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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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partially sighted

Hands off the Wheel

A good friend of mine made a great recommendation regarding my blog; she pointed out that people new to my blog may not know that when I refer to Zelda(or Z), I am taking about my white cane. So, in future blog posts, if Zelda is part of the story,  I will make sure to add a note explaining who (what) she is.  Thank you to my friend – you know who you are and I love you!

So, yeah, Zelda is going to be part of this particular post.  You may be thinking, ” oh god, not that bitch Zelda again”, but, unfortunately, Z isn’t going anywhere, no matter how hard I try to get rid of her.

I have been treating Zelda deplorably.  I have ignored her, shunned her and concealed her on a crowded hook.  If I don’t see her, I don’t have to think about her; and if I don’t have to think about her, I can pretend that I can see just like most other people. I am really good at the avoiding and pretending thing.

When I was learning to drive – the second time; a few years after two accidents and a ticket for failing to yield to a pedestrian in a crosswalk (no one was injured) – my Dad took me to an abandoned parking lot to test a theory.  He asked me to just drive around as if I were searching for a parking space and then he randomly shouted out things like: OH MY GOD, A BABY IN THE ROAD or LOOK OUT FOR THOSE NUNS; every single time, my response was to take my hands off the wheel and look away, as if I wasn’t really driving the car.  My instinct definitely veered in the flight direction and I obviously, in some seriously twisted part of my brain, figured if I ignored it, it wasn’t happening.

Of course, it turned out that my accidents were, in large part, due to RP and my limited peripheral vision, but at the time I had no idea that I had RP and that I wasn’t seeing things that fully sighted people would see.  That being said, I still took my hands off the wheel.

I wish I could say that I am one of those people who sees a challenge and jumps in with fearless determination; I am not.  I am, however, incredibly proficient at avoiding the things I can do to make challenging situations a little easier.  I eventually come around to face reality, but then I close my eyes and turn away like an insolent child; I don’t want this fucking problem, disease, etc., and I am not going to deal with it.  I have been doing it with RP for years, so I was bound to treat Zelda with the same dismissive attitude.

As I have said before, and will say a million times, RP is a total mind fuck.  It is purgatory.  It is the gray area covered in fog.  It is a disease that begs to be denied, especially by those who are well versed in denial.  But, RP is pesky and persistent and pops up often to remind me that I am defective.  No matter how much I want to, RP won’t let me take my hands off the wheel.

It doesn’t matter how many coats and hats I pile up on the hook over Zelda, she is in my head.  I have to find a way to see her as an ally, but I am struggling.  I feel the weight of her even when I don’t have her with me.  I went into my mobility training with a positive attitude, but discovered that this is, without question, the most difficult challenge I have faced in my RP journey.

I am having trouble fending off my insolence.  I keep screaming in my head that I don’t want RP and I don’t want the fucking cane, kicking at the reality of my disease and trying to reject it; but, I don’t have a choice, RP isn’t going anywhere.  If I don’t find a way to see Zelda as beneficial, one day, I am going to get seriously hurt.  The thing is, I can’t imagine it hurting more than it already does.

 

 

 

Under the Lacquer – Part 3

This third, and last, story about the women at the nail salon isn’t one I really know; it is woven from a few threads of detail given to me by her friends, but mostly from my imagination.

She is the lady that sings.

I don’t know her name and I can’t remember when she arrived, but I will never forget her voice.  Pop music usually invades the shop – apparently for the benefit of the customers – but every once in a while, Carol will put on Classical or Opera or just allow the shop to sit in silence for a bit.  It was a silent day the first time I heard her sing.  She walked out from the back of the shop, looking toward the windows and singing a Vietnamese song; her voice was gentle and clear.  She gave the words longing and anguish, and I felt as if I knew what the song was meant to say even though I didn’t understand the words.  She only sang for a minute and I am not sure she even knew she was singing; it was as if the song emanated from her and she sang, not for us, but for herself and in honor of the music.

I must have had a look of awe, because Jean approached me and said quietly,” Beautiful, yes?  She was a singer in Vietnam; for her life she sang.”

The woman who sings is the oldest in the shop, maybe 70.  She is short and a bit plump and has thinning grey hair that she allows to remain unkempt, as if she doesn’t have the time to care what others might think of her.  She is always smiling and seems to love the customers who joke and laugh the loudest, even though she moves quietly. I get the feeling that she has seen the darkest parts of life and has chosen to live inside her music and allow her voice to rise her up above trauma and pain.  Her upper back is covered in circular scars that look like they could have come from torture; they are definitely not shrapnel wounds as the circles are perfectly symmetrical, not haphazard like wounds that would have been caused by a blast.

I notice now that every time I am in the shop and she is there, the pop music is turned off.  It is as if she is being shown respect; all the women want to hear her sing.  I have heard her sing Opera in English and Italian, songs from musicals, and of course beautiful lilting songs from Vietnam.  Once, when Kim was away, the singing lady did my pedicure and I asked her about the song she was singing and if she sang professionally in Vietnam; she just smiled and kept singing.

Part Time Cane

When I first started O&M, I resigned myself to having Zelda with me at all times and using her everywhere I went.  I grew to feel that if I didn’t do this, I was a bad student and an irresponsible blind person.  I felt that if I was taking the time and energy to bring Z into my life and learn how to use her properly, I should use her all of the time.  I started to resent the cane, to see her as a cross I had to bear rather than an aid to my safety.

Pretty much my whole life, my reaction to being told that I have to do something is to say fuck you, and go about not doing it as vigorously as possible.  But, I am no longer 12 and I do have grown up moments, so I found myself in a constant quandary around Zelda.  I wasn’t going to be able to employ my usual all or none way of doing things and, pathetically perhaps, it took me this long to figure out that I don’t have to.

I can use Zelda when I want to and when I feel I need to; I make the rules and I get to decide (and yes, I do realize that sounds a bit 12 years old, but I am who I am).  So far, I feel that it is most beneficial for me (and unsuspecting strangers) to have Z with me and use her when I am on my own.  I feel more confident walking down the street with her, shopping, on the bus etc.  However, when I am out with others, I haven’t really found a need for her.  My husband and my friends are really great about helping me when I need it and I feel like the cane just gets in the way; I usually bring her and she just hangs on the chair waiting for her turn around the block, which never comes.

So, I have decided that, for now, Z will be a part-time cane.  I get to feel good about having her, but not chained to her when I feel that I don’t need her.  I know that there will still be circumstances when I bring Z with me and she may or may not come out of her case.  There are times when it is better to give myself the option; for example, when I am out with the dogs or visiting a neighbor and don’t know if I will be back before it gets dark.  I definitely need Z in the dark and there have been a couple of incidents (pre Zelda) when I have had to call my husband to come and pick me up from just down the street or around the corner because it has gotten dark and I only have my sunglasses with me.  Sometimes I don’t plan to be out after dark, but it happens anyway.

I think that trying to become what I believed a blind person should be, actually put me in a position where I was stripping away parts of myself and adding to my confusion about my own vision.  There is not a right way to be blind; we all have different struggles and feelings and however I feel about or choose to deal with my blindness isn’t static, nothing is.

I am not sure how much vision I will have in a month or a year or 10 and I am sure that my feelings about the cane will change as my vision changes and I begin to recognize new situations in which having her would be beneficial; for now, I realize that Zelda is not a cross to bear, but an aid to utilize as I deem necessary.

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.

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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