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Stories From the Edge of Blindness

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

Month

July 2017

A Clear Handle

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

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.

 

My First Helpful Person

I was at UCLA the other day, routine stuff, nothing to do with RP, and I was cruising around with Zelda.  I find it most advantageous to keep my hat and sunglasses on when Z and I are on the move. It makes me feel more clandestine and it makes me look more blind.   I seem to be thinking about myself what I believe sighted people  are thinking about me; I can see, so why the hell do I have the cane?  I know why, I have written about why, I get it both logically and emotionally, but still I feel like I am not blind enough or not a good enough blind person.  Perhaps that is just my usual way of thinking about myself in regard to life in general; I am never good enough.

Anyway, I was walking around being a not good enough blind person, and when I went into the medical building, it was full of tarps and tape and wood and all sorts of construction devices. I needed to get down to the basement level to the radiology department, but it looked like the elevators were blocked off.  I walked around aimlessly for a while, not sure where to go and then headed for the stairwell.  I figured I could get to the basement and practice using  Z on the stairs.

As I neared the stairs, I heard a man approach and ask, ” Ma’m, do you need help?  You are heading for the stairs.  Are you sure you want the stairs?”

I, of course, knew I was headed for the stairs, but realizing that it wasn’t the smartest path to take and not wanting to refuse someones kindness, I told the man I was looking for the basement.  He immediately took charge of the situation, saying, “I’ve got you”.

He began directing me to the elevator.  He was actually a pretty good guide; telling me 2 feet before I needed to turn and making sure I had room to walk through groups of people. I have to say, it felt really bizarre and I felt like a fraud of sorts.  I could tell that he thought I was totally blind and I didn’t know how to tell him that all I needed was to be shown the way to the elevator. I felt swept up in the whole scenario and he was my first helpful stranger, so I just went along with him.

He took me all the way to the basement, guided me to a chair and even helped me check in.  That is when it got a little weird.

He assumed that I couldn’t see anything; and why wouldn’t he? I didn’t tell him any different.  When he went to help check me in, the receptionist told him that I had to fill in forms on an iPad and he gave her a look saying he didn’t think I was going to be able to do that.  He really was looking out for me (literally), but I had to tell him at that point that it was ok and I could fill out the questionnaire on my own.  I explained that it is my peripheral vision that is affected but that I can still read.

“Oh,” he said, “so it’s not completely gone.” He looked a little embarrassed. I felt terrible, as he had been so nice to me.  I thanked him profusely for his kindness and he left the waiting room rather quickly.  I wish I could have talked to him more, about RP and about how terrific he had been with me.

His name was Joe, by the way.  How great that my first helpful stranger was named Joe.

 

Step off the Curb

The incident that precipitated my contacting the Braille Institute took place in a grocery store.  In case you didn’t read about it in an earlier post, it basically involved me and an enormous pillar; one second I was heading for the bulk items section and the next I was flat on the ground, having had a head on collision with the pillar.  Joe and I agreed it was time for me to get a white cane.

Jump ahead many months and I have my cane and I am learning from a great instructor and the grocery store is still my nemesis.  I know that if I can get the courage to use Z in the grocery store, it will make shopping so much less stressful, but I just couldn’t pluck up the courage, until a few days ago.

I left for Ralphs (our local grocery store) with Z folded and in my hand, giving myself a pep talk to help with getting some courage. I got outside and I thought about unfolding her, but I didn’t.  I walked the half block up to Sunset and the 2 blocks east on Sunset toward Ralphs with Z still folded in my hand.  Then I came to the light and stopped.  The light turned green and I didn’t cross.  I waiting through 2 lights, trying to talk myself into unfolding Zelda and finally, I did it.  I walked to the curb, waited for the light to change and crossed the street to Ralphs.

I know that I have been writing a lot about my reticence to use Z in my neighborhood; trying to explain it to you and to help myself understand as well.  I keep coming back to the same conclusion; I am terrified of the attention Zelda will bring to me.  I have loved being able to live with anonymity, to go through the city as if I were invisible, and I know that won’t be possible anymore.  But, the alternative, if I don’t use Zelda, is potentially dangerous.  I have to get the fuck over myself.

So, I cross the street, walk through the Ralphs parking lot and in through the sliding doors. The entrance is often the most congested part of the market and the part that causes me the most anxiety.  I usually move through the crowd trying to make myself as small as possible, afraid every second of what or with whom I may collide.  This time, people stopped and moved to the side and let me through.  They stared, but not with cruelty, and they got silent, but there was no disdain in the quiet.  They may have felt some pity or curiosity, but all I cared about was that I had walked into the grocery store without feeling paralyzed by my own anxiety. I felt the spotlight on me, but it was something I could get used to.

Then, the spotlight became a strobe light.  I passed the row of checkout counters and one of the Ralphs employees called out,”Do you need any help shopping miss?” I didn’t pause or turn around, just said no thank you and kept walking.  It actually made me smile. He was being nice and I felt like I had stepped into a new part of the reality of this whole white cane thing, into the thick of it really, and I was proud of myself.

I finished my shopping, unscathed, and continued on to the pet store and then home.  I didn’t fold Zelda up until I got to the top of my stairs.

 

#5 Playing With Toy Cars

My 5th lesson with Tamar wasn’t a long one and it didn’t involve using Zelda, but I did get to play with toy cars.

I got there a little bit late.  It was an early lesson and I knew I would need coffee in order to function, so I suggested to Joe that we visit the drive through at McDonalds, across the street from the Braille Institute.  I don’t normally do McDonalds, but I was desperate for some caffeine.  I ordered a latte’ and it was apparently a special order because we were asked to drive to a reserved area and wait for someone to bring the latte’ to us.  I was already running late and the latte’ put me back a further ten minutes, but it was pretty good and Tamar didn’t seem to bothered; I had texted her to let her know that the need for coffee had won out over timeliness.

I unfolded Z outside the BI and went inside to wait for Tamar in the lobby; I think people are starting to recognize me because they are even friendlier than when I fist went to Braille, and I am no longer required to wear a visitor sticker.  I am one of the regulars now.

Tamar met me in the lobby with a large piece of painted cardboard and some zippered pouches; she said that it was time to learn how to safely approach and maneuver street crossings.  Then we went into the cafeteria.  No, there are not any street crossings in the cafeteria, but Tamar had come equipped with a miniature model of a  street and plenty of toy cars.

I could give you the play by play of what she taught me, but let me just give you the key terms: Near Side Parallel, Far Side Parallel, Near Side Perpendicular, Far Side Perpendicular and Buddy Car.  I am now armed with these terms at every cross walk I encounter.

I stop at the light and even if I still have time to cross, I wait until the next light because this gives me the chance to get a handle on what the cars in all 4 positions are doing, and locate my buddy car, which is the car in the Near Side Parallel position. Tamar suggested that while I am learning, I pay attention to the cars rather than relying on the walk signals.

The light turns green, I listen for the surge of engines of the cars driving parallel to the cross walk and the car to my left that could potentially be turning right.  Once I see the car in the lane parallel to the crosswalk start to move and make sure there are no right turners to my left, I know it is safe to cross.  If this sounds confusing, it totally is.  It is learning to cross the street all over again; just more safely and efficiently.

I find myself thinking about car positions now, not only when I am at a cross walk, but when I am walking down the sidewalk or in the car with Joe. There is so much to remember and so many steps in ensuring that I am doing things in the safest possible way for myself and others.  I look forward to the time when it is all just second nature.

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………

Crimson

My poem, Crimson, was accepted for publication in Sheila – Na – Gig Online and is now live.

 

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.

 

ERG – Take 2

The day of my RP diagnosis was filled with different tests, including an ERG (Electro Retina Gram), which tests the retinas response to light.  It was by far the most grueling of the tests that day ( I wrote about it in another blog post when my blog was brand new), but I was lucky because I didn’t have to have another one…..until yesterday.

I have to say that this time, the ERG was much less traumatizing, both because I knew what to expect and because the woman administering the test was compassionate and friendly (the opposite of my first experience).  Don’t get me wrong, I was still freaked and the test still seriously sucks, but a friendly and competent tech makes a huge difference.

For those of you not familiar with the procedure of the ERG/Dark Adaptation test, let me give you a run down. After your eyes have been numbed and dilated,  you have to sit in a completely dark room for 30 minutes; and I mean completely dark, like the woods in the middle of a cloudy night with no moon dark.  The idea is that 30 minutes will be enough time for your eyes to adjust as much as they can, which with RP is pretty much not at all, as most of us have night blindness.  I sat there in the room trying to meditate and, every few minutes, I put my hand in front of my face to see if it was becoming any clearer.  It never did.  The first time I went through the 30 minutes in the dark room, I was terrified and crying; this time, I was more contemplative.  I kept my awareness on the darkness itself; it was as if I could see inside of it.  It felt like a web around me and was at once suffocating and endless.  I was more curious about it than afraid of it.

After the 30 minutes went by, the tech came back into the room, through a special door, between the outer room and the dark room, that prevented any light from entering.  It is very important that the first part of the ERG be in darkness; hence the dark adaptation portion. And, then the real fun began.  First, she gave me some more numbing drops and while they were doing their thing, she attached an electrode to my forehead and started prepping the discs.  Plastic discs (they call them lenses) get inserted between your upper and lower eyelids to prevent you from blinking and ensure your eyes stay as open as possible during the test.  The first pair of lenses she tried to insert (the one’s for grown ups) were too big.  She left the room and came back with pediatric lenses; also too big.  What the hell, I thought.  I know I have tiny eyes, but they are bigger than a babies eyes.  She came back with the smallest lenses and those, finally, went easily into place.  She told me that I required the smallest lenses because I have high cheekbones, like Cindy Crawford.  I think she was just being nice, but I was grateful that she didn’t try to force the grown up lenses between my lids.  It became clear to me that the first ERG tech had forced the larger lenses and that must have added to the horror of the whole thing.

To insert the lenses, she asks me to look down while she pulls my lashes and upper lid open, placing the disc first into the top part of my eye and then into the lower.  She then attaches electrodes to each of my cheeks and tapes the wires into place.  The room is still dark and I still can’t see a thing, so I turn my chair to where I think the testing device is (turns out I got it right) and she guides me toward the chin rest.

The testing device is a big dome with the chin rest at the opening.  At the back of the dome is a red light; she asks me to try and stay focused on the red light; it is the first light I have seen in an hour.  Then the test begins.  For the first part, the dome remains dark.  Lights shoot toward my eyes about five or six times, then stop and then start again with varying intensities.  There are about 6 rounds of flashes in the dark and then she turns on the light in the dome.

It is an insanely bright light.  And remember, my pupils are dilated, my eyes are being kept open so I can’t blink and I have increased light sensitivity even when my pupils haven’t been dilated (another perk of the RP).  This is pretty much my worst nightmare. The tech tells me I have to wait five minutes to adjust to the light. My eyes are in agony.

The first sets of flashes are, like the ones in the dark, about five or six seconds a piece, but this time, I have to wait 2 minutes between each set.  My eyes are burning and stinging and the lights in each set increase in brightness and speed and each 2 minute waiting period feels like two hours.  Thankfully, the tech talked to me and kept me aware of the time; she was really sensitive to how I was feeling.  She knew what was coming.

They save the best for last.  The final two sets of lights are successive and last about ten seconds each.  The lights are like frantic strobe lights that shoot at your with a force of brightness that takes your breath away.  The very last sequence was so intense and painful that my lower lip and chin started to spasm.  Ten seconds of pure hell.

The technician was pretty quick, thankfully, to get my face out of the dome and the lenses out of my eyes.  Then, she rinsed each eye a few times with a really cold saline solution and told me my pupils would be dilated for at least another 2 hours (I knew it would be more like 4) and that my eyes may feel a bit dry and scratchy for a few hours after the numbing drops wore off.  She led me to the door (she was a good guide, by the way) and I stepped out of the nightmare and into a bright blurred hallway.

I couldn’t see a thing.  Luckily, I had Zelda.

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