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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.

Category

dancing

Badass Ballerina

My friend Sarah, who you may know from “On the way to the Barre”, is not only an extraordinary person and beautiful ballerina, but she is also an immensely talented writer.  Her essay, “Spider Woman” appears in the current issue of Ducts Literary Magazine, and she will also be reading at their launch event, this Saturday, in New York.

If you are in or near New York on Saturday, don’t miss Sarah reading her incredible essay!

Taking Zelda for a Spin

I have been hesitant to illicit the help of Zelda outside the Braille Institute, but Tamar pointed out to me the importance of utilizing the cane at least at street crossings, to let people know that I may not see them.  Makes sense, but I still felt anxious about taking her out.

I had plans to visit my Dad, across town, and was taking the bus, so I thought about using Zelda at the street crossing at Sunset and Gardner; I sat at my desk before leaving the apartment and took her out of my bag and unfurled her and practiced a bit in the house, and paced and agonized and put her back in my bag. I couldn’t do it.  I was feeling nervous about being exposed in my neighborhood, about my friends and neighbors treating me differently or forgetting who I was before they knew I was blind.  I think I am a pretty friendly person, but I prefer to stay in the shadows, away from spot lights and prying eyes.

I have thought a lot about whether my feelings around my blindness and the white cane come from a place of shame, and I really don’t think they do.  I sometimes feel as if my RP makes me less than whole, damaged and broken, but I am not ashamed of it.  I have a disease; it has no cure and no apparent origin and I am not responsible for its inception.  It just is. I definitely feel shame about other aspects of my life and myself, things that are in my control, but I think with the blindness, what I truly dread is the attention it will attract once the cane becomes a more present part of my everyday outside life.

I left that day for my Dad’s, just like every other day, cautious walking down the street and crossing Sunset to the bus stop, but kept Zelda tucked away safely in my bag.   During the ride across town,  I thought about taking Z out when I got to Westwood and using her in the street crossing there, but still I kept her hidden.  I got onto the second bus, the one that takes me within a mile of my Dad’s house, still contemplating taking Zelda out.  Half a block from my stop, I took her out and held her tightly in my hand.  I got off the bus and made my way down a short street to the wide and busy street crossing that would take me into my Dad’s neighborhood.  With my heart pounding, I released Zelda from her constraints, her sections popping into place like puzzle pieces, and waited for the light to change.

When the light turned green, I looked to my left to make sure the car in the turn lane saw me and I felt that the usual urgency I get from drivers, impatience to turn, wasn’t there.  It was as if the cane gave the driver pause and therefore gave me a safer crossing.  I stepped out into the busy street, sweeping Z in a 10 to 2 arc, practicing the footsteps Tamar taught me, and made my way across the intersection.  Even writing about it brings the tears welling up in my eyes; I felt like I had crossed a threshold that I have been turning away from for years.  I felt proud of myself and terrified and grateful and also like I wanted to shrink away and hide.  But, I didn’t hide.

I kept Z out and crossed another intersection.  I could have gone left, up a side-walk where there were no other pedestrians, or right where I saw at least five people chatting and smoking outside a local business.  I chose to go right and I held my path.  I remembered the advise from my friend, fellow RPer and Blogger,  and I just kept moving slowly forward, not attempting to move out of the way of the people ahead.  I came toward them and they gave a quick stare, then cleared the way for me.  I felt like bloody Moses; I told Joe later that perhaps that is what I should have named my cane.

The next person I saw was a young woman walking two dogs.  She noticed me coming down the sidewalk and got a bit of a panicked look in her eyes.  Her dogs were busy sniffing the trees, as dogs do, and I think she wanted to stay ahead of the  poor blind lady, so she picked up her smaller dog and moved at a faster pace down the sidewalk.  She turned around 3 times to look at me, but I didn’t feel disdain from her, just curiosity.  She raced off and I continued at my slow pace down the sidewalk.

I got the last street crossing before my Dad’s street; this is actually a street crossing that makes me a bit more nervous than others, because it is wide and there are no stoplights.  I came to it with my usual trepidation, but was curious if having Z with me would make me feel more secure.  I don’t know if security or confidence were present in my heart just then, but I did feel less timid and crossed the street in a much less rushed way.  I sensed the drivers staring at me from inside their cars, but I just kept walking, concentrating on the steps Tamar taught me.  I just kept dancing the dance.

I walked down one more short stretch of sidewalk and then put Zelda back in my bag, feeling pretty good about our first real walk together.

 

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.

Defeated

I have been feeling incredibly defeated since a recent family gathering. Defeated by my inadequacies, by my failing sight and my 40 extra pounds.  I have been abandoning myself, night after night, to the comforts of Cabernet and waiting to feel a sparkle again, or at least a bit of a shimmer. Today is not that day.

I was working out at home this afternoon, like I do most days of the week.  I have a dance DVD that I particularly like and after some kickboxing, I decided to get my groove on a bit with the dance workout.  During the first segment, I did a bit of a spastic leap, landed strangely, twisted my ankle and fell.  I just sat there on the floor, sobbing and dissolving into waves of self loathing.  I felt so broken.  I felt like a failure; an uncoordinated, over weight failure.

I was devastated to discover yet another thing that I would never be very good at or that I would have to take extra care doing because of the damn RP.  I know it sounds like I have a bit of a fatalistic attitude, but I arrived at this injury already feeling so broken and useless that it didn’t take much to send me over an emotional edge. Most of the time, I do maneuver through my disease with a certain amount of strength and a refusal to let it beat me, but sometimes the reminders of how RP makes me vulnerable feel like too much to bear.

For a fleeting moment, while I was dancing, I felt free from myself and from my blindness.  I let my guard down and felt a clarity of body and motion and then I stepped off into the abyss that is my deteriorating vision, slammed back into the reality of my disease and crashed to the ground.  I had forgotten for a moment that I can’t just dance without thinking of the constant threat presented by obstacles that seemingly pop up out of nowhere.  I can’t be free in my body because my motion is chained to my blindness.

I know that this is how I feel just in this moment and how I will probably feel the next time I fall.  But, I will also remember those fleeting seconds when I was dancing and I felt free.  It is that feeling of freedom that will lead me to brush the tears of defeat from my cheeks and to dance again.

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