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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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blind women

#8 Blindfolded

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

#7 Off-Roading with Zelda and Tamar

I have officially graduated from my lessons at the Braille Institute; Tamar came over to my house today and we have begun our lessons out in the (mostly) sighted world.  Although I have been using Zelda when I am out alone, it is a whole new world with Tamar, who can guide me step by step – sometimes literally – and give me critique about how I am doing with Zelda.  There  is always a bit of performance anxiety when I am using Zelda in front of Tamar, but it is a good anxiety that gets me to understand the importance of and pay attention to the details I sometimes forget when I am on my own.

I have to admit that lack of practice is a huge obstacle that stands like a concrete wall between me and progress with Zelda.  Having taken a week off and only been out once on my own when I actually used Z, I needed a good long therapy session before Tamar and I headed outside into the neighborhood.  She is incredibly patient and intuitive about when I need a bit of time before beginning the practical part of the lesson.  I have been pretty forthcoming about my anxiety in using Z in my neighborhood, so today we spent about half the time talking in my apartment.

I talked further about my fraud feelings and she told me that she sees this more in RPer’s than anyone else; she said it seems to take longer for us to get through the emotional barriers because, in many cases, those of us with RP have pretty good central vision.  I felt relieved actually, to hear that I am not the only emotional basket case and that lots of other people with RP are victims to its total mind fuck.  Tamar also reiterated that she believes I need the cane and that I am doing the right thing in getting the training now. If only I had her certainty about it.

Before we went out, Tamar suggested a sort of makeshift way to gage my field of vision, so both she and I could get a clearer picture of what I actually see.  We got out some old- school, bright pink construction paper and Tamar cut out a triangle to tape to the wall.  She asked me to focus on the triangle and then moved pink squares of paper in toward the center, from both sides and the bottom and top, until I could see them.  She taped the squares to the wall at the spots where I said I could see them and this denoted my field of vision.  Obviously, it isn’t exact, but it is a good reference to have.  However, it also makes me question myself, just like a proper visual field test does.

I am not always sure what it means when asked if or when I see something in my peripheral field.  Does seeing mean seeing clearly or thinking that maybe you have some visual awareness of something?  If I am focusing on one spot, do I actually see what is coming in from the sides or am I concentrating on it so hard that I think I might see it?  In the case of today’s experiment, the pink squares, and in a visual field test, the red lights.  I often do little tests on myself; bringing my hands in from the sides or up from the ground, trying to gage when I can see them.  I feel like it isn’t always the same.  Some days I feel like I am seeing the whole word around me and some days, I feel like I am looking at the world through a tunnel.  So, what’s real and how do I know it’s real?  It all makes me feel crazy and it puts me in a position where I am still constantly questioning whether or not I actually need to be doing the cane training.  I don’t know when this ends, or if it ever will; and I don’t know how to move beyond it so I can just use the goddamn cane regardless of how much vision I do or don’t have.

There is another bizarre phenomenon that occurs when you have RP.  You can be walking down a hall or corridor and all of a sudden, you see something flying at you from the periphery, but there is nothing there.  It feels so real, that I have almost fallen backwards to get away from the phantom flying thing.  So, is what I think I might see in the visual field experiments a phantom or do I see it?  I don’t think it helps that I question absolutely everything I do, think, say or feel in most circumstances that have nothing to do with vision or lack thereof, so when it comes to my vision loss, I feel as if I am in a constant state of unknowing.

I took a break from blogging and went to have dinner with my friend Patricia who, as always, listened patiently to  my ranting and came up with a brilliant suggestion.  She had the idea that I think of some ritual to mark this period of mourning in my RP journey; a tattoo, a ceremony , a burning of something; just something that acts as a tangible marker of this experience.  She suggested that perhaps if I ritualized these losses in some way, it may give some sense of finality and help me move into the next phase of my life and of my disease.  I  love the idea.

After the therapy session with Tamar this morning, we did make it out of the apartment.  It was to be my longest walk around my neighborhood and the most in-depth.

First, I used Z to go down the stairs from my apartment; something I hadn’t done yet.  It all came back pretty easily and I got to the bottom unscathed.  Then, we decided to walk down my street and around the block.  I start walking, Tamar behind me to gage my stride and swing: it turns out that my formerly wider than necessary swing has now become too narrow.

We stopped just outside my building where Tamar asked me to look around and identify tangible landmarks that can tell me where I am when I have no use of vision.  For example, just north of my driveway, there is a hedge that is taller than I am, and at the south end of my driveway is a tall and dented metal pole.

We walked down to the end of my block and spent a long time at the street crossing; the intersection at the south end of my block is a pretty basic four-way with traffic lights and no left turn arrows, but Tamar wanted me to tell locate my buddy cars, danger car and go over the flagging steps to make sure I was confident before crossing the street. I had told her earlier that I wasn’t warming to the flagging the cane thing, but she let me know that it is the most important part; it let’s people know that you are there and is the biggest safety precaution for blind people crossing the street.  So, I flagged the hell out of Zelda.

We continued east and came to the next street crossing; a 3 way intersection with one stop sign.  The only obstacle at this crossing was a large hedge that blocks the pedestrians from the right turning cars, so I had to step a bit into the street to make sure it was clear before I walked.  Not to bad.

After the second crossing, we headed North and I could see a huge obstacle course on the sidewalk up ahead.  Tamar was excited. We got to the rough terrain, and she asked me to close my eyes.  I started tentatively.  This wasn’t just a patch with a bit of raised sidewalk; there was also an orange traffic cone, a grassy hole in the middle of the course and loose slabs of concrete that had been placed there presumably to make the ground more even; it didn’t work.  To the right of the monster obstacle was a patch of dried lawn, so I headed in that direction.  Tamar asked me to go the hard way.  Without any use of my eyes, I took one small slow step at a time, feeling first with Zelda, then with my left foot while keeping my right planted to steady me.  When I hit the cone with Z, I anchored her in front of me for safety and felt with my hands to find the cone and whatever other obstacles may be around.  I hesitated and teetered a bit, but I made it safely across.  I felt as if I had scaled a mountain.  I opened my eyes and gave Tamar a smile; ” Let’s do it again,” she said.

I made it across the obstacle in the other direction, but it felt like entirely new terrain.  I found the cone, which was a great marker, but it wasn’t where I expected it to be.  It may be common sense to some, but I didn’t have the time to flip the course in my head and without the use of my vision, it was entirely different.  I do have some usable vision still, so I am lucky that I don’t have to rely on everything Tamar is teaching me now, but I will have the skills and the information if and when the time comes that I need them.

The three of us continued up the block and we came to another 3 way street crossing without much event except an enormous truck that pulled out of a driveway toward the intersection.  I decided that I didn’t feel safe crossing, so we waited for the next light and walked back toward my street.  During the last half block, I looked for landmarks and tried to keep my swing wide enough for Z to give me any necessary information about the ground in front of me.  We stopped in my driveway to say goodbye and Tamar said, “next time I want you to do it blindfolded.”  Holy crap.  I was hoping we’d go grocery shopping.

 

A 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.

#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.

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.

 

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.

 

Empty Case

Every Thursday night, I take my pugs, Blossom and Jade, to a playgroup at a local pet shop.  The group is referred to as  Yappy Hour and my girls love it.  I don’t do the dog park thing, so this is the one opportunity a week they get to be off leash with a group of other dogs.

The play commences at 730 in the evening and lasts about an hour.  In the fall and winter months, it is already dark by 730, so I can just wear the glasses I use for all activities that don’t involve the sun.  My night vision is almost non-existent, but the dogs keep me in line and I always walk the brightest path along Sunset Blvd.  I have walked that stretch of road so many times, even the grooves in the sidewalk are etched in my memory.  I am not generally comfortable being out by myself at night, but I cling to the false sense of security that my pugs give me and brave the dark for their sake.

In the Spring and Summer, I am faced with a season specific dilemma.  The sun can stay out as late as 8pm on warmer nights and I struggle with the decision between wearing my sunglasses and having to bring a bigger bag with me or baring my eyes to their most bitter enemy.  I have to admit that I can be a bit lazy and so sometimes choose exposure to the sun over packing and carrying a bigger bag, but most of the time, I wear my sunglasses and bring the regular ones for the hour in the pet shop and the walk home.

On an evening in the middle of the summer this year, I got myself and the girls ready for Yappy Hour, packed their bag with treats and poop bags and put my regular glasses into another bag with my wallet.  When I got to the pet shop, I tucked myself into a corner to change my glasses and found myself in an unexpected bind. The case was empty.  I had left my glasses on my desk and brought an empty case. Without glasses, the world is a complete blur for me, so I started to panic, just a bit.  I was wearing my sunglasses, but they were no use to me; they are too dark to wear inside and it was getting dark outside.  How the hell was I going to get home?

I took it in stages.  First, I had to get through Yappy Hour without being able to see who was who or which dog was which.  Fortunately, I am well-known to most of the staff at the pet shop and the woman who oversees the playgroup is our dog trainer and knows about my RP. I let her know what was going on and asked her to keep a bit of an extra watch on my girls because I couldn’t see them clearly running around the play area.  But, I still had to figure out how I was going to get home.

I don’t know the other humans in Yappy Hour well enough to ask them for a ride home and I think most of them walk there anyway, but thankfully my husband works about 5 miles from home.  I hated asking him to leave work early, but this was an emergency.  I called him and of course he agreed to come and get me, but he couldn’t leave until almost 9 and the pet shop closes at 9.

At 830, Yappy Hour came to an end, I put the leashes on Blossom and Jade and I just sat there pretending to look for something in my bag while everyone else trickled out.  Then, I got up and began to wander the store, taking care not to topple over displays or crash into any pillars.  I chatted with our trainer for a bit, but she and the other staff were busy getting the shop ready for closing time.

The time passed like molasses.  845 and my husband hadn’t arrived.  Ten to nine, still not there.  Five to nine, the staff were locking the back door and there he appeared; my hero come to escort his blind wife home.  I was so grateful to see him, but also felt foolish and ashamed that I hadn’t been more prepared.

Since that night, I haven’t left the house without making sure my glasses are in the case.

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