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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.

4 comments to Stars and the Sky

  • Debbie Landis

    Wow! Superb article. You brought the world of scientific research, medical testing and high technology to that of a human interest level in which the lay-person could identify with and understand one of the many activities you are involved with, Erik.

  • I love how you let us experience darkness right along with you. Nice ! Good luck with your website – I’ll come check it out once in awhile. Love, Mrs. Peabody

  • michele brown

    This is really fascinating, Erik and brilliantly written! I like your summation of the Mennonites you tested…scientifically and culturally. Also nice that those of us that are science-challenged can grasp some of it!! Good luck!!

  • Lori Kautzky

    Erik, I felt like I was there at all of the scenese you described, great visual descriptions; what an interesting take on everything.
    Look forward to reading more – Lori

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