Remembering David Rakoff

In 2012 I saw David Rakoff give this talk and performance, three months before he died. I just heard it again, rebroadcast on the radio, and found a video of it that I've put at the bottom of this post. A lot of what he says resonates with me both as a person of difference and as a person of dis/ability:

It was an exercise in humiliation and trying to make myself as invisible as possible. 

That was how he felt going to dance classes as a young man. That was how I felt in gym class as a kid. The difference between us that as a kid in gym class, I was coming to terms with disability, and the young David Rakoff wasn't. Not yet.

On becoming dis/abled, he says:

Everybody loses ability—everybody loses ability as they age. If you're lucky, this happens over the course of a few decades.

David Rakoff's "if your lucky" referred to his cancer and resulting string of operations, the last of which left him with a flail limb, meaning that he could neither move nor feel anything in his left arm. His descriptions for accommodating to this disability, though different from those that a person with low vision performs, are pretty familiar in their perfunctory absurdity:   

If I retained anything from dancing, it's a physical precision that certainly helps in my new daily one-armed tasks. They're the same as my old two-armed chores. They're not epic or horrifying. Some of them don't even take much longer, but they're all to one degree or another, more annoying than they used to be, requiring planning, strategy, and a certain enhanced gracefulness. 

Oral hygiene: Hold the handle of the toothbrush between your teeth the way FDR or Burgess Meredith playing The Penguin bit down on their cigarette holders. Put the toothpaste on the brush, recap the tube, put it away... Then reverse the brush and put the bristles in your mouth, proceed. 

Washing your right arm: Soap up your right thigh in the shower, put your foot up on the edge of the tub, and then move your arm over your soapy lower limb back and forth like an old-timey barbershop razor strop. 

Grating cheese: Get a pot with a looped handle, the heavier the better. This will anchor the bowl that you want the cheese to go into. Put the bowl into the pot. Now take a wooden spoon and feed it through the handle of the grater and the loop of the pot, and then tuck the end down into the waistband of your jeans. (Clean underpants are a good idea.) Jam yourself up against the kitchen counter and go to town.

In memory, here's David Rakoff's complete talk and performance:

After he died, This American Life ran an hour-long tribute to David Rakoff's life and work. Listen here.

Illegible + Unintelligible = The Same Sandwich

My favorite neighborhood eateries are run by artists. Each establishment offers its own aesthetics through a certain curation of cuisine and atmosphere. There's usually good music playing on the stereo, local work by a roster of painters and printmakers on the walls, and bulletin boards plastered with tons of flyers for community happenings. The food and drink these places present are little works of cheap, culinary art, reliably tasty and satisfyingly filling. And among the art adorning the walls are some bits related to the food, most notably the menu and a mish-mosh of notes tacked onto that menu as addenda. It's truly beautiful. And utterly unreadable to a visually impaired person.

I use "unreadable" as an umbrella term that has two distinct parts. One part is "illegible", meaning that I can't read it because the writing is too far away, or the fort is too irregular, thin, or faded. This is an optical thing, meaning the part of vision that happens in the eye can't distinguish the images being presented to it.

The other half of "unreadable" is "unintelligible", meaning that my I can't process what's going on because having all these add-on notes and things arranged in a nonlinear, scattered fashion makes stuff hard to read, even when the font is legible. This is a cerebral thing, related to the part of vision that happens in the brain not distinguishing the information being presented to it.

Low vision can be a cocktail of optical and cerebral malfunction. People who were once blind and then obtained vision often cannot deal with the brain part of seeing, even though their eyes have been made to work fine.  My situation is less extreme, and I've taken to snapping pictures of menus. I use my phone's screen to magnify each menu item, but then sometimes can't make sense of what I see. Meanwhile, everyone around is ordering, and pretty soon it's my turn.

"What''l you have?"

The same sandwich I had last time.

Wrong Hunch

I have a new friend who tends to hunch. I thought that her stooped posture was maybe because she's tall, but then I found out she's extremely nearsighted. Guess my hunch was wrong about her hunch.

Triple Dissed

Funny how this year, as I've been focusing on my primary dis/ability, I've taken on some others for short stretches of time. Back in May I was walking with a cane for a couple weeks, and in April I lost my voice for a few days. And now I can't hear out of one ear due to an infection brought on by a flu that had me totally immobile for a spell.

Not seeing so well can be a bit disorienting, but hearing every sound come at me from one sound only amplifies that experience. Usually when someone calls my name, I know the general direction the voice is coming from and can wave over that way regardless of whether or not I see who it is. But that's blown for now. 

I'm realizing why a lot of people adapting to shifts in ability prefer to stay home: it's a source of embarrassment, a pain to explain, and very vulnerable territory both physically, socially, and emotionally. Going to the clinic to get my ears examined turned me into a three-ring circus of dis/ability, performed multiple times for receptionists and medical assistants and doctors. I need help filling out the form and repeat what you said please and boy do my joints ache right now. 

I've learned not to apologize for any of this stuff: I never say "sorry" for not being able to see because that's not my fault. Some of the people who work at these places are learning not to apologize either, and that's good because my dis/abilities are not their fault either. An apology is an empty substitute for help and as a person with a dis/ability (or two, or three, depending on the day) I'll take a singular act of help over a hundred apologies.

Good news is: flu is gone, no more body aches, but I still can only hear out of half of my ears. And of course I can half-see out of both of my eyes.

Stay tuned!

Not Quite Face-Blind, Not Quite Blind

Last night we opened CONES to a big and friendly crowd. I can't really see anyone during the show (and if you've seen CONES or kept up with this blog, then you know why), so I invited everyone to come say hi afterward. Even when people I know come up to me one by one, it can take me a moment to figure out who folks are, especially people I don't see often. The irony is that I've written this blog and made this show about being in between sighted and blind, and immediately afterward everyone gets to test it out—each of them once, me over and over again.

A few months back I wrote about prosopagnosia, or face-blindness, a neurological condition that I do not have. Here's another podcast about face blindness from the excellent Aussie/Kiwi programme Paper Radio. In this one a guy name John shares firsthand accounts of the split between intelligence and emotion that comes with face-blindness. Again, even though our conditions differ, I relate strongly to John's experiences, especially in his having an undiagnosed condition and then discovering what it is, and also about the process of passing and having a coming-out ceremony.

• Download audio

CONES runs for two more nights in Philly. Details here.

A Battlefield of Bad Eyes

"If blind students can earn college degrees, surely we can make arrangements so that myopic children can see the blackboard without resorting to glasses. They can be allowed to sit in the front rows, the teacher can write larger, the blackboard can be better lighted." — Donald S. Rehm, The Myopia Myth, 1981, 2001.

In building out a science report scene for CONES, I researched some stats on eyeglasses. Though the numbers don't always add up and vary from source to source, the consensus is that most adults now wear glasses, and that the number of North Americans with myopia (nearsightedness) has just about doubled in the past 50 years. Most sources agree that the uptick in myopia is due to people spending more time indoors looking at screens, and that more "traditional" activities (i.e., hunting and farming) would be a way for people to prevent myopia.


What people disagree on is what to do to treat myopia. Modern optometry leans toward "correction" through prescription, and a lot the websites advocating for this are run by prescription lens companies and optometrists who do not mention vision therapy and lifestyle changes that could help strengthen the eyes. Meanwhile, more people are asking, "Do glasses make my eyes worse?" The optometry professionals at the top of a search results who say, "No," primarily defend glasses as a solution by citing age-related presbyopia, or farsightedness resulting from the harding of our lenses (the natural ones in our eyes just behind the cornea). But what about the myopia that more and more of us are experiencing earlier in life?

Donald S. Rehm, an engineer and founder of the Myopia Prevention Association, has an interesting treatise on how corrective lenses can make myopia worse. Rehm presents some good optical science and relates it to eye physiology to demonstrate how lenses typically prescribed for nearsighted people can do a lot of damage in attempting to correct a person's vision. While Rehm's view (and earlier, Dr. William H. Bates, who advocated for getting rid of glasses) is unpopular in mainstream optometry, it opens up many questions that many conventional eye doctors have long been silencing: Why has myopia been on the rise? And why do most people with myopia need to get stronger lenses every year?

My experience as a person with myopia is that optometry has been a battleground between these two camps. People like Rehm and Bates (who don't fully agree with each other), or vision therapists like Meir Schneider, are cast to the fringes for their outspokenness (and it doesn't help that most of these guys' websites look like they were designed by 8th graders in the mid-1990s). Many other functional optometrists share these dissenting views, but have learned to keep quiet about it in order to continue working. This is very upsetting to those of us with severe myopia, left as casualties on this battlefield, not knowing whom to turn to for support. This blog and the piece I'm making are a step toward finding that support.

Why I'm Paying for Typos

Of all the cool things that eye doctors use to test people's vision, none is a better indicator of what's going on in the retina than this simple grid devised by Professor Marc Amsler in 1945.

Cover one eye and focus the other on the dot in the center of the grid:

What do you see? And what don't you see? What's great about the Amsler Grid is that we know that it's a grid—a big square made up of smaller, evenly-sized squares separated by horizontal and vertical lines. But is that what you see? Try it with the other eye.

When I look at an Amsler Grid, here are the sorts of things that happen for me:

To my eyes, entire line segments are missing and others are distorted into moving, twisting shaped, indicating blind spots in the retina. Some of this is normal—the optic nerve occupies a chunk of space in the human retina causing a blind spot in everybody's eyes. The Amsler Grid lets us know where that spot is, and any distortion is what the brain does to fill in the gap.

My grid is bit more extreme because of the dystrophy in my retinal cells, and while the Amsler Grid demonstrates that clearly, it's also happening to everything I look at, including more irregular shapes like printed words. 

If you've read this blog, you've probably seen my typos and articles about them, and this week I had two more that were costly: The poster for CONES came back with "donation" spelled "doantion". No big deal—I'd only printed a dozen. But when 500 palm cards showed up with the wrong date on them, I had to fork out for a reprint:

JUNE 24 = WRONG DATE

JUNE 23 = CORRECT DATE

I had three different people proofread the graphic before I sent it off. No spelling mistakes, just an incorrect date that wasn't spotted. Anyway, they're back from the printer and they look great. Hope you can make it to the show. Just don't show up on the 24th.

Seeing Spots

Dr. Shinobu Ishihara created some of the most beautiful designs of the 20th century. Large spots composed of seemingly random patterns of smaller dots in various diameters and colors. I looked at them occasionally as a kid, wishing that I could have them to keep, as wall paper or curtains or clothing. But the only time that I was permitted to look at Dr. Ishihara's artwork was when I visited the eye doctor.

To me Ishihara's colorblindness tests have the chaotically gorgeous aesthetics of chameleon skin: a jumble of tiny scales whose pigmentation tends to change over time. But someone with better working cones receptors might see numbers or shapes embedded in these designs.

Do you see numerals embedded in these dots? I don't, at least not on the examples I've given here. I do a suggestion of numerals in some of these patterns, but in none of these could I tell you (or an eye doctor) what they are.

For folks with fully functioning cones, this example can clue you in as to what I do see. On the far right is how a person with X-linded reg-green colorblindness might see an Ishihara image with mixed pigment dots—that's not what I see. I'm the example in the middle—"partially colorblind"—and, truth be told, the leftmost image and the center image look identical to me.

When was your last Ishihara test? You can take one version of the test here. 38 plates, starting with number identification and then moving onto counting squiggly lines. It tracks all your answers and then grades each one as "correct", "partially correct" or "wrong", comprising an overall rating of red-green color blindness. I felt like my color blindness was strong, but it rated me as "moderate". If you take the test, I'd love to know your results and experiences. Leave them in the comments below.

The Problem With Beige

I usually practice yoga on a mat made from jute, plant fiber that's used to make burlap. I just acquired some pants, also made of natural fiber, that I practice in, both the mat and pants are similar in tone to my skin:

Sometimes when I'm practicing and the light is a certain way, I cannot see my own hands or feet. And now with these pants my legs have disappeared as well. 

Double Dissed

I just spent a few days with laryngitis. At its worst, I couldn't speak at all, and so I went out with a stack of index cards and a Sharpie in my pocket. Whenever someone said "hi" to me, I held up the first card, which read, "I have laryngitis." If they wanted to converse more, I could write notes on the index cards.

It was interesting navigating the world with two disabilities, one chronic that I keep less visible (having low vision) and one temporary that I chose to make visible (not being able to speak). And once we broke the ice, laryngitis had its perks. People found communicating with me to be interesting and entertaining, and I played this up, making it into something of a performance. In the park, someone offered to buy me sorbet, and then the guy selling it refused to take any money for it. When "talking" to my friend who works with visually impaired people, I wrote on a card, "We're all temporarily abled," and then she told me that this laryngitis might be more of an ability than a disability for me because I could take my time to say what I wanted to say, draw pictures, and then have a record of that correspondence.

On the way home from my night out as a laryngite, I gave out some of these cards to people, odd anthropoetic documents of my conversations with others. When the trolley reached my stop, I rang the bell, but the driver shut the doors before I could get off. I called out, "Rear door!" but he couldn't hear me because at the end of the day, I had no voice.

Three visually impaired people walk into an ice cream parlor…

Tonight the person behind the counter read the flavors off to an 8-year-old girl and a man with a white cane. They didn't know each other, but both had strabismus (eyes that turn out from each other). The man bought the girl a milkshake and then a cup of ice cream for himself. I sat with him, introduced myself and told him I had low vision too but don't use a cane. He explained that in his home country of Argentina, people who are completely blind use white canes and people who are visually impaired but have some vision use green canes so that others know to ask, "How much can you see?" Argentina passed their Ley del Bastón Verde ("Green Cane Law") in 2002. Why not do the same in the US? It would help visibilize we the in-between, las personas con baja visión, or people with low vision.

Blind Book #1: Girl in the Dark

Anna Lyndsey isn't blind, but she lives in the dark because of her acute photosensitive seborrhoeic dermatitis, an illness that makes all contact with light feel like a blowtorch on her skin. While most blind folks can walk out into the light, they just can't see much, Lyndsey could see were she able to exist in the light. Have a listen to this chapter, "Metaphor", in which she reviews a handful of audiobooks whose protagonists have something in common with her. She also reviews a couple of new age healers and offers a game:

Games to Play in the Dark 5: Scribe 

This is a game to play on your own, when talking books have palled, when you have no visitors in prospect, when boredom eats your brain. 

You will need a large bound notebook and a pencil. A bound notebook so that your pages are disciplined and do not become entangled. A pencil, because a pen could run out and in the dark you will not be able to tell. 

Pick up your pencil and open your notebook. 

Place the thumb of your non-writing hand on the page beneath the start of the first line. 

Your thumb will act as a marker, so that there will be space between each line and the next. 

Write. 

Write what? 

Write what you know. Isn't that what they say? What you know is the darkness. 

And as you begin to form words on the page, the darkness around you moves. It starts to gather, to circle, to form a vortex round the end of your pencil, and then — down the pencil's black centre it pours. 

It is unstoppable. It flows faster and faster, funneling down that slim conductive wand, erupting on to the page, staining its purity with straggling struggling words. 

And in your mind, a light goes on.

—Anna Lyndsey, Girl in the Dark

Listen (or read) here.

Can you spot the the mistake here?

When I was kid, one of my favorite books was Optricks by Melinda Wentzell and D.K. Holland. It was full of bold, immersive, classic optical illusions, just about all of which you can now find online. Among these was the one that you see in the title of this post—did you spot the the mistake? That's it: "the" appears twice consecutively, but many people don't notice because the repeat word is on either side of a line break. It's also an article, a tiny, auxiliary part of speech that, in print, the brain tends to gloss over more than, say, a flamboyantly flourished adverb.

Be Dazzled

I recently posted a video featuring people with faces painted like the band KISS. The clip hgihlighted three forms of figurative blindness: one mentioned in the song, one perpetrated by the fans, and third as a quasi-hallucination created by the makeup. While one person done up in that signature black-and-white face paint may look iconic (and even ironic), another effect occurs when entire crowds do it together: the individual disappears into the group, and the group participates in a visual effect called disruptive camouflage.

Disruptive camouflage occurs in nature, famously in zebra herds whose converging stripes throw off predators as to their number, individual identity, and direction they're facing. The Brits have taken two important cues from the zebra: the crosswalk (which they call a "zebra crossing') and a practice of painting ships that came about in World War I when they hired painters to decorate both war and commercial vessels with striped patterns. This was also an attempt to throw off predators—in this case German submarines, whose crew had to estimate a ship's distance and course before firing a torpedo at it. This "dazzle camouflage" could fool the enemy into thinking that a ship was turning or moving in a direction that it wasn't, throwing off torpedo calculations by as much as 55°.

A person with a retinal condition might see many things as if they were decorated by a dazzle camoufleur, only the cause of disruption is not tactical, it's the consequence of retinal cells being interrupted. The result is gaps in vision that the brain fills in with made-up stuff, including the whos, whats, how-manys, how-fars and where's-this-goings of people and things of every stripe.

The brilliant podcast 99% Invisible has an episode on dazzle camouflage. Listen to it here.

Vampire Family

A family phenomenon: we with cone dystrophy sit with our backs to the windows. Daylight from outside hurts our eyes, and if we sit across from someone who's backlit, we only see them as a shadow surrounded by a painful white halo of glare. So we always sit with our backs to the window, like Nosferatu covering his face with a cape lest he disintegrate in the rays of the sun.

I once took my dad and aunt, who both share my eye disease, out for Vietnamese food. My kid brother was there and got confused when we all walked around to one side of the table and just stood there, silently wondering how three of us were going to fit into the two chairs that had their backs to the light. As the youngest dystrophyst, I let them take these prime seats and faced the glare. I can deal, and besides, I already know what my dad looks like.

When I meet new people, I'm more discreet—It's like if they find out what I really am, they'll just pull a stake out of their bag and drive plunge it into my heart. Like today, I was meeting a stranger in a café. "I'm in a blue coat by the window," she'd texted, and when I arrived she was, of course, nearly impossible to see, just a glowing ball of light over in the corner. So I got my tea and sat down, trying not to squint, and with it being three degrees outside, she was huddling inside that blue coat of hers. "Hey," I said, "it's cold by this window—Let's go sit over there!" and I took us to another table, nabbing the seat with its back to the light without revealing my actual vampiric nature. Coast clear, stake free.

There's a spectrum of empathy around this photophobia. Strangers and acquaintances don't understand it. Friends and kid brothers need some reminding (but the now-teenage brother is as down with allyship as my cousins have long been at helping my aunts across the street). However, its only we with cone dystrophy who can all stand on the same side of the table and wait, communicating with our Draculean powers of telepathy, until the sun goes down.

Retinal Readings

The reports are in from our retinal photography session! The verdict for my right eye is the presence "fine drusen" (those tiny yellow lipid deposits in the center of the retina) while the left gets "some geographic atrophy." While these diagnoses might seem like cause for a freakout, comparing my pics to online galleries of retinal porn (click at your own risk!) has me feeling in pretty good shape. I already know what my disease is and have a sense of where it's headed.

Oculus Dexter vs. Oculus Sinister—Who will win? 

What's more striking than the photos and what they mean, are the accompanying notes from the ophthalmologist and technician. Because reports like these usually remain in hands jutting out of labcoats, they tend to be about the patient (me) rather than to the patient (me again). While the labcoat-wearers here are all well intentioned and helpful, being passed these notes post-diagnosis makes me feel invisible—like a ghost eavesdropping on his own autopsy.

Also interesting is the technician's recommendation that, "Patient should continue regular follow-up care with their eye care provider." While this is again well-meaning, sound-seeming and gives the eye care industry some business, it's potentially unhelpful to the patient (yep, that's me again). Last time I completed a battery of tests over several visits to Will's Eye Institute, the ophthalmologist just said, "Looks like your rods are starting to dystrophy too," and then sent me on my way. These folks can tell me what's happening, but have never actually offered any support.

This is a big part of why we're doing this project, and why I'm really psyched to have a retinal photographer on board (and it's especially fab that she is also an artist and friend). The way we patients are treated (in both senses of the word) needs to change. Part of our research with this blog and the theatre piece that we're creating is to spark conversations around what that change could look like. How can eye care specialists go from being well-meaning to well- Add your thoughts in the comments below.

What Color Are My Clothes?

I like wearing bright colors. Probably because I have an easier time telling them apart. Today I bought a hoodie and I have no idea what color it is. Here's a close up. Clue me into the color in the comments below.

Face Blind Sometimes

Self portrait by face blind artist Chuck Close.

There was this person that I used to see around. But more often, she saw me.

When we'd meet, she knew who I was, but I didn't recognize her, and I saw her take offense, like I didn't find her memorable or important. But really I just couldn't see her that well and needed some clueing in as to who she was.

Someone had told her that I had prosopagnosia, better known as face blindness, a neurological condition where people cannot differentiate people's faces. True that many people with low vision cannot distinguish faces, but this is not prosopagnosia. What I have begins in the eye as an optical distortion, whereas neurological face blindness is a function of the brain, not optics. Even close friends, family members and loved ones can be indistinguishable to people with prosopagnosia, but I do recognize those familiar to me and can tell them apart, including my friends who are identical twins. It's people who I don't know so well that I get confused, and that optical conundrum does indeed become a cerebral muddle.

Despite the difference in diagnosis, prosopagnosia and low vision also share some characteristics, particularly on the social level. People can hide from those of us who have either condition and often wonder who it is we're talking to. The face blind fellow in this Radiolab segment from their show on "Falling" likens his experience to having someone "disappear into the crowd":

Here's a more extensive conversation about prosopagnosia with neuroscientist Oliver Sachs and portrait artist Chuck Close. Close's artistic method of breaking up images into pixelated squares is not unlike how I put together faces when I look at them. I can also relate to what both men say about social strategies around not recognizing people:

Funny how at the end of this segment, Sachs and Close reveal that they share another characteristic: they both see through only one eye, though Sachs has lost his vision in that eye, and Close shuts one eye to prevent himself from seeing double. More about when and why I see through one eye in a future post.

Snow Days Are Painful Days

My head is throbbing. And it hurts to look at anything. Even with my eyes closed.

"Snow blindness" is a well known condition that's a specific form of photokeratitis, a painful reaction to ultraviolet light. In the case of snow blindness, snow and ice reflect UV rays from the sun and the cornea responds by becoming inflamed.

The distinction between photophobia (light sensitivity) and photokeratitus is an important one in that it explains why sunny days and incandescent lights are okay for me, but overcast days and fluorescent lights are intolerable. And photophobia goes away as soon as the lights are out, but photokeratitis persists because the inflammation if pulling on muscles all over my face and head.

Still, I love the snow, even when it gives me a migraine.

Atomic Visions

The pixelated banner at the top of this blog shows
how I might see an image made up of smooth lines.

As a kid I was obsessed with atoms. I marveled at how small they were, and how they made up everything in the universe. Also, I hypothesized that I could actually see them with my naked eyes because when I look around, everything I see is made up of tiny, shimmering dots, kind of like the static on an old TV set that congeals into pictures when tuned to the right signal.

Even as a kid I knew that my hypothesis was really just a fantasy. My pixelated vision is likely me seeing my retinas give out, cell by cell. While it's kind of cool to have this dot-matrix view of the world, that constant background shimmer makes me a little less sure of what I'm seeing as my cones gradually give out. But every once in a while, it's fun to pretend that I have superpowers.