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The Stand: NYC Dance Marathon meets Space Clamps

Two of my favorite things, dance and music, are about to collide.

I had the good fortune of taking part in the University of Iowa Dance Marathon from 2004 to 2009, a time I cherish for all your usual reasons: great cause, great people, great dance party. When I moved to New York from Iowa a few years ago, I left a realm of volunteerism at children’s hospitals to enter a world of howling shenanigans.

Fortunately, great people such as Colette Forcier exist. Colette and I were Morale Captains in Dance Marathon at Iowa back in the aughts. Colette would later become Executive Director of the UIDM. Fast-forward, she lands a job last year in New Jersey as basically a Dance Marathon fo’ life pro at schools all over the place, makin’ it rain for people whose lives run quite dry. And now she’s the Recruitment Director of the first ever Dance Marathon in NYC: The Stand. Because of her role, I’m now on the Morale Committee of the aforementioned first ever Dance Marathon in NYC: The Stand. You should click on that link and see what it’s all about.

Now, with tomfoolery abound and causes for glee in trumps, I am pleased to announce Space Clamps will be performing this coming Saturday, April 6th, at the first ever Dance Marathon in NYC: The Stand.

Join The Stand, join Space Clamps, join me, join the lot of us that are making this thing happen. And if you can’t make it to the event itself, feel free to contribute as we dance our way on, up, always.

Qualia Fest 2012, in review

As previewed by Ariel Kaminer of the New York Times, the 3rd Annual Qualia Fest this year was full of nerd rock, philosophical beat poetry, and tons of this guy. That’s right, none of those links are actually of any acts from this year, which means stay tuned to the webs, good people, and let’s hope everyone’s brains weren’t blown out by Chalmers so much that no one caught anything on their cameras.

In the meanwhile, you should “Like” Space Clamps on thefacebook and check out the music of our good friends, experimental 8-bit rockers Quiet Karate Reflex and the original neuroband, the Amygdaloids.

Dialoge mit Pascal Wallisch II

[Author’s Note: The first Dialoge mit Pascal Wallisch was several months ago, where Pascal joined the first-year graduate student office at CNS for an afternoon and talked about whatever was on his mind. This Dialoge was arranged for the Advanced Science Communication Workshop with Stephen Hall at NYU, where the prompt was to write a character sketch on a scientist]

“I remember being three or four or five and telling my father that I wanted to be a magician,” begins Pascal Wallisch. “He told me that there is no magic so I said fine, I’m going to be a scientist.” Since then, he has deviated little from his primary ambition. In high school, he briefly considered politics or a career in the military. Says Wallisch, “I was always fascinated with strategy. But conquest today is not like it was a thousand years ago. If you were the Romans, you could kill everybody and it’s yours. But today if you take something and win you still have to give it back.”

We sit in my office only a flight of stairs below his laboratory. The constant hum of problem solving and foot traffic of my eleven officemates fills the crammed space. Pascal’s presence in the room does not go unnoticed. A known character in the department, his nearly six feet of stature seems to unfold when he sits. He sports a buttoned-to-the-top dress shirt. Under a thick set of dark hair and glasses, his deep set eyes and teeth are wide as he speaks.

“In high school, in Germany, we had majors,” he says, adding that he chose math and physics. Not until he visited with a professor of physics did he have an importance realization. “The professor could not vocalize his thoughts or ideas. His laboratory was a cave. His post-doc looked like he literally had not seen sunlight in months. And advancements anymore require billions of dollars, just look at CERN. Some science works out details and some science is about advancing the field. I wanted to advance.”

He spent his year after high school in the national service taking care of mentally handicapped individuals. During this time he travelled extensively, including to India. While in a Calcutta hostel, an 18 year old Wallisch had a vision. He saw that he needed to not only move to Berlin – a city of much greater magnitude than his hometown of Neufra, population 2000 – but that he would study psychology at university, a shock to everyone he knew. Growing up in a town with only sheep and mountains, as he describes, Wallisch had never met anyone who attended college. “My grandfather worked a factory and my father was a carpenter. The whole idea was not to go to college.”

In the spring of 1998, Wallisch would enroll at Free Univerisity, in Berlin. His time there was a whirlwind: Wallisch completed 80 courses in a two year span while living on a liquid-only diet. “Some of the people I cared for during my national service year lived on liquids. I calculated that I could save huge sums of time if I did the same.” So he drank three or four 500 calorie shakes between classes every day. “It was crazy. I actually decided to go on a fucking liquid-only diet. What was I thinking?”

Besides his coursework, he worked in labs studying sleep, social psychology and cognition. Through his research though, he realized that he had just scratched the surface. “Trying to infer [brain] mechanisms from psychophysics is impossible. I needed something more.”

Late in college while working at the Max Planck Institute, Wallisch met Gerd Gigerenzer, an acclaimed professor of psychology. “I was surprised that he gave me the time of day. I was a peasant in the labs. But I told him how I felt. That I was not pleased with what I knew.” Gigerenzer told the young Wallisch that if he was truly serious he needed to do two things: he had to get an education in neuroscience, and in the US. Moreover, he told the impressionable Wallisch that there was only one real university in the world: the University of Chicago, where Gigerenzer was formerly faculty. Wallisch would soon gear up for another major life change.

Wallisch flips through a photo album on Facebook of his early years. The young Pascal has the same thick dark hair and glasses. A scene of his backyard looks like a page from the Polar Express: train tracks divide pastures from snowy mountains. Other shots are of barren lands.

An abundant mash of eccentricity, obscurity, and charm, Wallisch beams of thoughtfully opinionated gratuity [1]. He sits in the front at guest lectures [2], not hesitating to interrupt the talk to inquire about details. But he speaks not just to hear his own voice, as happens so often in academics. Rather, he wants to understand.

“I was a fucking highlander from the fucking mountains.” Looking at images of a toddler Pascal playing with dominoes and bringing in the harvest, he speaks without nostalgia, as if reading ingredients on a label.

“I was back just recently,” says Pascal, “growing up there I was in the cave and only saw the shadow. You know the cave?” I nod. “I only knew I was in the cave once I left.”

Before applying to the graduate school, Wallisch received an offer to work as a research technician in the lab of Steve Kosslyn at Harvard. Wallisch had suspected that he was in another cave, having already escaped his small hometown to live in Berlin. Given the opportunity to join Kosslyn’s lab at Harvard, Pascal’s outlook was clear cut and simple:

“My country sucks. I’m going to the US.”

Back on a solid food diet, he moved to Cambridge to study the relatively new technology of functional magnetic resonance imaging, or fMRI. The field was emerging, but its potential for studying brain mechanisms was still unclear to many, including Wallisch. Unsatisfied with the research, he followed Gigerenzer’s advice and moved to Chicago in the fall of 2001. Little would be the same.

After moving to Chicago, Wallisch met JR Banks [3], a high-energy, distinguished young neuroscientist. Banks had recently published a series of high profile research papers at a time when funding and the spotlight on live brain recordings was rapidly climbing. Pascal soon joined his lab. In his first two years in Chicago, research was productive and Wallisch enjoyed the high-gear approach led by his mentor, Banks. But by 2003, Wallisch began to notice that the mood in the lab was dark. A product of the classic narrow academic track, the Banks Lab prized slaving over work day and night. Research began consuming the life of Wallisch, too, so he sought outside activity. He fell in love with teaching, an interest that would keep Wallisch balanced when the Banks Lab began to show signs of wear.

“In 2004 I received my Masters degree and had the opportunity to leave the lab. My wife begged me to. I saw before my eyes that the lab was self-destructive. That it could not be sustained.” But a strange sense of loyalty kept Wallisch in the lab to pursue his doctorate.

Wallisch would teach a total of 14 classes while at Chicago. At the end of his graduate work, he won a competitive university-wide teaching award, going against students from many highly regarded departments, including economics and social sciences. He would later compile his teaching material and publish a book, MATLAB for Neuroscientists. These outside interests and accomplishments helped Wallisch stay afloat while the lab sank.

Wallisch received his PhD in August of 2007. A month after completing his work, the Banks Lab shutdown. “I finished at the right time,” says Wallisch. Doctorate in hand, he accepted an offer to begin post-doctoral work at NYU, where he began work a week after leaving Chicago.

“I don’t drink, I don’t smoke, go out. It can be hard to socialize. I don’t read fiction.” I get mildly upset when I learn this last part. He is quick to cite several papers on the negative effects of reading fiction. When asked if he might be missing out on some external inspiration, he sits up and smiles.

“I’ve always had a lot of ideas. I’ve had nine ideas that I’ve written down today,” he says, adding that he doesn’t need any more ideas. “It’s hard to execute one in a year.”

A voice from the other side of the office announces technical difficulties and insults MATLAB.

“There’s nothing wrong with MATLAB,” says Wallisch. He pauses and reflects on his words:

“That’s not true.”

In the spring of 2003, Wallisch enrolled in a course in Human Memory. Each class, he sat next to a cute brunette by the name of Kira, an undergraduate from New Jersey. With only a week left in class, Wallisch spoke to her for the first time, borrowing a pencil from her. He returned it the following week on the last day of class.

“I think that impressed her, that I remembered the pencil,” says Wallisch, seemingly baffled at the situation. Talk moved to what courses they were taking in the fall, and they discovered that Kira was signed up for a class that Pascal would teach.

On ethical grounds, Kira thought that she should withdraw from the course since she had conversed with Pascal. Parting ways, Pascal was displeased with the turnout of their interaction. He approached the professor and asked him for Kira’s email, explaining that he would try to convince her to still take the class in the fall with another teacher. The professor obliged. Pascal sent Kira a note asking her to stay in the course. At the end of the message, Pascal invited Kira to join him at his house that night for a get-together with his fellow graduate students.

“She came over and it was a bit awkward, this young undergraduate with me and all my classmates, some of whom were her TAs.” Nonetheless, Pascal walked Kira back to her dorm that night. They would see each other every day for the next five days before she boarded a plane to volunteer for a month helping orphans in New York.

The young Kira was to stay in New York all summer, to take an LSAT class. Wallsich convinced her that she should take the same class in Chicago after finishing the volunteer work. Not having a place to live, she moved in with Pascal. “It was crazy. Her parents were from a Jewish settlement, and their daughter wanted to move in with some older German guy she had just met. It’s really fucked up if you think about it. I mean, who does that?” A practicing attorney at age 23, she wasn’t about to just move in with anyone. “Kira is a no-bullshit person. But she moved in with me. Fortunately, she never left.”

By the time he arrived in New York, Wallisch was 100% focused on a career in academics. He wanted to “do the faculty thing.” He would attend a competitive-entry high level course at Cold Spring Harbor Laboratories, whose attendance is often indicative of careers in academics. While in the course, Wallisch noticed that many attendees were children of academics. “My life was very unintellectual until the age of 20. I didn’t grow up with professors as parents, so I had a lot of catching up to do. While so many of the other students were incredibly smart, so many of them lacked in so many other ways. No balance in life. No sense of self. And they all go on to careers in academics. Call me arrogant, but I see this now in faculty. Their personal well-being is so atrophied.”

Wallisch soon saw that he was heading in the wrong direction. It took a visit to a doctor’s office for him see that his single track mentality, the track that was the root of his former adviser’s collapse, was plaguing him. His “notion of becoming,” was the wrong approach, and his health gave all the signs.

Wallisch gained sixty pounds without realizing it. “Every number on my blood test was alarming.” Having neglected everything about his personal self, his body was paying dearly. Wallisch soon made drastic changes to his life, starting with data collection: he wears a device that records brain signals when he sleeps and a pedometer to track every step he takes. He meticulously documents every calorie and vitamin that he consumes and burns, all the while collecting subjective data on mood and feelings.

“I used to think that caring about nutrition and metabolism was all hippie bullshit, but everything was fucked. I had to make changes. People burn out physically, or mentally, or both. I didn’t have any energy, looking back.”

“I level up every five years,” says Wallisch, adding that since 2008 his focus has been on personal development. “In 2013, it will be all about faculty.” His highly structured sense of development might seem odd, but his intensity is bleaching, as if a five year life-classification design were the most normal approach a human could ever have to life. “From ‘03 to ‘08 it was all neuroscience. Ninety eight to ‘03, psychology.”’ He pauses briefly between each interval. “Ninety three to ninety eight, philosophy.” Before that? “Video games.”

“I played Doom, Starcraft, Civilization. It was all about strategy. I was incredibly competitive. I wouldn’t sleep at night if I didn’t win.”

Wallisch is open about his admiration of Theodore Roosevelt. “He was outright about life being strenuous. For him, the point of life was to not have it easy. Life is hard for everyone.” He sits back in his chair now, opining freely. I stopped asking questions a while ago, telling him to just keep the faucet on.

“Life is about challenges. You must strive for excellence and at the same time have virtues. I’m proud to say that at this point in life no one can look me in the eyes and honestly say ‘you mother fucker, you screwed me over.’ We need more of this in society.” His glasses come off at this point for what seems to be cleaning or emphasis.

“The problem with capitalism is that it doesn’t promote values,” his hands now directing his message. “You don’t need morals to make a lot of money. So where do we get our values? Religion is dead. Everyone needs a code of personal conduct. Do the right thing. Don’t screw people over.”

His tone balances authority with humility, hubris with gratuity. “A lot of people publish and get their names on papers because they can get away with it. They have done nothing for the paper, but they put their name on it. Professionally this is bad. This is not right. I can honestly say that I’m proud of everything that I published. I don’t have many publications,” he adds with sincerity.

“Maybe it will take longer this way. But I am OK with it. People cut corners and get away with it,” he says, going on to reference Marc Hauser, the psychologist whose accusations of dishonesty forced him out of academia [4].

My first encounter with Pascal flashes back: winter 2010, interviewing in New York. He handed out business cards for his book to interviewees, shamelessly promoting his work. The topic of conversation was important factors in choosing a graduate school. He dove into a tirade on rigid honesty. What you do will always come back around. Cutting corners will bite you. Cheating will kill you. Honesty was everything. Honesty in your life’s work. Honesty to others. Honesty to yourself.

“The people that do this, that go hard core into academics: these people are really fucked up,” says Wallisch. “I am who I am. Nothing was given to me. I had to fight.” I question his path. His respond is quick.

“My natural habitat is the academy.”

I inquire as to the last time he did something unethical. He pauses.

“I was in kindergarten,” says Wallisch. “I vividly recall stealing toys from the classroom.
To this day, this is a great source of anguish to me.”

“I take ownership of my actions. Call it a very old-fashioned code of conduct. People cheat in high school or on their spouses. You’ll always find a way to rationalize it, so you have to have a strong set of morals.” Wallisch sits up high, shaking his head so slightly back and forth with each big point he makes. “You have to say No. These ideas aren’t common and that makes me sad.”

He expresses his disappointment that the first hit to come up when you google his book
is a bit-torrent download. “It’s not about the money for me, it is a matter of respect.”
Wallisch has had many people contact him asking him for a PDF of the book (whose
dissemination would be illegal, he notes). Students from Iran, Pakistan, Ivory Coast, and other countries, contact him. They cannot afford the book and ask for copies.

When the publisher rejected Wallisch’s request[5] that they send books to developing countries, he saw an opportunity for charity. He buys the book and mails it to them. “Sure, I could email a PDF. But the world is your personal standards.”

At the end of our conversation Pascal somehow still seems to be gaining momentum. His words hang in the air like smoke in a basement bar around the office dwellers. Occasionally, a message sticks to whatever might reach out as it drifts by. Walking out of the door, he reflects.

“I’m not perfect about any of this. This is just what I think about.”

———

[1] His email tagline reads:

    Note: Please be advised that in order to preserve productivity, I
    intend to check emails maximally once per day (Jackson, Dawson &
    Wilson, 2001), unless forced by circumstance. In case of emergency,
    please use other means of contact. Thank you for your understanding
    and patience.

    References:
    Jackson, T, Dawson, T, & Wilson, D (2001). The cost of email
    interruption. Journal of Systems and Information Technology, 5, 81-92.

[2] Little will he wait to correct mislabeled equations or errant axes: you can’t argue that clarity isn’t key.
[3] Name changed.
[4] http://en.wikipedia.org/wiki/Marc_Hauser
[5] But of course, they’re going to reject any request.

Modern Diseases of the Will: Developmental Diseases of the Graduate Student

Author’s note: This piece was prepared for a science writing workshop with Stephen Hall in October, 2011. The prompt was to read the chapter from Cajal’s “Advice for a Young Investigator” on Diseases of the Will, and invent our own modern diseases of the will.

At a Friday happy hour on the Lower East Side, Jack, in his fifth year of graduate studies, buys a round of drinks for his colleagues in celebration of his first and freshly minted publication in the highly reputable journal, Proceedings of the National Academy of Sciences. The conversation at the scene follows.

“Jack, you might as well just start applying for faculty positions,” says first year graduate student Lois Graff, a bright shooter from the University of Texas, not at all ironically.

“You can probably get some good government funding for that cancer project now,” says classmate Yoshi, a fifth year graduate student at CUNY, in all seriousness.

“You won’t have a problem getting a good post-doc,” says terminal post-doc Alan, whose age and nationality span the baffling range of late 20s and German to 40s and Caribbean, depending.

Jack, graduate of Tufts and now spangled student of molecular biology at the CUNY Medical Center, grins and winks, saying “I’ll save the big cancer project for when I have tenure.” Lois gleams in admiration, Yoshi is terribly jealous, and Alan1 visibly vomits everywhere.

What just happened?

Lois, a just-got-the-plastic-off-of-her, naive graduate student, idolizes the academy. She sees the success of a colleague not much older and dreams of following the path that he has projected: one of certain success. The statistics hold that only one in ten first-year graduate students goes on to achieve a tenured faculty position. Lois has heard this before, but the message does not register. She envisions decorations on future walls. She refuses to accept all evidence that the odds are heavily against her. Sure, she might be the one out of the ten that succeeds. But nine out of ten times, Lois, our aspiring young graduate student, suffers from a developmental disease of the will: denial.

Yoshi, a hard-working but less fortunate classmate of Jack’s, envies his colleague. He has worked harder than Jack at every stage and put in countless more hours, but loses hope when his work fails to gain such recognition. Yoshi might be the most successful of the bunch if he had semblances of foresight and reality. That Jack’s finding was both novel and vogue requires a non-negligible amount of luck. Yet Yoshi fails to realize that Jack’s cerebral balloon from interim success to certain grandeur is set to burst. Yoshi suffers from the same disease as every other losing kid on the sixth grade track team who simply lacks perspective and cannot predict his victor’s early-career (we’re talking high school) bad knee and perhaps later-in-life indulgent obesity and — while we’re at it — cardiac, that if only Yoshi knew this turn of fate would he never have cried on the track after placing a lousy second to the kid who seriously had to be in like seventh or even eighth grade: jealousy.

Without much context we have to hope that any real Jack was just kidding. But our Jack unfortunately pronounced himself the champion of a marathon for which he has only begun training. His pretension is superseded only by his presumptuousness. Maybe Jack never got the motivational proverbs on hard work and humility. Maybe he did, but long ago dismissed the platitudes. As the necessity of accepting trite (or any) advice in order to succeed can only be seen in retrospect, we know only where Jack goes wrong if he does. We cannot dismiss Jack’s immediate success altogether, for he may make a great hot head in his field. Nevertheless, Jack has disease akin to Alzheimer’s2, where the best diagnosis can only be made post-mortem: overconfidence.

1 I’ll be outright: Alan doesn’t appear again in this story. It’s not for any personal or forgotten reasons, but more that his developmental disease seems extraclassical with regards to the diseases of the graduate students at hand, and, in order to treat properly, seems like it deserves not just a whole bout of comparisons to other diseases at his stage and such but at least another round of cocktails if he has to put up with Jack’s shit.

2 Physicians typically diagnose people who exhibit signs of Alzheimer’s with dementia. Dementia is easily characterized at the behavioral level, as I’m sure is imaginable. But people with all kinds of dementia are often incorrectly stamped with Alzheimer’s, which itself is actually a much more specific disease than dementia, and can only be diagnosed after a bunch of invasive tests that can only be done on cadavers.

Stars and the Sky

Winter was a world of darkness.  Arriving before sunrise, six out of seven days were in the lab, in the dark room.  In vision experiments, I had to control every photon that was meant to be seen, meaning stray light was prohibited from leaking into the room with lots of felt and duct tape.

My eyes adapted in about ten minutes, having tested myself several times as a control subject in the clinic.  I had always thought that my night vision was bad.  Catching a football was terrifying in the absence of a high sun.  A few dropped catches is all it takes to plant incapability in the mind and repulsion at partaking in something.  Anything.  A delusion of injury. Illness.

Like getting fouled hard and being fine but not shaking it.  Pretending the hurt was really something external.

Even testing with my own hands and eyes and rigorously discarding all real possibility of a biologically rooted hindrance hasn’t quite let me let it go.

So I’d set up experiments in the dark, well, with dim red lights, nonetheless in low-light, and have like fifteen minutes to kill to let everything in the set-up stabilize so I’d grab a coffee.  I’d wear sunglasses to the hospital cafe downstairs and order and rarely get really looked at.  There were much more interesting cases on feet and wheels to ogle at if that was your thing.

I’d get back to the darkroom and strip the shades and be back to full night vision in minutes.  It saved time, headaches too, in the short term, the shades.

When someone hits the lights it doesn’t matter if you have eyes or not. Without glasses or patches, everyone is blind.

Expediting the recovery from darkness was tactical for a day’s time, but by much later at nine or ten at night I’d pack my grief and glance back to make sure all the switches and valves were shut off.  God knows I’ve left them on to a flood the next morning, and walk outside to greet the same cold black air that carried me here.

More light would enter my eye in a minute’s worth of summer shine than would light my face for days.

In the weekly clinic I’d be in the hermitically sealed Low Vision Electrophysiology Suite, sharing the world of darkness with people who didn’t wear sunglasses so that would walk in and out of the dim with suave but because light hurt.

I wonder if my family in Sweden, up, way up north, shirk the black skies for months or somehow, somehow embrace the void with expectations of summer washing the dyes and memories of feelings of joy with the dancing colors in up, in the sky, swimming in nothing and alive, only existing in true nature when the light of bibles and tales swept their homes while those who do not choose if they chance a season of flowering clouds under the aurora could only dream.

***

“Mollers?” I shouted, not looking up from the clipboard.  It felt very doctorly to do it that way.  It was pretty clear on the order right there who I was looking for.  Four Mennonite kids between the ages of six and eleven, two girls.  The lady with an embroidered thing that I would call incorrectly a bandana rose and ushered four children towards me, walking alongside.

“Yes,” she nodded as they arrived at the waiting room’s gate.  After a brief introduction, I told her that I’d be doing a test that would last maybe a half an hour.  A well-dressed not old man sat watching from where the family rose, quickly returning to his newspaper when they had reached me.  I never knew if I should tell them how long the test would take, often times they’d been waiting for hours anyways.

“Would you like to join?” I asked.  She declined, waving under handed to me that I could cart them off.  I was always gracious when the parents would join if it were just one kid.  How do you walk with a kid alone when you know how much they’ll never see?

“This way,” I motioned to the oldest, the rest following like ducklings in line.  He had the chubbiness suspected of kids that butter everything.  We walked to the testing suite, entering quietly into the closet of a darkroom used for testing light vision when someone dark adapts.

I told them that I’d be turning off the lights and closing the door, and that if any of them didn’t like the dark they should speak up.  All nodded and stayed.

Hitting the lights, I raised the radar looking light to each of their eyes, starting with the dimmest light-mode, gradually increasing the intensity of the light.

The first was the eldest boy by default, spelling no’s at the dimmest and finally saying yes when the light reached it’s brightest.  This was normal by all accounts: no one sees well in dark rooms when the lights are first turned out.

Next was the youngest, the other boy, who said yes and no and no and maybe and five and wait is it the light in the corner and yes and wait and yes.  All the while I was hitting the dummy button, the keystroke made that sounds like the other buttons but didn’t flash any lights, only let you know if the person understood the task.  If the patient was a malingerer, in a manner of terms.  Most six year olds were pressed to give any kind of real data.

Both girls gave me no’s and no’s and no’s and finally a yes and a yes. They each understood the task and had little issue seeing the light at it’s brightest.

“Y’all’ live on a farm?” I asked, knowing the answer.

“Yessir,” the eldest.

“How far from here?”

“Bout an hour north.”  This kid was good. I mean, most kids don’t have a concept of distance in meters, let alone in time coordinates.  I asked him what they farmed.

“Dairy.”

“Cheese farm?”

“Mostly milk,” the kid.  I wished for there to be a parent there with whom I could chat.  To talk about medicine or eyes. Or who I might know from near their town, you never know.

“How much milk does a cow produce?” I asked, this whole time the other three sitting quietly.  A frightening lack of audible fidgeting came from these kids.

“Bout two hundred fifty pounds a day.”

“Two hundred fifty pounds a day! Holy!”  I resumed the test, increasing the lights, checking their eyes every five minutes.  The girls went from no’s and no’s and no’s and yes’s to no’s and yes’s and yea’s and yes’s.  The older boy stayed at no’s and no’s and no’s and yes’s, the youngest still a wash.  It was a case study, cut and dry.

Congenital Stationary Night Blindness, X-linked.  The boys, with their measly one X chromosome, had inherited a gene on that X that killed their night vision at birth. Low light meant no sight. Common in Mennonite men.  Mild in visual dysfunction but a disease of nocturnality.

The boys were up at five in the AM every day, choring, so they said.  They finished school after the eighth grade, foregoing higher formal education to work on the farm.

So long as their lives ran under the sun, their eyes would avoid the consequence of disease.

Maybe this disease has been with the Mennonites for such a critical period that the men knew early on their lives must be lived when they could see.

That higher education meant studying astronomy.

That their eyes were somehow keeping their dreams terrestrial.

That they were simple.

That they were OK with being simple.

That farming was neither a means to an end nor their life, but a duty under God.

That comparing them to the Amish was incorrect.

That diligence to their trade was virtuous.

That the sky may indeed be the limit.

That even without a cure they would still come back to the doctor’s office, just in case the cure had arrived.

That their lives would go on normally when they left the clinic.

That their lives would go on normally when they left anywhere so long as they got home.

The girls, while not showing signs of poor vision ran the possibility of harboring one of these eye-altering mutations that though would not cause themselves any vision problems, risked having sons like their brothers and grandfathers who would never see the stars at night.

An Arm and an Eye

“Well my arm, yea, always been kind of shaky. I was climbing a tree when I was six or seven and fell landed on a barbed wire fence. Ripped right into the bicep. Pretty clean cut, considering these barbs aren’t exactly fresh out of the sharpening factory. I was able to get good function back soon, but something about my ions or electrolytes just makes it go wild. Not like it’s trying to go all War Room on me, but testy. Can’t hold the wheel with it or I end up in the ditch.

So last week I’m cutting onions. For chili. Big game to watch. And I’m getting all emotional, the onions. My pop calls to chat about our bowl game odds, and I’m holding the phone with my shoulder to my ear, and these onions, there’s a like a box of them, it’s a big game, I’m making a big batch. And I’m cutting them with my right arm, the good arm. Dad can hear me sniffle or grimace or wince and it’s like he’s watching me, like he can see me through the phone line and asks me what’s the matter and I say nothing I’m chopping onions and I start to raise my right arm, my forearm up to wipe the tears cause I’ll like full faucet Oprah right now and my pop thinks I’m all upset that we aren’t going to win the the game or something. Like I’d just lose all hope and telecast that to him over video. And as I’m lifting my arm my left arm just jumps. Clenches.

My left arm is now barreling at my face at warp factor, and, OK, so I’ve punched myself in the face one too many times, and I try to stop it so I don’t give myself a ringer and my right wrist, the bottom of it, stops my flying hand. Well, tries to stop it. And my left hand catches the bottom of my wrist and the phone shoots out of my shoulder/face grip and starts to soar towards the stove and I’ve already kicked over the dish of cat food below by this point, while my cat was eating. Taco. His name’s Taco cat. It’s a palindrome, get it? Taco gets hungry when I make chili and I’m not going to make him just sit there while I’m cooking all kinds of goodness. I gave him a scoop of the masterpiece once and let’s just say the wife hasn’t quite forgiven me for the blotch on the sofa. If I get another cat, I might have to name him Burritotirrub. If you have anything better, I’m all ears.

(chuckles to self )

So the cat shrieks cause basically I boot him and the food into the face of the oven, the door was closed. Like, not into the oven. Basically a wall, from the cat’s perspective. And my left hand catches my wrist and at this point I’m trying not to deep six the knife since there was a serious cat-in-landing-zone threat, and I clench my hand as much as I can, I think, I mean my eyes are fixed to the right on the phone that is tumbling to its end, and it’s one of these all metal knives, got like steel grips if you can call them that, and my left arm is just charging through, like this is way beyond twitch and into full load-bearing curl, and the knife just barely slips from my hand and falls up and back into some seriously restricted airspace where my left hand is shooting for the moon by way of my head and it just jams the bottom of knife perfectly perpendicular to me, which I can just see out of the corner of my eye, which, of all the things to be looking at in this scene right now, you wouldn’t think it would be the phone.

And the knife is torpedoing at my face and, well I couldn’t exactly see the knife. A knife pointed directly at and approaching your eye looks like an antennal docking space ship, if you can picture that. And I think my right hand finally gets full executive order from the guys upstairs to seriously kick in and start saving the mouth it feeds, but by that time the knife was probably already totally through my eye and into socket and bone and I swear I must have hit some deep deep memory chapter cause for that brief instant I smell the flowers that my mother planted by the trees in our backyard that I would hide in as a kid, a scent that fast forward some thirty years I just now finally again experience. Lilacs, I think.

And a curtain just swept across my eye. And my right hand, protector of all things good, is like totally set on me not havingthe knife in any part of me. And before I could even think about whether or not just leaving the knife in there like they say, my right hand just rips it out and in one motion hurls it towards the floor and it, I’m telling you I tried to throw knives once and it is just impossible to get them to fly like an arrow like in the movies but this thing was a harpoon over the sun and I swear it had my cat’s number, but that animal must have like sonar or telepathy cause it does what any animal of Darwin does when a sharp pro jectile is headed its way, it jumps out of the way, the knife just barely licking it fur in red. And that damned cat probably thought I was trying to kill it: you know what it does? It fucking bites me.”

Brains in Space

Note inner circuitry, outer cortex.

Also note space, and travel-frequency inscriptions. Let us frequency inscribe the brain to space.

Visual cortex is the moon, frequently probed for its proximity to access.  Temporal lobe is mars, origin of classic space aliens and epileptic hallucinations.   Frontal cortices are nebulae, strange and shaping new forms.  The amygdala — black hole, dark and mysterious.

The hippocampus is Earth, channeling memories.

And the Sun? Oh, the Sun.

In the dark room

The Boy and the Paper

Written for NYU Science Communication Workshop with Stephen Hall.

The Boy and the Paper

My science picked up over winter break of 2009. I was holed up on the top floor of a research building in a frozen Iowa City, night after night poring over data as a second year master’s student. I had collected patient measurements in the eye clinic for nearly a year. Stargardt’s disease was the name, phenotype-to-genotype our game. I aimed to figure out how the laboratory DNA tests (the genotype) could be used to predict the degradation of patients’ vision (the phenotype). Cluttered graphs of the million ways we looked at the data piled up near a chair littered in wet snow gear. Pots of coffee were abundant.

After the new year, I traveled to Miami for an Iowa bowl game. I spent the days Skyping with my adviser. Beach-attired family members popped in and out of the camera’s frame. We closed in on a solution to our statistics, publication in sight. We planned on submitting to a decent genetics journal. Amidst final preparations, my adviser asked that I compare all of our patient data with another gene, Complement Factor H (CFH). CFH was implicated in age-related macular degeneration, the mother of all eye diseases. If I could find a link between our data and this disease, much current literature in the field would topple. Returning to Iowa several days later, we looked again at our numbers.

A signal had been hiding in the noise. Statistical significance emerged. CFH was correlated to the disease we were studying, Stargardt’s. In the world of ophthalmology, this was huge. I printed off the results and ran to my adviser. He asked me to run the numbers again. Sprint, recalculate, print, return. Again, a signal. He told me to run to our biostatistician. Soon after meeting, he too approved. The stats were legitimate. My adviser said we would now submit the paper to the journal Nature, with New England Journal of Medicine as our back up. I then raced to work on figures while my adviser packed up to leave town. We would be in constant contact.

That night I went home bubbling. A landmark paper in Nature is of the grandest yearnings for scientists . I returned to the lab early the next morning. Plotting figures, I noticed something didn’t line up correctly. The data looked impossibly skewed. I scanned the plot again. It cried of error. The residuals were supposed to add to zero. The residuals didn’t add to zero. My heart sank.

It took a few hours to convince myself that the data was indeed wrong. I knew my adviser’s flight would land soon and we had to talk. Three options occurred to me. One, I could jump off the ledge of our tallest building. Two, I could stick with the false data and push through. Three, I could admit that my calculations short-circuited. Afraid of heights and lies, I chose the third option and called my adviser.

I broke down. Hopes of publishing big — shattered. I let down everyone. I made the bad calculations and needed to admit fault.

My adviser’s response saved me. As a veteran scientist he knew his way around this bend. He assured me that getting one’s hopes so high over a silly paper was no way to make it in the long run. Just because the paper didn’t happen now doesn’t mean it never will. And people go years and careers without such work and still do great things, still succeed. I learned from him to bullet-proof myself from the gunshots of reward if I were to survive in the sciences. I inflated myself from a depth and moved on.

A reputable journal published the results. I finished my masters degree and decided thereafter to pursue a PhD elsewhere, not in Iowa. Tunes of both defeat and victory played in my head — bells to board the next train out of town. The lesson of my studies was to remain stoic in the face of high hopes or high water. I emerged not weak, but with an armored life raft in which to ride out the tides of science.

E.L. Nylen

November 2010

Space Clamps!

Check out the debut performance of the Space Clamps from this year’s Society for Neuroscience conference in San Diego, featuring Sara Steele on guitar, Emily Schulman on vocals, and yours truly on the keys:

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