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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.

Month

June 2017

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.

Braille and Other Bumpy Things

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After my head on collision with the pillar at Sprouts and months of grappling with fear,  anxiety and shame around the idea of mobility training, I finally went to the Braille institute. The decision to go to Braille, as a patron looking for services, changed the nature of my emotional relationship to RP.  It took me from being an incognito partially sighted person to being a blind person.  Of course I understand intellectually that I have been a blind person for quite a while now, but I was living in both the shadows I chose and the shadows that have been inflicted upon me.  I was making the decision to tell the world that I am blind.

The Braille Institute is huge; it takes up an entire block and houses a library, offices, classrooms, a lovely garden and a cafeteria.  I met with a woman named Jane who has worked for Braille for 12 years, so she was super informed and nice and wore a gorgeous black velvet dress.  As my husband says, people who choose to help the blind as a career are bound to be pretty nice people most of the time.

Jane led me to her office where she would conduct my entrance interview, and although I was pretty sure I wasn’t going to get turned away, I still felt like I was applying for university.  Her office was full of baskets that had been woven by blind art students, elephant sculptures and a gorgeous photograph of an elephant that took up half of one wall.  The lighting in her office was excruciatingly bright.

Jane proceeded to tell me about all the classes I could take; everything from braille and kitchen skills to creative writing and basket making (which she herself teaches).  She told me about government programs that will help me get a job and a ride and tons of different contraptions to help me use what remains of my vision to it’s fullest.  And finally we talked about Orientation and Mobility training; it was my primary reason for being there and I was thinking I would sign up and start right away.  This was not to be.  There was a waiting list and she told me it could be up to six months before I could start learning to use the cane.  I didn’t really mind the wait; I figured it might give me time to get used to the idea of bringing a white cane into my life.

At that point, I was feeling pretty good, wanting to avail of the services offered to me and be a part of my blind community, so I signed up for a support group, a crochet class and a creative writing class that I could start attending the very next week.

After my meeting with Jane, we retrieved my husband from the waiting area and she took us to the library; it is two floors of audio and braille books and even a small section of large print books.  I was issued a machine that plays audio books specifically made for Braille Institute and given information about an app called BARD that was created for the blind and offers free audio books right through your phone.  Things were looking pretty great and I was feeling positive about my choice to brave the Braille institute and come out from inside my self made shadows.

By the time Joe and I were leaving, having spent hours at Braille, my eyes were burning and aching from the excessively bright lighting all over the institute.  I turned to Joe in the car, exclaiming how ironic it was that after a day at a place made for the blind, my eyes hurt more than they had in months.

I suppose I was a bit over zealous on that first visit and didn’t end up taking any of the classes I signed up for, but I kept myself on the waiting list for mobility training and spent the next six months preparing myself for what was to come.

 

Poetry

I haven’t written a blog piece in ages, but I have been writing a lot of poetry.  My most recently published pieces can now be read in The Furious Gazelle.

I will be back to blog soon!!!!!

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