realized that it was their break hour, but the owner came out and invited me in to place my take out order early.  I folded up Zelda and went inside and he didn’t even look twice at her.  I felt like I broke through some serious ice. Zelda has seen the dirty streets of Hollywood and I am out of excuses.

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.

Mobility Training – Day 1- Down on my Knees

After 6 months on the waiting list, I have finally begun mobility training at the Braille Institute. Although the waiting period gave me time to absorb some of the gravity of my decision to do O&M,  my emotions are running amok. I feel proud of myself for taking this step, terrified of what’s to come and what this step means, and I also feel like a huge freak.  I know I’m not supposed to say that; I’m supposed to be all positive and triumphant and say that blindness won’t get me down, but that is bullshit. The truth is all of it, every emotion no matter how un-PC it might be.   I feel like having the cane is going to put a big freaky spotlight on me and how different I am.  I am also excited about being able to walk down the street with a new confidence, not having to look down at the ground the whole time.  And, I am scared of the fact that having the cane takes my own reality of my blindness to a new level.  But, here I go, into this new phase of my RP journey, with all the dirty, gritty and gorgeous emotions in tow.

My first session with Tamar, the Rockstar O&M teacher, was at 8:30 in the morning and I was half awake, without a drop of caffeine in my system, when I walked into Braille to meet her.  Tamar is amazing; I felt instantly comfortable with her and cared for by her and I knew that I was in the right hands.

She gave me a tour of the BI, much more extensive than the one Jane gave me on my first visit.  She showed me all the classrooms that include music rooms with pianos and orientation classrooms with full scale kitchens and bedrooms.  She took me into the garden and through suites of offices and learning centers for all the cool tech that exists for blind people and a department just for those of us with low vision. The place is a veritable city for the blind and I knew that day it would also become a sort of safe haven for me.

As we walked around the institute and all it’s buildings, Tamar had me stop periodically and listen to sounds or take pause to notice changes in the flooring.  She pointed out the shapes of signs (all tactile and raised) so I could identify them without using my eyes.  I discovered landmarks placed intentionally to orient people, such as wind chimes at the entrance to the garden.  It all seemed so obvious as she pointed it out, but I also realized how much people rely on their sight, treating the experiences of their other senses as almost inconsequential.  As a partially sighted person, I thought I was utilizing my other senses pretty well, but I learned that I am missing more than I knew.

After the tour, Tamar took me back to her office to talk about my vision and the goals that I have for the O&M training.  I told her about my high levels of anxiety in crowds, new environments, and of course in the dark and the bright sun.  I expressed concern about not being able to use the cane because of being woefully uncoordinated and an eagerness to become more confident with the cane and as a result more confident out in the general world.  She told me about even more services that are available to me and showed me amazing apps on the phone; with all the tech available right now, this is a good time to be blind.

I knew it was probably time to stop chatting, but Tamar was great and started me off slow.  She first taught me how to look for things on counters and table tops that I can’t see because of lighting or color or an object simply being out of my limited field of vision.  I sweep one hand over the surface of the table in one direction and move up slowly, always in the same direction and eventually, whatever is lost will be found.  Then it was time to stand up.

I got up from the chair and first, she showed me some safety postures to safeguard my face and body from collision with furniture, walls, people etc.  I can’t tell you how many times I have bent over to pick something up and smashed my head into the corner of a desk, or walked through a doorway too quickly and ended up with bruised arms and hands.  It is such a simple thing to block your face with your forearm stretched to the opposite ear, but it isn’t something I had ever thought about.  Tamar recommended that I adopt this posture every time I bend down to get something; my face is already thanking her.  She asked me to to walk across  and around the room with my eyes closed, adopting the posture of protecting my face with my bent right arm and my tummy and legs with my outstretched left.  I moved slowly and avoided collisions with walls and tables and chairs.  I was scared, but also already feeling more confident.

After wandering the room for a while, she wanted me to work on using both hearing and touch to find things that have fallen on the floor.  I stood across the room from her, my eyes closed, and she threw her keys on the floor near me.  She then asked me to point to where I heard them fall and asked if they were right in front of me or further away.  Then, she asked me to walk in the direction of where I heard the keys drop and bend down (arm protecting face of course) to find the keys using a particular method.  I began in the center of an arc where I believed I heard the keys drop and moved my right hand to the right in a circular motion, making bigger circles as I progressed.  Then I did the same with the left.  I felt lost very quickly and told her I couldn’t do it, but she told me not to give up and that when you think you can’t find something, it is usually just another step or sweep of the hand away.  She was right, of course.  I realized that this whole experience is going to teach me to combat a lifelong problem; I have always given up too easily and too soon.

After a few more attempts at finding dropped keys, Tamar talked about the appropriate methods involved in being a good guide person.  Obviously, I will never be the guide person, but knowing the right ways to do it will help me help other people who try to help me.  I am right handed, so the proper position for me is on the right of my guide person with my left hand on their right elbow, walking a few steps behind them.  She taught me about the importance of verbal and physical signals; for example, when coming to a narrowed passage, the guide moves their hand toward their back in a way that I can then grab their wrist and we can walk pretty much single file with me still being guided; and, please blind people stay at arms length as to not step on your guides heels.  This was all happening in the safety of her office, but I knew that was temporary.  It was time for me to be blindfolded and, with Tamar as my seeing eye person, tour the Braille Institute without the use of my remaining vision.

My first obstacle (or test) was at the door.  Although an exemplary guide will tell you if the door opens to the right or left, Tamar asked me to feel which way the door was opening by paying attention to her body movements and the sounds of the door.  This sounds easier than it is.  The idea is that I learn to gage in which direction the door opens and then take the door from my guide as we walk through the doorway, making sure to tell my guide that I have the door.  We made it through the first door pretty easily and ventured out into the hall.

Tamar guided me over a carpeted floor and asked me to tell her when the flooring changed.  It felt like a ride when we walked down a small hill in the corridor and ended up on tiled floor.  She asked me to stop and listen and tell her where we were.  I heard someone playing the flute (beautifully by the way) and I heard traffic to my right, so I knew we were by the music rooms on the Vermont side of the building.  She led me to doors and asked me to feel the shapes of the designs on them; round signs indicate women’s bathrooms and triangular signs indicate mens bathrooms (at least I hope I am remembering that correctly).  I had to feel the letters and numbers on classroom doors and tell her what they were.  She taught me to glide just the back of my pinky finger across the wall next to me in order to gage when doors appeared or hallways ended.  My senses were alive in a whole new way and I was actually having fun; but of course I was with Tamar (the expert) and in the Braille Institute where everyone is either blind or familiar with the world of blind people.

We continued along the hallway, my hand on Tamar’s elbow and then the carpet changed to what felt like a rubber mat.  I learned that, at the BI, this means that you are approaching automatic doors that will take you outside. The doors opened and I felt a lovely breeze on my face.  I heard the wind chimes and knew we were near the garden.  Tamar then led me in and out of a set of doors in order to practice my newly acquired skill of paying attention to the direction in which the door opens and making sure that I let my guide know when I have hold of the door.  I think I got the door direction right all but twice.  Not too bad for a first day.

We finished the in and out of the door thing and Tamar led me back inside, asking me what I was hearing.  I heard the hum of some sort of machine, perhaps a vending machine, and knew we were in the cafeteria.  Then it was time for stairs; my heart leapt a little.  She told me that a good guide will let you know when you are approaching a set of stairs and stop in front of them to give you a moment to find the bottom step with your foot and the handrail on your right (if there is one).  Following procedure, we made it up the stairs and back down again swimmingly. I learned that the hand rails in public buildings are installed according to the criteria of the ADA; when you get to the last step, the railing straightens out to let you know there are no more steps.  It was something I had never paid attention to before this first O&M lesson. Tamar also gave me the tip to pay attention to your guides body language and placement, because not every guide is a good guide who will tell you when you are at the stairs.  So, we practiced on the stairs a few more times, with Tamar as her true rockstar guide self and a few times trying to be a less then good guide.  As strange as it sounds, the stairs ended up being kind of thrilling.

After the stairs, we headed across the lobby; I knew we were in the lobby because all of a sudden the noise level increased and I could tell we were in a heavily populated area if the BI.  We were almost at the Braille shop.  It was finally time for me to get my cane.

When we got to the shop,  I was at another emotional precipice.  I was terrified that if I went through with it, if I actually bought the cane, the whole fucking blind thing would get real in a whole other new way, again.  I was also excited because Tamar had made the session fun and helped me feel confident. First, we walked around the shop and she showed me all of the amazing things that exist to help the visually impaired in their daily lives; I think she was trying to give me a few more minutes to adjust to actually buying the cane. Then, we arrived at the cane section.  What they have on display is just to give you an idea of options and sizes; the actual canes for sale are in the back.  White canes come in two different materials, various lengths and with different tip options, so Tamar helped me find the right height and material and then it was time to actually buy one.  I was scared.  I was really scared.  I was about to cross a line I had been imagining for years; I felt like I was about to become blind for real. But, I gathered my courage, took out my credit card and signed my name on the bold line.  My cane is a 50 inch graphite with a round roller tip.  Her name is Zelda.

Tamar, Zelda and I went off to a fairly deserted hallway for my first lesson in using the white cane.  Tamar taught me how to hold it correctly and, using my wrist, how to move the cane in a 2 to 10 arc as I walk.  She told me that when I step forward with my right foot,  I should move the cane to the left, preparing myself for potential obstacles on the left before I step out with my left foot. She suggested I use the mental image of kicking the cane out of the way as I step forward. I reminded her again of how horribly uncoordinated I am and I gave it a go.

It was actually kind of amazing.  For the first time in years, I walked without looking down at the ground.  I knew the cane would see for me.  I walked slowly and with a bit of a stiff gait, but I did it and Tamar said I was actually quite coordinated, that most people have a particularly hard time with the opposite step and sweep of cane thing.  I was super proud of myself.  It wasn’t perfect, but it was a damn good start.  We spent the last ten minutes of the session with Zelda and I left in a great mood.  It had been a really positive first lesson.

It has been a week since my first day with Tamar and Zelda.  I have taken Zelda out and practiced with her in the house a few times, and I took her out on the bus once ( I left her folded up and just held her), but mostly she has stayed in my backpack.  I realize that it is going to take time for me to be ready to introduce Z to the world, but I will get there at my own pace.  I will see Tamar once a week for about three months and I am confident that Z and I will be a great team by the time my lessons are completed.

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