Stories From the Edge of Blindness

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


November 2017

Writing Sample Part 2 – Dx Day

In re-reading what I sent in as a writing sample to the Emerging Voices Fellowship, I can understand why they didn’t choose me to be one of their 5 fellows (but they are still fuckers).  I think the pieces have good bones, but I could weave around them more creatively to make the stories more intricate.  Editing and re-editing and re-editing again is just part of being a writer, and it is actually a part I don’t mind too much.  That said, I am still going to post what I sent to them.

Dx Day

Visual Field

On the day of my formal introduction to Retinitis Pigmentosa (from here on out affectionately referred to as RP), I woke up to a chilly five a.m. alarm, took a quick shower, threw on lounge around the Eye Institute clothes, and waited for my dad to pick me up. The day began with a series of scary sounding tests; well, let’s face it, tests by any name sound pretty scary and I had a history of doing lousy on tests.

The first test of the day was a Visual Field, but with a twist. Rather than being scored by a computer, I got a live proctor. Damn, there would definitely be no cheating. During a Visual Field, you are asked to place a sterile patch over one eye, stick your face into a large white dome and press a button each time you see a flashing red light. Sounds simple, straight forward, totally passable. It sucks.

The proctor instructs me to stick my face into the dome and asks if I can see the big red light in the middle, then tells me to focus on it for the next fifteen minutes, with one eye, while pressing a button as other red lights flash in the distance. Instantly, I feel an impossible urge to blink and my eye starts to dry up. I am really trying to focus on the big red light in the middle, but it keeps disappearing; and then I remember the flashing red lights that are supposed to be appearing with some regularity, but they seem to be on hiatus. Then, right there in front of me, like a beacon of hope, I see a big red flash……or I think I do…….so I press the button, hoping that I answered correctly. 40 minutes later and both eyes tested, I am excused; sore neck, dry eyes, and fuzzy red lights flashing all over the room.  One down………

ERG – Electroretinogram

After the visual field, I was led further into the basement maze of Jules Stein Eye Institute, to the second waiting room of the day.  The room was empty, except for a weary mustard yellow couch.  The air smelled like doom.  I don’t remember how long I waited; I was only aware of the quick rhythm of my heart.  After a time, a woman with bushy hair and a staccato voice came into the bleak room and called my name, looking at me with a hurried and impatient glance.  She ushered me through a creaky beige door that led to a dimly lit room with whirring, then unfamiliar, machines.  She asked me to sit in a chair so she could put drops in my eyes, and told me I was lucky to be there; patients came all the way from Egypt to see Dr. Heckenlively.  I was feeling anything but lucky and had yet to actually meet the infamous man.

After two sets of eye drops were administered, the bushy haired woman led me to a small room with a black leather couch and told me I had to wait there until the drops took effect.  She closed the door and turned out the lights.  The room was pitch black.  I had no idea why I had been locked in this dark room with the lilting voice of Sade telling me she would never leave me sad; all I knew was that I couldn’t see my hand in front of my face and I was terrified.  Pure darkness removes the security of boundaries, the familiarity of edges; it swallows everything. Was this what my future held?  This total darkness that made the world impossible, overwhelming and immense.  I waited for my eyes to adjust to the dark.  That day, in that room of pitch and fear, I learned about night blindness and that RP eyes don’t ever adjust to the dark.

The tech returned after an interminable 30 minutes and opened the door; the room was bathed in red light and I couldn’t see her face, but felt her take my arm as she proceeded to guide me into the torture chamber.  She sat me down in a chair akin to the kind you find in a dentist’s office; this should have been a warning sign to run, but how can you run when you can’t see?  I was at her mercy.  She put two more sets of drops in my eyes, slathered them in a cold gel and then inserted plastic disks under my eyelids.  “So you can’t blink”, she said.

“So I can’t blink?” I thought, “What the fuck?”   I felt like I was in a Stanley Kubrik film.

She led me, and my unblinking eyes, to another chair and helped me find the chin rest at yet another entrance to one of those strange domes.  “Lean forward and focus on the red light”.  Five seconds, ten, thirty…….wham.  Bright white lights shot out of the walls of the dome, assaulting my eyes and stabbing at the limited fields of my vision. This happened multiple times, each burst brighter and more intense than the next.  It was so painful, my bottom lip and chin started to spasm.  And then, the machine stopped and I was once again, in darkness.

“You’re all done”, she said, sounding chipper.

I wanted to shove plastic disks under her eyelids and see how chipper she’d be then.

The Man Himself

After the Clockwork Orange experience, I was dismissed for lunch.  I walked out of the test room, with help from the tech, and met my dad out in front of the Jules Stein building.  I felt pretty traumatized at this point and my eyes were sore and watering, vulnerable to the assault of sunlight. We went into Westwood Village and ate Greek food and I tried to keep a smile on my face; I knew my Dad was almost as scared as I was.  We waited quietly for the final appointment of the day; I was finally going to meet Dr.  Heckenlively.

I couldn’t help but wonder, what kind of man comes with the name Heckenlively?  When I first heard the name, five years earlier, I knew I would never forget it; it is hardly an unforgettable name. I imagined Heckenlively to have a jovial disposition, to be kind and of course a total genius who was going to give me hope of a cure for my rare and unique disease. I thought he would be a bit portly in stature with gentle hands and a slow easy voice. He would exude warmth and compassion. He would spend time with me, explaining the intricacies of RP and comforting me in my time of distress; or maybe he would tell me I didn’t have it, maybe he would tell me it had all been a big mistake.

When we returned to Jules Stein, we checked in at a huge reception desk in the Retina Clinic and I was taken into another room for more drops; this was the fourth set of dilation drops I received and apparently this last set was just for good measure.  My pupils were not happy. Back in the waiting room, I had to keep on my sunglasses and couldn’t read a magazine, so I just looked around at the other patients waiting for their fate to be served up by the illustrious Heckenlively.   There was no pattern to the population of patients in the waiting room; no predominant age, race or gender.   RP doesn’t discriminate.  There aren’t many of us who have it, but we come in an array of packages.

One person from that waiting room stands out most clearly in my memory.  He was a young African-American guy, maybe in his twenties, tall and athletic looking.  He was sitting between two older people who looked like parents; his head was bowed and his hands pressed against his eyes.  I knew he was a first timer, like me; I knew he was waiting to be told that he was going blind and I knew that he had realized the months of hoping for a different outcome had been fruitless.  It was the first moment that day that I didn’t feel so alone because I knew he understood exactly how I was feeling.

I think we must have waited at least an hour, watching men in white coats disappear behind mysterious doors, patients with anxious and terrified faces startling at every entrance.  Finally, they called my name and my dad and I followed a nurse into one of the secret rooms; I almost felt guilty leaving everyone else behind.  The room was dim with another one of those pseudo dentist’s chairs filling the middle of the ominous space.  The nurse told me to sit there, and I was tempted to tell her to go fuck herself, but I looked to my dad for some courage and took my allotted place.  The nurse left and about ten minutes later, the door opened again.

Dr. Heckenlively wasn’t what I had imagined or hoped he would be.  He was tall, lean and middle-aged, with a Hitler mustache and a cold demeanor. He looked like a sadist.  I knew instantly that this man was not going to be my savior or my champion or my friend; I was just another blind number. I remember he shook my hand curtly, barely looking at me, and then sat down to take a history.  We didn’t have much to tell him; no one in my family had any hint of vision impairment. With no obvious genetic ties to RP, I was obviously a boring case for him.

After the history, he turned to me and flipped the dentist’s chair back, coming at me with one of those super power head lamps that eye doctors tote around.  He examined my traumatized retinas for maybe five minutes, flipped the chair back into place and told me I had RP.  On his way out the door, he casually mentioned that someone would be in to take a blood sample, just to rule out syphilis.  That was the one and only time I would meet Dr. Heckenlively.

That afternoon, I was given a day of torture, 10 minutes with the expert, a heartless delivery of my diagnosis, and a lifetime sentence of imminent blindness.

Writing Sample Part 1 – Retinitis Pigmentosa

Along with my application for the Emerging Voices Fellowship – that I didn’t get (fuckers) – I had to send in a writing sample.  I felt compelled to share the pieces I sent them, so this will be the first of 5.  If you know me well or have been following my blog since it’s inception, you may recognize some of the stories, but they have been edited again and again since their original appearance.

*Retinitis Pigmentosa (RP): A group of inherited disorders in which abnormalities of the photoreceptors (the rods and cones) of the retina lead to progressive visual loss. Abbreviated RP. People with RP first experience defective dark adaptation (night blindness), then constriction of the visual field (tunnel vision), and eventually, late in the course of the disease, loss of central vision. 

 The first time I heard about Retinitis Pigmentosa was from Barbara Walters. She reported a story on 20/20 about a family whose father and three children all suffered from a rare eye disease that caused something they called “tunnel vision.” I remember all the kids were very blonde, with extraordinarily bright blue eyes and pale skin; it was as if they were rarely exposed to the sun.  The program attempted simulations to show what an RP sufferer’s deteriorating vision is like, and it was terrifying; can you imagine your entire view of the world being the size of what you see through the hole in a straw? Knowing that the hole would get smaller and smaller until everything was darkness?  I remember feeling frightened and sad for the family, and thinking how lucky I was that everyone in my family had such good eyes.

The second time I heard the words Retinitis Pigmentosa, I was in my late 20’s and visiting my optometrist for a routine refraction. I was there to get some new glasses because my night vision seemed to be worsening; not unusual in nearsighted patients.  He asked if he could dilate my pupils and take a closer look inside my eyes. The exam only lasted about ten minutes, but it seemed like an hour.  It was only the second time my pupils had been dilated and it was excruciating. The bright light from his instruments felt like fire and my eyes burned.  When he finally finished the exam, he said something about bone spicules in my retinas and a rare genetic disease that caused blindness. He referred me to a specialist named John Heckenlively.  I nodded my head, pretending to understand what the hell he was talking about, took Heckenlively’s number and proceeded to blow the whole thing off. There was no way I could have some random, rare eye disease.  No one in my family even wore glasses; except me of course.

Fast forward about five years; I am walking out of a Borders bookstore heading toward my car, and as I turn a darkened corner, the sidewalk in front of me disappears. It was like the darkness had consumed the ground beneath me. I stood there in abject terror for a few minutes, until I looked up and found a street light shining dimly a block away. I rushed toward the light, telling myself to call the eye doctor in the morning.  I obviously needed some new glasses.

Two days later I am in the Ophthalmologist’s waiting room, filling out-patient forms, and I come to the question about previous problems with eyes. I hadn’t thought about my visit to Dr. Vogel, the aforementioned optometrist, or Retinitis Pigmentosa in five years, but sitting in that waiting room I remembered, and I think at that moment I knew something was wrong, something that couldn’t be fixed with new glasses. That afternoon I had my first visual field test and was once again referred to Dr. Heckenlively. This time I couldn’t ignore it.

Five months later, I was formally introduced to Dr. Heckenlively and Retinitis Pigmentosa.

The In Between People

I never understood morning people; up with the sun, fresh start to the day.  Maybe it’s  because the sun has always felt like my enemy, or that I woke up hung over (a lot), or maybe I have always been a little bit off kilter, out of step and misshapen. I could never find a rhythm among the sun worshipping masses.

I was the quintessential night person; awake until 2 or 3, getting up anywhere from 11am to 2pm, depending on how much I drank the night before.  I loved the feeling of decadence that came with being awake when risk was alight in the city, and anything could happen.  I reveled in the quickening pulse of everything that comes after midnight.  I felt alive and creative in the late night hours.  But, time has a way of fucking with you, speeding  by so fast that one morning you wake up, middle-aged, hung over and feeling like crap. The hours beyond midnight have lost their allure.

So now, at 48, I am an in between person;  I get up at 4am, when the city is at its most quiet and the darkness protects me from the clamor and chaos of the sun. The world is so still, I feel illicit and delicious, a willing trespasser.  4am doesn’t feel like morning or night, but breathes beautifully somewhere in between; it is an introverts safe haven, a time for creativity to be uncloaked.I feel energized by the silence so early in the morning and empowered because I am awake for the arrival of the sun, rather than assaulted at noon by the strike of its barbs through cracks in the curtains.

I am writing more than ever now, in these hours when I feel like the world is all mine.  I sit at my desk, in love with the fingers of darkness, getting lost in the words; I watch the day tumble softly in through the windows, grateful to be one of the in-between people.



Rejections Aren’t Created Equal

Even though I talk about only needing validation from myself and how the writing is enough – and I do believe these things – I still have those aching moments where I search for validation from the outside, and feel crushed when I don’t get it. I guess my rejection skin isn’t quiet as intact as I would like.

The thing is, all rejections are not created equal; and it happens that the last two I got really fucked with my head.  The first I wrote about in my post Rejection Skin, the second was just a few days ago when I got turned down for a fellowship.  It was the first time I had applied for any kind of fellowship and I have to admit, I actually believed I had a shot.  The fellowship is The Emerging Writers Fellowship through PEN America; it would have been 6 months of writing classes and private mentorship and networking – it would have been great.  Apparently there were an unprecedented number of applicants this year and only 5 spots available, but that doesn’t make me feel any better. Why wasn’t I one of the five?

When I got the email telling me they were sorry to inform me etc. and blah blah blah,  I told my husband I was ok because I had been feeling like I didn’t really want to make the commitment anyway, but later that evening I started to get really upset.  I realized that the fellowship represented a kind of validation that is different from getting published.  I come from a very high achieving academic family, and because the fellowship would have been an academic thing, I believed it would validate me in my families eyes.  I felt so ashamed to have failed and I didn’t want to tell them.  This rejection went much deeper than a lack of confidence in my writing; it triggered old feelings about whether or not I have any value as a person. I know that the shame is about my own perceptions of how I don’t fit into my family, but those perceptions have roots that are stubborn and strong.

My feelings about this rejection were also tied to my RP. The project proposal I gave for the fellowship was basically turning “Stories from the Edge of Blindness” into a book; it was everything I have been writing about here for years and all the ideas I have had about telling my stories; the rejection made me feel like my experiences are insignificant.  Basically, this rejection knocked me to the ground.

It has taken me a few days to bounce back, but I have come away from the blow with some renewed strength and resolve.  I am not looking to be told that my writing is great; what I write and how I write isn’t for everyone, and that is ok, it doesn’t have to be.  Fellowship committee members and editors and publishers are all people with specific tastes, just like me and every other person on the planet; they may not like my work and I may not like what they write, but isn’t that the beauty of art?  If all art appealed to all people, it wouldn’t have the profound impact that it does.

I am not looking to hear that my experiences and stories matter to the world; they matter to me and I feel like sharing them.  I know that outside opinions don’t validate me and that my family loves and supports me because of who I am, not how accomplished I am in the world.  If I want to, I can apply for the fellowship again next year, or not; either way, I won’t stop writing.  It is who I am and what I choose to do.  I am excited by words and the magic they weave, so why would I deprive myself of writing just because someone I don’t know doesn’t like my work?  I know there will be other rejections that hit a little harder than most, but now I know that I can deal with them and that I will always keep writing.


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.

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