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!

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.

"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.

Seeing Song #1: That's Nash, Not Cash

In 2004 I went on a retreat co-led by Marc Grossman, a functional optometrist who also practices Chinese medicine. Everyone at the retreat had some sort of visual condition (mostly presbyopia) that they wanted to alleviate, and my own cone dystrophy was perhaps the most severe condition in the room, even though I was the youngest person there. I was also the only male, aside from the facilitators.

Over the course of the week we did eye exercises, some meditating and journaling, and practiced a daily yoga sequence designed to stimulate meridians associated with vision. At week's end everyone was eager to receive Dr. Grossman's herbal and dietary prescriptions tailored to our specific eye troubles. But the moment that brought the greatest elation was when he put on a CD and this song played:


I love Johnny Nash's original version because it gradually introduces dissonant elements that build tension in an otherwise "everything-is-just-hunky-dory" type song: An out-of-tune accordion kicks in on the second verse, a Moog synthesizer takes over the bridge, and lyrics about blue skies shift into foreboding minor keys because we know that life's not really gonna be all bright and sunshiny every day, right? But we can hope, just like a roomful of middle-aged ladies who smile and dance along at a yoga studio in the Berkshires, ready to drive back to Long Island, to their homes and their husbands, maybe to try on their miracle cures.

PS: I absolutely recommend taking a workshop with Marc, and I have lots to say about functional optometry, acupuncture, herbal medicine and yoga as methods for improving vision. If you're curious, leave me a comment below.

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.

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.

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.

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.

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.