More Than a Conch-Fondler

Today a programme on BBC Radio 4 made brief mention of a scientist named Rumphius whom they referred to as, "the blind shell collector." I'd never heard of him, so I looked him up. Here's what Wikipedia currently offers:

Georg Eberhard Rumphius (originally: Rumpf; baptized c. November 1, 1627–June 15, 1702) was a German-born botanist employed by the Dutch East India Company in what is now eastern Indonesia, and is best known for his work Herbarium Amboinense produced in the face of severe personal tragedies, including the death of his wife and a daughter in an earthquake, going blind from glaucoma, loss of his library and manuscripts in major fire, and losing early copies of his book when the ship carrying it was sunk. In addition to his major contributions to plant systematics, he is also remembered for his skills as an ethnographer and his frequent defense of Ambonese peoples against colonialism.

That's a lot more than the Beeb's brief mention that conjured visions of an old man with sunken eyes fondling a conch.

I wonder about the chronology of Rumphius's life, when his blindness came on, and how he correlated his own personal struggles and tragedies of the with those of the islanders being colonized by the Dutch. I also wonder this stuff about myself and members of my family who are visually impaired and have fought for social justice.

"31 Eyes"

I have a confession to make: This is not the first blog I've made about vision. It is the second.

In 2010 I wrote a month-long blog called 31 Eyes (one for each of day of the month) that featured daily tips toward improving one's vision. See it here.

I based a lot of 31 Eyes' material on the work of natural vision therapists like William H. Bates and Meir Schneider. Today in rehearsal we looked at one of Schneider's "Yoga for the Eyes" videos. This one:


It's amazing to revisit this work and to remember how helpful it was in bringing relaxation to my eyes as well as improvements to my vision. 5 years after making 31 Eyes and 18 years after adopting Schneider's methods, I say watch this video, have a look at the blog, and try these exercises. We might also be doing some together during the show.

What I See in the Dark

Today we went with our retinal photographer to take turns floating in a sensory isolation tank.

I've been looking forward to this for years and am so psyched to have made friends with some folks who have one in their house. When it was my turn, I showered and then opened the closet door in the bathroom that reveals the hatch to the tank, looking like a cross between the Apollo Space Capsule they had the science museum when I was a kid and the doorway to Narnia. Inside is like a roomy, waterlogged coffin: tall enough to sit up in and long/wide enough to lie down in without touching any sides. The air and water are heated to body temp with enough salinity to support a supine person.

As I shut the hatch, lay down and turned out the light, my first concern was not touching sides. Then I realized I was holding my head up, so I let it go, further and further back, much further than I thought I could go until my trapezius could really relax. As I began to lose sensory perception of the difference between the air above and saltwater below, internal sensations crept in: the rhythm of breath and heartbeat, an itch on my face, my belly, in my ear, and most prominently, all the light I see all the time in my eyes.

The tank is totally dark, so dark it doesn't matter if eyes are open or closed. But for me it looks like the Milky Way: a haze of shimmering stars everywhere I look. It's so bright that at first I wondered if I'd left the light on, but those lights are always there, even in the background when my eyes are open. This is my biggest impediment to seeing, even more than myopia or astigmatism.

This first float was a project of noticing: What do I see when there's nothing to see? A future float might be the project of seeing no stars, only dark.

Tetrachromatics 101: A Rainbow of Misinformation

Capitalizing on the web's weird dress fetish the other day, an inaccurate Linkedin article about tetrachromacy (having 4 types of retinal cone cells instead of the usual 3) wormed its way off the internet and into 3 million people's heads. The article offered a bar of 39 web-safe colors (pictured above) and told readers that the number of colors they saw indicated the makeup of their cone cells. This article was so misleading, I refrain from even linking to it, but I will point you to this video that gives a fun 5-minute crash-course in cone science. I've also posted some reputable sources at the bottom of this post.

How (aside from spelling and grammatical errors) was said Linkedin article inaccurate? Let me count the ways:

1. The title statement, "25% of the people [sic] have a 4th cone"is false. Only the half of us with two X chromosomes (primarily women) are eligible to have four types of cone cells (RGB+1), and of these a possible 12% are tetrachromats, meaning that only 6% of "the people" (half of 12%) can have a 4th cone. Of these 6%, very few are functioning tetrachromats: that "+1" cone is akin to the low-functioning mutant cone in X-linked colorblindness (see #3 below).
2. An online rainbow will NOT tell you if you have a 4th cone. Because color monitors are trichromatic (RGB) like the cones in our eyes, they do not produce colors that trichromats cannot see.
3. The statement, "You are dichromats, like dogs," is not true for all people who have trouble differentiating color. In common X-linked color blindness, a third cone is present instead of the red or green cone, it's just low-functioning. Many color-impaired people have other retinal disorders, such as cone dystrophy or macular degeneration, which can limit perception of color. They are not dichromts.
4. Saying that colorblind people, "are likely to wear black, beige and blue," is baloney. Colorblind people often ask color-seeing friends to help them pick out and label clothes and advise them as to what matches with what. Or they just go through life wearing whatever.
5. Also false: "25% of the population is dichromat" and, "50% of the population is trichromat." Almost everyone (at least 94%) is trichromatic.
6. Saying that tetrachromats are "irritated by yellow" and therefore own no yellow clothes is a sham Just as with the "black, beige and blue" statement from #4, the author is picking colors that tend to be popular or unpopular and misleading readers into thinking that they are retinal mutants.
7. Finally, who in the world puts a winky-face with its tongue hanging out in the title of their article and expects it to be taken seriously? 'Nuff said.

Further reading:

• Good popular science article on the subject: Greenwood, Veronique. "The Humans with the Super Human Vision." Discover. August, 2012.
• A little more academic: Katta, Samata. "Ask a Neuroscientist: Human Tetrachromacy." Neuroblog. Stanford University. December, 2013.
• Again, this short video from Blue Man Group gives a quick introduction to how rods and cones work.
• And this podcast piece about tetrachromacy is as excellent as it is entertaining:

Blue Way

We had some nice breakthroughs in rehearsal today. And then we realized that Blue Man Group did it all first:

What Color Are My Clothes? Part 3

Apparently I'm in good company when it comes to not knowing the color of some cloth. Nearly 30 million people are in on the debate about this dress. If you haven't seen it yet, look at the photo and answer the question, "What color is this dress?" before reading any further.

The dress has sparked a Pantone civil war that's spilled off of the internet and into people's private lives. One camp declares it to be blue and black, another decreees white and gold. I myself saw blue and grey, but then the suggestion that the grey was black makes me see it as black.

I'm not interested in the gossip, how this dress broke the internet or destroyed relationships, or even what Taylor Swift has to say about it (what is she a mantis shrimp or something?) What truly interests me is the science behind the dispute. 

Somewhere in the murky depths of BuzzFeed is an explanation for the debate stating that, "it’s not monitor settings" because two people can see it on the same screen and perceive different things. BuzzFeed also says, "It’s probably not about the cells in your eyes," (unless you have a retinal condition like me, in which case retinal cells might be a factor), and then goes on to explain how our brains are always deciding what they're seeing.

“In the case of the dress, some people are deciding that there is a fair amount of illumination on a blue and black (or less reflective) dress," says Cedar Riener, a professor of psychology at Randolph-Macon College. "Other people are deciding that it is less illumination on a white/gold dress (it is in shadow, but more reflective).”

These differences in perception are based on individual experiences and "top-down" processing in the brain. Cognitive neuroscientist John Borghi of Rockefeller University explains, “It could also be that you’ve seen dresses (or fabric) with the same texture or shape before, which could also affect your perception.”

Here's what Adobe has to say about the dress,
though when I did this on a photo of my
sweatshirt, the results were inaccurate.

Aside from all of us having wasted tens of millions of person-hours on what's really just a shoddy photo of a nice dress, I'm glad people are talking about this because top-down cognitive processing has bigger societal implications than mere disagreements about colors of clothes. I touched on this in earlier posts about cultural astigmatism, race, and posted a clip that postulates that people can look right at something and not see it. In each of these posts I discussed how our prior experiences and cultural preferences have us constantly deciding what we each see when we look at the same subject.

Today online, that debate is about the color of a dress. Another day in the street it may be about the color of someone's skin and what that means to me or you or someone who holds power over that hypothetical person. Our experiences compose our vision, our vision comprises our perception, and our perceptions influence our actions. Look forward to more dialogue on this soon.

Believing is Seeing: Blind Film #7

The film's title asks, What the Bleep Do We Know? One thing I know is that the phrase, "A wonderful story that I believe is true," might not be the strongest line to open a scientific statement. Many scholars and scientists have dismissed this movie as such tosh peddled by charlatans, but in light of mirages and other illusions that we experience on the sea, why not this phenomenon? Provide your anwers in the comments. I'll give mine in a future post.

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.

A Clockwork ERG Simulation: Blind Film #6

Sometimes blindness takes the form of someone being forced to see something one doesn't want to see—something painful…physically, emotionally, or both.

An electroretinograph (onomatopoeically abbreviated "ERG") is a test that measures the electrical responses of  cells in the retina—rods, cones, ganglions, and so on. When they administer it, they dose the patient with some very strong eyedrops that can dilate the pupils (and severely blur the vision) for up to three days. Then they pry the eyes open and insert an oversized contact lens attached to an electrode, along with several other electrodes that get taped to the face and scalp…that's the easy part. Next they subject the patient to three barrages of flashing lights: one minute of metronomic blue flashes (painful), one minute of metronomic red flashes (worse), and then 10 minutes of stroboscopic white light (unquantifiably bad), after which they remove the electrodes and the lens and repeat the whole thing with the other eye.

I've had the ERG three times in my life with varying results. In my teenage years between session #1 and #2, I saw Stanley Kubrick's film A Clockwork Orange, about a gang of longjohn-wearing protopunk hooligans on a spree of what they termed "ultraviolence." To cure one of them of his psychopathic behavior, they strap him into a cinema seat, pry open his eyelids, and force him to watch footage of Nazi warcrimes while an orderly administers drops of fluid into his eyes, an experience that, from where I sat, was astonishingly like the ERG.

Sometimes blindness takes the form of someone being forced to see something one doesn't want to see—something painful…physically, emotionally, or both. That pain can be illuminating, and it can also be blinding. The line between the two is a fine one indeed.

Blind Song #9: That's Doctor Sakamoto to you

The big hit when I asked friends for a list of songs that mention blindness:



 Ironies:

1. The hospital in the video is full of doctors, but nary an ophthalmologist.
2. The silent film era intertitles are more suited to the hearing impaired.
3. "A suitable case for treatment" refers to the film that I'm named after.

Thanks mom.

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.

Owls?

Owls.

Sonar in Stereo

"When a sighted child gets hurt, we consider it to be unfortunate.

When a blind child gets hurt, we consider it to be tragic."

Before you read any further, put on your headphones and listen to this radio story from 2011. That was when I first learned of Daniel Kish.

Kish, who is blind, uses echolocation to create a mental image of his surroundings in the same way that bats or dolphins use their own sonar to navigate through their various dark corners of the world. This interview is truly amazing, not just because it highlights Kish's ability to ride a bike, but also because Guy Raz recorded the whole thing with a binaural microphone, meaning that when I listen to it on headphones, the surround sound effect makes it so that I can actually sense what Kish senses when he echolocates. I literally get the picture.

"So when I walk into a new area, the first thing I do is I take stock of the most prominent features. So in this particular area, the most prominent features would be that building, the umbrella in the middle of this table, and the tree behind me, and the canopy that covers this area. Now, further away to our left is another building that's slightly further away. And this building has a much more defined reflection than this building, which suggests that, a) the building must be at some sort of angle relative to us. and, b) that it must have more texture to it—pillars, alcoves, I don't know, maybe balcony structures."

Listen to that on headphones and you'll see what he's saying.

Kish got much greater exposure when Invisibilia and This American Life co-broadcast this hour-long story about him in early 2015. While it's clear that NPR loves him, a lot of traditionalists in the blind community are a bit freaked out by what he does and his advocacy that other blind folks follow his path. It brings to mind the hatred from the American Optometrical Association toward Dr. William H. Bates for his 1920 book that recommended people improve their vision without using glasses. What Bates was to those of us with low vision, Kish is to folks with no vision. In Kish's words:

"We have supporters, and we have opponents. Any time you have an established convention, the one who comes along and says that it can be done differently, it can be done better, it can be done faster, that person is seen as the renegade. And we are, I think, seen as renegades in many instances. We really want to bring the power of action back into the hands of the consumer, of blind individuals and of their families."

Links:

• Guy Raz's 9-minute piece on Daniel Kish for Morning Edition
• Alix Spiegel and Lulu Miller's hour-long piece from Inviibilia/This American Life

More about Kish, Bates, rods, cones and the authors of these posts soon to come.

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.

Retinas Enlarged

Here's a picture from Monday's photo shoot:

Curious to know what makes this retina different from others.

Retinas Exposed

Today we met with our retinal photographer. In a café.

I love taking the clinical experience out of the clinic. Having someone pointing a gun up to our eyes while everyone around us is drinking coffee and tea and playing chess makes the eye exam a more pedestrian affair—a "Café Clinique," like street theatre, subway musicians or a circus in the park, we blur the lines between what is and isn't performance, and also what is and isn't clinical.

No Read, No Reed

In 4th grade I took up clarinet, but gave it up three years later when I got braces. Too much metal in my mouth.

In my early 20s I found a saxophone at a yard sale. They were offering free lessons at a school in Chicago for anyone who passed a music reading test. But by then my vision was failing and I couldn't read sheet music, so I failed the test.

Now I can make noises on a single-reed instrument, but jumping in a band and following along with the sheet music is out of the question, and Rasaan Roland Kirk I am not.