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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

Everyone Falls

Everyone falls.  Everyone daydreams and falls into states of preoccupation, falls into the arms of another person, falls to the ground.  Can you remember the last time you fell to the ground?  I know it happens, but how often?  Is it a story you tell about that one time you fell and were so fucking embarrassed?  Or maybe you cried?  Did you hurt yourself?  Were you drunk?  There is no judgement here. I have fallen and been embarrassed and cried and hurt myself, and yes, I have been falling down drunk. But, the falls that shake me the most, are the falls that can only be blamed on RP.  Continue reading “Everyone Falls”

A Hundred Secret Senses

Toward the end of last year, I started writing a bit more about the ways in which RP affects my physical life and tried to answer some questions.  One question that I haven’t answered, posed by two of my fellow bloggers and friends, Mandi and Tom, is about how my other senses are affected as my sense of sight is swallowed up by RP.

There are differing opinions about this.  Some people say that the idea of your other senses getting stronger is a myth, others think it is pure fantasy – who doesn’t want to be DareDevil after all? I think it is an inevitability, but also something that can be cultivated over time.
Continue reading “A Hundred Secret Senses”

On the Edge

This has been a monumentally good week for me in regard to my vision.  Finding out that I will likely maintain enough sight to be able to read and write and see the faces of those I love, has altered my path and left me feeling immense gratitude.  I have allowed myself to feel genuinely happy about this, which isn’t something I always do.  However, I am also left reflecting on how RP has and will always impact my life.

I have spent so many years on the edge of blindness, agonizing about living in this confusing place between being sighted and being blind.  I have held my breath in anticipation of being pulled from the precipice by inevitable darkness.  I have been on a wire, balancing precariously, waiting.  Now, knowing that I may never go completely blind, I am elated, but still on the wire, still faced with the confusions that come with being partially sighted.  I had resigned myself to the future I thought RP had in store for me, but now I have to figure out how to settle onto this weird middle ground, how to resign myself to the fact that I may always reside on the edge of blindness.

I am, of course, grateful for the vision I maintain, but living in what I have called the “purgatory of sight”, comes with its own set of challenges.  I am not a religious person by any means, but from what I have read, purgatory seems like a pretty fucked up place to be.  It is neither here nor there.  It is nowhere and nothing.  It is a place of invisibility, which does not hold the cool factor of a cloak of invisibility, because you can’t take it off when you feel like being part of the clear and whole picture. There is a picture and I can see it, but it will never be clear and it will never be whole. I feel stuck, trapped, truncated. But, this isn’t new.  This has been my reality for years.  What’s different is that I have been given a choice I didn’t know I had a week ago.  I can choose to focus on the good fortune of the sight I still have and may have for the rest of my life.

The landscape in front of me has at once changed and stayed the same.  I still have RP.  I am still blind and the reality of my brand of blindness is incredibly confusing.  I am still on the edge, but perhaps it is where I have always been, long before RP came into my life.  It is a crazy view from where I stand, but it is the view that gives me the words that I write and see on the page.  I can see the words on the page.  I will be able to see the words on the page tomorrow and maybe for the rest of my life.  I don’t take this lightly. I am so incredibly lucky.

 

What do you See?

Most of the time, I find that people seem reticent to ask about my vision; I don’t know if it makes them uncomfortable or if the concept of someone being partially sighted is just too hard to grasp, but the presence of my blindness often takes up a strange space in the room. When people do ask, I actually appreciate it because it gives me an opportunity to explain how RP behaves, and also because it offers a window into what I am missing visually, by seeing what others see.

Sometimes, I’ll be walking down the street and it will occur to me that I am seeing something in a way that may be different from other people. The other day, my husband and I were out walking the dogs; he was walking about 5 feet in front of me and I was looking at the back of his head, when I realized I could only see the back of his head and a bit of the tops of his shoulders.  I asked him to stop and look at me from behind at the same distance; he could see all of me and cars parked across the street and buildings to our left and a whole lot more. When you have RP, but still have some usable vision, it can be easy to forget how much you are missing visually.  I find myself lulled into a false sense of security, so I think it is good for me to get a good kick in the pants from reality when I slip off into space.

When asked what I actually see, there are a couple of tricks that I use most often:

  1. Look straight ahead.  Stretch your arms out to the side as wide as they will go, thumbs pointed up, then slowly bring them in and stop when you can see your thumbs.  You may not have to move them at all, or maybe just a little bit, before your thumbs come into view.  When I do this exercise, I see my thumbs when they are about 7 inches apart.
  2. When you are sitting in a chair, put your hands in your lap. Keeping one hand flat, palm parallel to your lap, start raising it and stop when you can see it.  You may have to raise your hand a little bit to see it, or you may see your hands resting in your lap. When I do this exercise, I don’t see my hands until they are in line with the bottom of my nose.

These exercises are by no means definitive, but they do give an idea of what it’s like to live with diminishing peripheral vision; and, in the world of RP, I actually have a good amount of vision….I think. Every case of RP is different.

I thought I might write a series of posts that give a better idea about the mechanics of RP.  If you found this post interesting or helpful in gaining a better understanding of RP, and you would like me to write more, please let me know.  If you have any specific questions, please ask.

You can also find me on Facebook and Twitter.

 

Waiting Games

For new readers:  When I refer to Zelda, I am not talking about a pet or a child or a childhood toy I just can’t seem to part with; Zelda is my white cane.

It seems I am always waiting; waiting for the next decline in my vision, waiting to hear about that poem I submitted 6 months ago, waiting for the package to be delivered from Amazon, waiting for the scale to give me good news, waiting for the next time I get to eat, waiting for the end of the day and that bottle of wine, waiting for it all to be over. And then, suddenly, something I have been waiting for, arrives.

On Monday of this week, I spent the day seeing doctors and getting tests; nothing serious, just inconvenient, exhausting, and honestly, pretty gross, so I am not going into further detail.   That said, I spent a lovely day maneuvering through the seriously fucked up American healthcare system, without Zelda.  I have been leaving her at home a lot lately; we are having a heat wave in Hollywood and I have been feeling lazy and not wanting to carry yet another thing when I go out, so Zelda gets left behind.  I may have also still been in a tiny little bit of denial, but it really is fucking hot here.

Anyway, I made it through most of my healthcare nightmare day unscathed, until I was being escorted out of the maze of the hospital by a kind, lovely and very fast walking ultra sound tech.  I was matching her pace, feeling confident striding down the corridor, and then she said, ” take a right here”, and she turned and I didn’t and the collision ensued.  When she said to turn right “here”, I thought she meant a right turn that I saw coming up about 10 feet ahead of us; the right turn she was actually talking about, I didn’t see. I had no idea what was next to me, or how close I had been walking to the wall, or how many adjoining corridors we had passed.  When she and I collided, my confidence plummeted to the ground, but I quickly scooped it up, apologized to her and told her I have severely limited vision and I really should have been using my cane.  I felt bad about almost knocking the poor woman down, but I didn’t feel embarrassed about admitting that I had a cane and that the collision was my fault because I should have been using it; it was just the truth.  If I had taken Z with me, the tech would have walked slower and I wouldn’t have been trying to groove right alone with her, feeling dangerously confident about my non-existent visual capabilities.  I took my time for the remainder of my walk through the hospital, and found a comfy chair to settle into while I waited for my husband to pick me up.

Yesterday, I was taking one of my frequent walks to the grocery store, sans Zelda, for the same reasons listed above.  As I approached the first street crossing, I thought I heard someone walking near me, but I had no idea how near. I slowed my pace a little, tuning my ears to the sounds of footfalls and rustling clothing, but when I got to the corner and reached for the cross button, I bumped into a woman who must have been just inches away from me. I still get fooled by RP a lot of the time and think people and objects can’t be as close to me as they actually are; my ears are not that well trained, yet.

The woman was super nice and friendly and didn’t seem to think twice about our collision, but it gave me pause. I realized, or perhaps I have known for a while, that my vision has gotten worse.  Decline in vision is something that someone with RP is always waiting for, but in my case there has been a lot of uncertainty about whether or not it is actually happening.  I am fortunate that my vision loss has had a very slow progression, and there have been so many times when I feel pretty convinced that I am not seeing as well,  and it turns out that my vision is stable.  This time is different. I feel the world pressing in against me; the shrinking circles of my vision have become more prominent.  But, somehow, being in the center of the decline, looking at the world with the heightened sensation of tunnel vision, I don’t feel afraid.  I have been waiting for this.

During the rest of my sojourn to the grocery store, I must have had at least 10 near collisions and people coming at me from, seemingly, out of nowhere.  I kept thinking over and over again, “I wish I had Zelda with me”.  I think I’ll take her out today, no matter how hot it is.

 

Writing Sample Part 4 – Surrender

It’s impossible to think about going blind without thinking about loss.  When you have a degenerative disease like RP, the loss comes in unpredictable bursts that steal pleasures and pluck freedom from disappearing fingers.  In the weeks just after my diagnosis, I thought a lot about how my life would change and what blindness would take from me; I was most afraid of losing the ability to read the printed word.

 I have always loved words; the way they can simultaneously smooth and sharpen the page. A life that leaves me unable to see the printed word is unimaginable.  I feel paralyzed by the thought of no longer seeing how the shapes of the words meld and flow.  I wonder what kind of writer I will become when the pages turn dark. Perhaps I will learn to rely solely on the musicality of language; the taste of the words in my mouth and the feel of their vibration on my lips. I am sorrowful when I think of no longer taking the words in with my eyes, but I will read voraciously until the darkness has swallowed them up.

Although the loss of the ability to read was my greatest fear after RP became part of my life, one of the most significant rites of passage in an RPer’s life is giving up driving.  I was a terrible driver, for now obvious reasons, and always felt anxious behind the wheel, but I have definitely felt the loss of freedom since I gave up my car for less convenient forms of transportation.

Because one of the first things that alerted me, and the doctors, to my RP was decreased night vision, the consequential difficulty led me to stop driving after dark immediately following my diagnosis. The combination of the darkness and the glaring lights of oncoming cars made it so I simply couldn’t see well enough to drive safely. In truth, it hadn’t been safe for years:  I had just been lucky.

I had also, in daylight hours, had several run-ins with walls, poles and curbs that seemed to jump out at me from nowhere.  This started serious contemplation of whether I should continue driving at all.  Walls and curbs only hurt my car, but what if it was a child or an animal that I didn’t see?  I couldn’t bear the responsibility of hurting someone just because I didn’t want to give up my car; so, about seven months after my diagnosis, I gave up driving altogether.

When I decided to give up driving, I chose to surrender my license and make the rite of passage official; I had no reason to hold onto it when I knew I would never drive again.  I needed to make it real.  I suppose it was my way of dealing with the loss head on, not allowing myself to live in denial about the gravity of my disease and how it was going to continue to change my life.  I was empowered because I took charge of the decision and I knew I was doing the right and responsible thing.  I felt the loss, but it was intermingled with a sense of relief.

It the first couple of months without my car, I joked about how lucky I was that I never had to be the designated driver and how I had always been a lousy driver anyway, so no big deal that I would never drive again.  True statements, but I also started to see how my disease was a burden to the those around me, and how I was going to become less and less practically useful as the years and the RP progressed.

I hated listening to my family agonize over who would drive me home after a family dinner, knowing how tired they all were.  I hated knowing that once I arrived somewhere, I was stuck until someone else was ready to leave; I had lost the freedom to come and go as I chose and because of this I became more reclusive.  I didn’t want anyone to have to take care of me.  I was determined to take care of myself.

My family never complained and I knew that they were just trying to make things easier for me, but I needed to find a way to assert my independence.  I had always had a fiercely independent nature and I wasn’t going to let RP rob me of that.  So, I learned the ins and outs of the LA transport system, which is no small feat given that it is the worst in the country.  I remember the first months of riding the bus, looking out the window at the enraged faces of the drivers in their cars, and feeling lucky that I got to spend my ride home listening to music, far away from the stresses of road rage and blaring horns.

Surrendering my license ended up saving an important part of who I am, and showed me that my determination means something.  And let’s be honest, L.A. busses are full of stories dying to be told.

Across Town

*Note to new readers: When I refer to Zelda, I am not referring to my pet, child or doll, but to my white cane.

Across Town

A few weeks ago, maybe a month, I rescued Zelda from her hiding place on the hat rack and I have been carrying her with me whenever I go out, but she has remained folded up and tucked safely into her case.  I figured that eventually, I would encounter a situation where my anxiety about not being able to see would outweigh the anxiety looming over me about using Zelda.  I have, over the past month, found myself thinking about freeing Z from her case, and even wishing I had due to a few collisions and subsequent bruising, but she stayed put…until yesterday.

Most Tuesdays, I visit my Dad and Stepmom at their house across town, and on the days when my husband can’t drive me, I often feel anxious and start procrastinating when it gets close to the time I have to leave; even more so since Zelda became a part of my life.  I always thought that the anxiety was due to the thought of taking an Uber or Lyft; I see the convenience of both services, but I just don’t feel comfortable being alone in a car with a stranger.  I also thought I was being lazy because the bus is a hassle, but it became clear to me that part of the reason I get anxious is because taking the bus means a greater chance that I will need Zelda.  Yesterday was a gorgeous, cloudy day with chances of rain, and although I love these kind of days, they can play havoc with my vision; even though the clouds darken the sky, if there is any light at all, I need to wear my hat and sunglasses, which makes things even darker.

RP is such a tricky disease.  I have night blindness and trouble seeing in dim light, but sunlight or any kind of bright light also blinds me, and hurts like hell.  So, on cloudy days, I am faced with the choice of my vision being lessened by dark glasses or going without them and suffering from any amount of glare.  I almost always choose the sunglasses, but my nerves get a bit jostled either way.

Yesterday, after far too much time given to agonizing, I decided to take the bus, even though I felt certain that Zelda would have to make an appearance.  I walked out into the deliciously chilly day and travelled the 2 blocks to the bus stop, keeping Z in her case.  I have lived in my neighborhood for a long time and have a, most likely false, sense of security when it comes to knowing the layout of the streets; in any case, I felt like I didn’t need Z to help me to the bus stop and I got their unscathed.

Although there is a bus that gets me within a mile of my Dad’s house,  I usually take 2 busses because of a frightening incident that happened not to long ago; you can read about it here. But, yesterday, I was running late and I knew the traffic would be horrendous, so when the first bus to arrive was the one I don’t need to transfer from, I got on.  My anxiety was now doubled; I was anxious about Zelda and watching everyone who got on the bus to make sure no one was particularly frightening.

Even though it was Halloween, the ride across town was pretty tame, and by the time I got to my stop, I felt confident that no psycho killers were going to follow me off the bus; I got off and started the mile walk to my Dad’s house.  It had started sprinkling while I was on the bus, so the ground was wet and the sky had gotten darker, but still I kept Z safely tucked away.  About 300 feet from the bus stop, I came to an underpass that I had to enter in order to cross the extremely busy street to get to my Dad’s neighborhood.  I hesitated, but only for a few seconds, then reached behind me to get Zelda.

This was exactly the kind of situation I had been waiting for; I looked into the darkness of that underpass and I knew I needed help.  I knew that having Zelda in that moment would alleviate my anxiety, and it did.  I zipped through the underpass, across the busy street, and into my Dad’s neighborhood, with Zelda leading the way.  I felt liberated, but more importantly, I felt confident and safe.

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.

 

 

 

Reluctant Side Kick

*To new readers: When I refer to Zelda (or Z), I am writing about my white cane.  Thank you for reading “Stories from the Edge of Blindness”

Reluctant Side Kick

Zelda and I have reconciled, again.  I suppose we are together for better or worse, but I am still her somewhat reluctant side kick, reluctant to give in and give over to her, to let her lead the way, but, my self guidance system is seriously faulty.

Joe and I were grocery shopping the other day – before I rescued Z from beneath a mound of coats and hats and bags, on the hat rack and I collided with a shopping cart that someone had left in the middle of an exit isle.  It wasn’t a bad collision; I was just left with some bruises on my legs, but when it happened, I looked up at Joe and said,”I guess I could have used Zelda today”.  He just smiled and nodded and we left the store.

As a result of this particular collision, I had to admit that I have been treating Joe unfairly.  Whenever we go out together, I depend on him to keep me from collisions and falls and the always possible rage of strangers, but what about Zelda?  If I had Z with me, Joe could shop and walk and roam to his heart’s content without having to worry about me the whole time.  I have been so selfish.  I have been telling myself that using or not using Zelda only affects me, and that simply isn’t true.

So, I have put Zelda back on a prominent hook, next to my purse and sweater, so I will be reminded to always bring her with me. I don’t want to need her, but sometimes I know I will, and when I no longer have the amount of useable vision I have now, I will be grateful that she and I have become well acquainted.

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