Stories From the Edge of Blindness

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


Life in Los Angeles

I Just Wanted to buy Milk

We needed milk, desperately (my husband is an avid tea drinker) and I had a prescription ready at the pharmacy, so even though it was hot, I had to venture out to the grocery store.  I am not a fan of the heat and I admit, I felt a bit cranky; I was not in the mood to deal with the Hollywood locals.

I walked with heavy feet down our 3 flights of stairs, and immediately, as I turned the corner out of our driveway, the heat and the city crept up my neck.  50 feet north of our driveway, an abandoned leatherette lounge chair had been left to melt into the middle of the sidewalk.  It was torn and peppered with the remnants of old duct tape, and it was occupied.  A man with wildly matted hair that stuck out in haphazard tufts all around his head, was reclining in the chair, looking in my direction but clearly not at me. He wore a long black coat that matched the chair and shoes that had no laces. His hands were caked with dirt and he picked his teeth and muttered with excitement as he peed on the chair, clearly marking it as his territory. I wasn’t one to argue, so I crossed the street and continued on my way.

I got about 3 feet up the sidewalk, and noticed 2 of my neighbors sitting on a crumbling white brick wall, eating ground meat off of paper plates.  I didn’t want to be rude, so I stopped to say hello; apparently one of them had surprised the other with spaghetti, but had forgotten the sauce and the noodles.  They stared at me with sad expressions, holding their plates precariously with drug addled hands. I said I was sorry for their predicament and moved quickly along.

As I approached Sunset Blvd., a man turned the corner onto my street, pushing a large cart; in the cart was a rusted stock pot and a long box that had once held a portable electric keyboard.  When the man saw me, a look of absolute terror filled his eyes.  He let go of the cart and ran out into the street where he started unbuttoning his pants and screaming at me, “Go Go, Hurry, Goooo”.  The cart was rolling toward me and the man was in a complete panic, so I ran past the cart and around the corner to put him at ease.  When I looked back, he had reunited with the cart and was pushing it happily down the street.

The first block of Sunset looked clear, but I noticed some extremely exaggerated motion on the second block. It looked like a young girl, skipping with abandon down the street.  As she got closer, I realized it was a middle-aged man dressed in gold satin shorts ( very short shorts), and a tight white tank top with the #69 plastered across the front in red. His platinum blonde wig was teased up and his feet were adorned in furry socks and crisp white keds that looked as if they had just come out of the box.  He skipped toward me, giggling and shaking a pair of cheerleaders pom pom’s with pure joy. He stopped, smiled, and with gleaming teeth, did a quick cheer,” Yum Yum Yum, Bitch, Yum Yum Yum, Go Tiger”, and tossed his blonde hair piece onto a bus bench before dashing away down Sunset.

I made it to the market without any further interruptions and headed straight to the pharmacy.  Our pharmacy is tucked into a little nook at the back of the store and right outside is a machine that will measure your blood pressure and pulse and tell you how much you weigh.  I call it the blood pressure chair and it is often being used by older people waiting for prescriptions or just having a rest before tackling the produce section.  Today, there was a man in the chair who looked out of sorts. His shoes were torn and carried the hues of living rough, and he was wearing a filthy tattered sweater on a 100 degree day.  His face was red and his eyes looked nervous and desperate.  I found it suspect that he was hanging out by the pharmacy, but I went into the pick up area anyway; 10 seconds later, the man was standing behind me.  I bolted out the exit.

I decided my prescription and the milk could wait; clearly, a heat wave so close to Halloween was bringing the bizarre into a frenzy in Hollywood, and I had reached my limit for the day.




Encased in Glass

Welcome to “Stories from the Edge of Blindness”.  For those of you who are new readers, when I refer to Zelda (or Z), I am referring to my white cane.

Encased in Glass

My neighborhood has gone insane.  It has most definitely passed from a little nutty to totally bat crap crazy.  There isn’t a day I walk down my street or into the park near my house, that I don’t pass someone either having a full-out conversation with an inanimate object or someone only they can see, or they are throwing their rage and obscenities at me.  There is human shit on the street, mixed in with the dog shit that irresponsible dog owners don’t pick up, and corners that smell like urinals. I have to watch my dogs every minute we are out, to make sure that they don’t get into an area of grass or behind bushes where there may be human waste. Sections of sidewalks have turned into shanty towns that are populated by an array of substance abusers, down trodden and looking for safety and a sense of community; and, no matter how it may look to the outsider, these are communities.

I may sound lacking in compassion, and I can’t deny that the shit on the street grosses me out and the rage of some of the people whose paths I cross frightens me, but the communities mark a change in my neighborhood, perhaps even in the city as a whole. It is as if these communities themselves, without premeditation, are shining a light on the poverty of the city and what lies on the other side.  All over Hollywood, and other parts of Los Angeles, huge apartment buildings are being built; they are referred to as luxury apartments and charge anywhere from $3000 to $6000 a month for rent.  They are also communities; communities for the wealthy that offer gyms and swimming pools and roof decks and community rooms and super markets.  The tent communities and the luxury apartment compounds exist side by side and are built on the same premise; people looking for a place that is self-contained and feels like home.  When you strip away the filth or the luxury, human desires at their most basic, look the same.

What about the world in-between poverty and wealth?  I think it is a fence, a tight rope, a purgatory of sorts.  For me, it is one of many fences that I perch on, waiting to see which side will pull me down.  I live on fences between blindness and sight, between success and failure, and between poverty and wealth.  Are those of us who live in purgatory also a community?  Or are we in limbo, waiting to see where we end up?  Sometimes I feel like I live encased in glass, a witness to the crumbling and to the building up of my city.  Perhaps the spaces inside the glass, on the tight rope, in purgatory, are actually the best places to reside.  I ride neither high nor low.  I am comfortable and content on my fence.  Does this make me complacent?  Callous?  Naive?  Wise? Lucky?  I don’t know.

In all of the chaos and change that I witness from such a strange vantage point, the same questions come back to me.  Where does blindness fit in to the equation of the city?  Where does Zelda fit in? Does Z make me invisible or put a target on my back?  Perhaps it literally depends which side of the street we are on; which side of the fence we dip our toes over, from one moment to the next.  Or, is it most likely, that neither community can see the blind lady up on the fence, encased in glass?

#9 Winding Down

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

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.


I haven’t written a blog piece in ages, but I have been writing a lot of poetry.  My most recently published pieces can now be read in The Furious Gazelle.

I will be back to blog soon!!!!!

Spring Passes Over

Summer has cast it’s leering net over Los Angeles.  It is March and should be spring, but spring always passes us over.  Our coldest winter evening dropped to 50 degrees; hardly coat weather, but I wore my coat anyway because I knew it may be my only chance.  What am I doing here, in the home of eternal summer?  Summer is my enemy, my nemesis, the season that ignites the worst of my RP.  I check the weather forecast with dread; the numbers exhaust and flatten me.  I wish I didn’t have to go outside.

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