#9 Winding Down

Posted in Blindness, Degenerative Retinal Diseases, Disability, Life in Los Angeles, Loss, Retinitis Pigmentosa, Vision Loss, White Canes for the Blind with tags , , , , , , , , , , on August 21, 2017 by floweringink

Tamar and I are nearing the end of our time together and soon, she will leave Zelda and I on our own.  I tried to think of ways to keep doing the lessons, but it is clear that she has given me all the tools I need and now it is up to me to implement them.  Today was our second to last lesson.

I met Tamar downstairs, passing my neighbor, who I suspect has Munchausen Syndrome ,and will have a white cane of her own before the year has ended.  She is a lovely person, but always sick and always ends up having a new illness after she has heard that someone else has it.  She is highly suggestible when it comes to illness.  For example, she was in Ralphs and heard a pharmacy announcement regarding pneumonia; a few days later, she had pneumonia (or said she did).  She knows that I have RP and about 6 months ago told me she thinks she has it as well, or something like it.  I have been avoiding introducing her to Zelda because it is an invitation for her to talk about her illnesses and convince herself that she needs a white cane.  I had managed to avoid her until yesterday.

I saw her on Sunset Blvd.; I was walking home with Z and she was heading to the corner store for a candy bar.  We stopped and chatted and she asked how I was doing with the cane and the lessons.  As I said, she really is a lovely and caring person, but it can be exhausting taking about her sickness all the time; it is how she defines herself and you can never be sure if she actually has what she claims to have.  Munchausen’s is a truly fascinating disease.  As expected, she turned the conversation around to her own ( real or not real?) disability and said she would be following closely behind me with her white cane.  I give it 6 months.

Anyway, I digress.  Tamar is waiting.

Tamar is at the bottom of the stairs wearing a beautiful sunhat; black with a cherry blossom design across the brim.  She is, as ever, cheerful and warm.  We have a plan to go to the grocery store today and she also wants to practice street crossings, so we get on our way and start walking North toward Sunset.

I am getting the feeling that street crossings are what I should be most diligent about and also be practicing on a daily basis, whether or not I have actual errands to do.  About 3/4 of the way up the block, Tamar asks me to close my eyes and listen for the traffic and what it sounds like as we get closer.  It isn’t only the engines that grow louder as we approach the corner, but the sound of gravel under tires and dips in the road that rattle the underbellies of the cars.  I also feel the air speed up as the force of the cars manipulates the wind.  And then Zelda drops off the curb.

We come to the first street crossing, review scanning techniques and the timing of flagging the cane with scanning.  Tap and look left for the danger car (right hand turner).  Tap and look to the middle for left hand turners.  Tap and look right for any cars in the far lane that may sneak up to turn right  before you get to the other side of the street.  I thought I had this stuff down, I mean it is just logical, but I feel like I haven’t been doing it at all when I am alone.  Why is it so bloody hard to implement things that actually make so much sense?  I feel like an idiot, but I press on and try to get the flow.

We come to the second street and this one actually has a light; I stand on the corner for a while with my eyes closed, getting used to the sound of traffic and identifying my own location based on the sounds.  And then we cross and continue 2 more blocks until we are at the crossing to the grocery store.  Tamar teaches me a new thing here:  Even though I have to cross the street to the left, I proceed forward with my eyes closed until Zelda finds the curb in front of me to the East.  To find the right location for crossing in a northern direction, I follow the curb to the left and swing Z back and forth, always keeping the curb in her range.  I am tempted to just keep Z to the right and follow the curb continuously, but if I don’t swing her to the left, I won’t know when I have come to any obstacles on the left, including the pole that houses the cross walk button.  In the middle of the turn from East to North, the curb becomes flat  and this throws me at first; is Zelda in the street? But, Tamar reminds me of the wheel chair access at most intersections and instructs me to move further onto the sidewalk at this point, while continuing to swing Zelda and maintain an idea of the location of the curb.  When the ground slopes back up and I find the curb again, I am relieved and feel safe.  I swing my cane to the left and make contact with the light pole and Tamar tells me to do it again in the opposite direction.  I do this about 6 more times and then we get to cross the street toward the market.

I have actually been to the market several times with Zelda, so I feel pretty confident that I have it down.  The parking lot is tricky because there is no obvious pedestrian walkway into the store (you have to walk through the parking lot), but there are bumpy yellow grates to indicate when you have come to a place that requires looking out for traffic or that you have cleared the traffic and are safe.  It is just about being diligent, looking in all directions and making the cane visible before crossing over the lane.  I have been super careful about this since I was hit by a reversing car in this exact parking lot.

We make it safely across and go into the store; Tamar stops me in the entrance and tells me that I need to hold Zelda closer to the base of her grip and keep her closer to me when I am in places like the grocery store.  Oops.  I totally haven’t been doing this.  I have been the selfish blind person who has left it all up to the sighted people.  I have been in Ralphs (that is our store), cane fully extended and swinging to my heart’s content.  Tamar shows me that by doing that, I have been blocking isles and really not watching out for other people at all.  I can’t always leave it all up to Zelda, especially at the grocery store where people are always off in their own foodie worlds.  I will be more courteous in the future.

We take a short spin through Ralphs and then head to the pet store and home.  As usual, I was exhausted and happy at the end of our lesson, but also a little sad because I knew that the next would be the last.

Monsters

Posted in Blindness, Degenerative Retinal Diseases, Disability, Life in Los Angeles, Memoir, Public Transportation, Retinitis Pigmentosa, Vision Loss, White Canes for the Blind with tags , , , , , , , , , on August 17, 2017 by floweringink

So far, Zelda and I have encountered mostly courteous and friendly people, some helpful and some indifferent.  I have been using her more frequently and giving myself over to the reality of her place in my life and the confidence she can give me, if I allow it.  My last two bus trips, I had her out and open on the bus; the first time, the bus was almost empty and I took my allotted seat in the “reserved for disabled” section.   Today, the bus was much more crowded.

I got on to find that all of the front seats, those reserved for elderly and disabled passengers, were occupied by screaming, self-indulgent middle school kids.  I walked toward the reserved section, and not one of them moved to get up and offer me a seat.  I had to practically force one of the boys,  taking up an entire double seat just beyond the single reserved seats, to move over and let me sit down.  I was not happy.

It isn’t that I think I deserve a special seat because of my visual impairment; I was pissed off because not one of these 7 kids showed a speck of courtesy or decency.  I don’t have a lot of expectations of 13 year olds, they are often narcissistic little shits, but I do think that parents should teach their kids to be at least a little bit polite and compassionate.  These kids were neither, and as the ride continued, they showed just how monstrous they actually were.

Even more annoying and rude than not offering the blind lady a seat that is technically reserved for her, was the volume at which they chose to speak.  I wouldn’t actually call it speaking, it was more like shrieking and shouting. They were so loud that I couldn’t hear the stop announcements, and I swear they were in fucking competition to see who could be the loudest and most obnoxious.

They kept getting up out of their seats to show each other things on their phones and one kid was standing in the aisle, doing some bizarre contortion dance and crank calling Dominoes pizza.  On one call, he ordered 42 pizzas, on another he ordered a boneless pizza and some power tools and on another he ordered a whole chicken , a box of pens and a lawnmower.  I wasn’t eaves dropping, the whole bus heard this idiot kid, who got louder and louder as his friends screamed at every new crank call he made.

I was in hell and I had no escape.  Twice, I put my hand up in a gesture of disapproval when they got so loud it was hurting my ears, but I never said anything.  I wanted to.  I wanted to tell them to take it down and that they were rude and discourteous to every person on the bus, but I just sat there and waited for them to get off.  I don’t know why.  Perhaps I felt like it wasn’t worth my time or energy; they aren’t my kids and they wouldn’t listen anyway.  Or perhaps my fear of having even more attention drawn to me keeps me silent when I shouldn’t be.  The truth is, I know I should have told them to shut the fuck up.  They believed me to be totally blind – I know this because I heard them talking about it – and still they shrieked and cavorted and didn’t give a thought to the fact that I, and perhaps lots of others on the bus, may need to hear the stops in order to know where the hell we were.

When they finally started getting off, at various stops way too close to where I live, they left with the same level of disregard for other people as they had shown the entire ride.  The kid next to me grunted at me and said,” hey, I need to get off now.” No excuse me, not even an attempt at a polite tone.  Another kid stood at the entrance for about 8 stops, apparently waiting for hers, and didn’t move out of the way for people getting on the bus.  I heard one guy say to her, “excuse me,” politely, and then, “or not”, with biting sarcasm.  I bet he would have said something to all of them had he been privy to their lovely demeanor for the entire ride.

The only consolation at this point was that, as each kid got off the bus, the remaining ones got slowly quieter.  Contortion dance crank call boy was the last one to leave, and he stood there like a guilty wet rag, not saying a word.

#8 Blindfolded

Posted in Blindness, Degenerative Retinal Diseases, Disability, Fear, Life in Los Angeles, Loss, Memoir, Retinitis Pigmentosa, Super Powers, Vision Loss, White Canes for the Blind with tags , , , , , , , , , , , , on August 14, 2017 by floweringink

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

Posted in Blindness, Degenerative Retinal Diseases, Disability, Fear, Life in Los Angeles, Loss, Retinitis Pigmentosa, Vision Loss, White Canes for the Blind with tags , , , , , , , , , , , , on August 9, 2017 by floweringink

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

Posted in Blindness, creativity, Degenerative Retinal Diseases, Disability, Life in Los Angeles, Public Transportation, Retinitis Pigmentosa, Unemployed, Vision Loss, White Canes for the Blind, Writing with tags , , , , , , , , , , , on August 4, 2017 by floweringink

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.

A Clear Handle

Posted in Blindness, Degenerative Retinal Diseases, Disability, Life in Los Angeles, Loss, Public Transportation, Retinitis Pigmentosa, Serious Illness, Vision Loss, White Canes for the Blind with tags , , , , , , , , on July 25, 2017 by floweringink

Today I feel like I am failing; with O&M training and Zelda.  I keep waiting to feel natural with Z, but instead I feel awkward and so far away from the reality of what she means to me and to my life.  I can’t get a clear handle on why this is so hard for me; what about me lacks the ability to just get on with it?  It is as if any courage I had has been slowly peeled away, the layers brittle and dusty, collecting in my blind spots.  My health is deteriorating as I gain weight at an unprecedented rate; it is as if I am creating a barrier, but I can’t see what that barrier will protect.  I have distanced myself from the good habits I had been honing before the O&M started; I stopped meditating and exercising.  I am at once consumed by the changes in my life and doing everything I can not to face them.  I think that would make anyone feel a little bit nuts.

Today,  I got off the bus at a pretty sketchy corner, many blocks from my usual stop, but I was determined to use Z for my entire walk home.  I felt like I was going through the motions and not really using her to my advantage.  I find myself falling back on all of my old coping habits, not trusting that I can use Z to my benefit.  I know that I don’t practice enough.  I know that six weeks into my lessons, I should probably be using her every time I am out.

As I was writing that last sentence, Tamar texted me; perfect timing.  I was texting with her and started to cry and realized that I have been thinking about all of this blind, Zelda, white cane stuff and I have been writing about it, but I haven’t really allowed myself to feel it.  I have been a bit down and I have been isolating myself, but I haven’t cried or truly mourned.  I have thought about what it would mean to mourn, but I haven’t done it.  So, Tamar is giving me a week off so I can do the feeling part of this is a way that will help me get on with the walking out in the world with Zelda part.  I can’t believe that I hadn’t cried about this; I cry about everything.

I am crying now, and that is a good thing.

#6 Flag Your Cane

Posted in Blindness, Braille, Degenerative Retinal Diseases, Disability, Fear, Life in Los Angeles, Loss, Retinitis Pigmentosa, Serious Illness, Vision Loss, White Canes for the Blind with tags , , , , , , , , , on July 24, 2017 by floweringink

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.