Seeing in the Dark

Seeing in the Dark

Transcript for Seeing in the Dark (full episode)

From Stanford University and KZSU, this is the Stanford Storytelling Project.

I made the decision that night was an ally.

Night is your ally, darkness is your friend.

Every day, the sun rises, the earth lights up, and we can see the world around us.

But every night, the sun sets, and we're enveloped in darkness.

Yet even in the pitch black of night, when we're out in the middle of nowhere and feel like we can't see anything, if we look up, we can see the stars.

The stars are there all the time, we just can't see them during the day.

When the sun sets, it's not the world that changes.

What changes is how we see the world.

We suddenly see things we couldn't see before, things we only encounter in the dark.

You're listening to State of the Human, the radio show of the Stanford Storytelling Project.

I'm your host, Xandra Clark.

Each week, we explore a common human experience through personal stories.

This week, Seeing in the Dark.

We're hearing stories from people who were thrown into the dark and then discovered new ways to see.

First, we've got the story of a boy who once had a special power to see things no one else could see.

Then we'll climb up a Welsh mountain and into the illuminated darkness with mythologist Martin Shaw.

After that, we'll head to an art classroom and hear how Lauren YoungSmith learned to see differently by drawing portraits.

And finally, we'll travel to Oxford, England, where Tom Skelton found himself unexpectedly in darkness.

Our first story comes to us from a house in the San Francisco Bay Area.

There's a storytelling open mic night going on, hosted by True Story, a group that brings friends together to share personal stories.

The story we're about to hear is about a child who had a visual superpower, and then he lost it.

It's told by a guy who wants to go by the name Guru Matt.

Here's Matt.

So this is a story about forgetting.

I always have considered myself a skeptic, and my mother, she is certainly a mystic.

Ever since I can remember, since the very beginning, first memories, I've been rebelling against her mysticism.

This even went so far that my brother and I have been rebelling together, and he's even further out than I am in this rebellion, in the fact that he recently decided that he fell in love with a woman who happens to be an evangelical Christian GOP advocate.

And they were married last year.

Before the wedding, they had the shower, and at the shower, my brother made my mother promise that she would not tell his soon-to-be mother-in-law that she had to leave the shower early because she was gonna go read tarot cards at a charity event.

So, my mom reads tarot cards for a living, well, as it's a side job.

But she's been reading tarot cards, it's been like this point of slight embarrassment, but also, I've grown to appreciate it.

It always really surprised me that my mom always called me her little guru.

This is sort of her story in a way, because the initial incident that created this story, I can't even remember, I was three.

And she told me that when I was three, she said, how was your day?

And, you know, she's cooking.

Mom, I think I'm an alien.

Why do you think you're an alien?

Well, mom, I can see the eye in the middle of people's foreheads.

What is mommy's and daddy's eye look like?

Well, your eye is very little, but you keep your eye wide open.

And daddy's eye, his eye is very big, but he refuses to open it.

Honey, I don't think that's very strange at all.

And I don't think you're an alien.

I was three.

Obviously, I don't remember that happening at all.

And I grew up a little bit.

I was five.

And my mom, you know, she's cooking maybe.

We cooked a lot together.

And I always like, you know, talked to her while we were cooking.

I was really interested in the way in the whole process of cooking.

And she probably asked me when I was five, she said, So do you remember telling me about when you were a little younger and you thought you were an alien and you said you can see the eye in the middle of people's foreheads?

And I said, Yeah, I remember that.

But I can't really do that anymore.

I don't see that so much anymore.

And it ended there.

When I was seven or eight, she asked me again, Do you remember that time we talked?

Do you remember that time you told me you were an alien and you could see people's third eye?

And I said, No.

And I ran off to play.

And then I remember this part.

I was just about to go into seventh grade.

It was summertime.

And we had a friend group.

It was like the neighborhood kids, right?

All different ages.

We're all pretending to be teenage mutant ninja turtles.

I always loved being Leonardo.

Because Leonardo had the swords.

And Donatello had the staff.

I always loved having the swords.

And I was the oldest, so I got to have the swords.

And we seriously would pretend and just get really into being teenage mutant ninja turtles.

Fighting and fighting all of the mutant, all of the bebop and rocksteady.

And Splinter was our mentor and he was this imaginary character that we looked up to.

And one day, I was watching us play and I stopped.

I was like, this is all a bunch of bullshit.

I don't think I thought that in my head, but this is a bunch of bullshit.

What am I doing here?

I'm a boy.

I'm not a Teenage Mutant Ninja Turtle.

This is really silly.

And I started ridiculing the other kids.

I was like, what are we doing?

This is so stupid.

And they just kept pretending and playing.

And I think they even looked at me with a little bit of sadness.

He doesn't know how to pretend anymore.

And I went off and I'm in seventh grade and getting ready to be a little bit older and play with the big kids.

And my mom, the way she describes this is she's like, you signed the contract.

You agreed with the world that the world is a certain way.

And you're fully engrossed in that world.

Probably around that same time, she asked me again and I remember this really clearly.

She's like, you know, you've always been my little guru.

Why is that, mom?

How could I be your little guru?

I'm so practical and skeptical.

And she said, you know, there was this time when you were a really little boy and you told me that you could see the eye, people's third eye.

And I just was like, mom, no, I didn't.

That never happened.

It could never have happened.

You don't know what you're talking about.

You know, I've talked to her.

She's told me the story many times since then.

And every time she tells me the story, I become a little more accepting of the story.

You know, I think about it now.

I'm 29, and she has no motivation to lie to me, to have, like, fabricated this story out of nothing.

And I think back to that 13-year-old self, and I hope that someday I can see again.

And sometimes I look, hoping that I can see.

Thank you That story was performed by Guru Matt at a true story event in the Bay Area.

It was edited by Lamees Sarka and Sophia Paliza.

You're listening to State of the Human, the radio show of the Stanford Storytelling Project.

I'm Xandra Clark.

In this episode, we're exploring the stories of people who lost and regained sight in one way or another.

In the last story, a boy tried to recover a special sight he had as a child.

Many of us have had similar experiences.

As we grow up, we often lose our sense of imagination.

Belief is replaced with skepticism, and fantasies are supplanted by a more practical understanding of the world.

But sometimes, we miss the way we saw the world as children, and we want to go back.

Our next story is about two guys who found a way to see beyond what most of us see every day.

They immerse themselves in darkness for days at a time in what they call dark retreats, restricting themselves from normal sight so that another kind of sight has to develop.

And, as it so happens, they're both named Martin.

Sophia Paliza brings us this story.

If you think about it, most of the universe is dark.

The womb is dark.

We arise from darkness.

This is Martin Lowenthal.

Martin spoke with us via Skype from his Center for Meditation and Retreat, the Dedicated Life Institute in Newton, Massachusetts.

Martin's been doing dark retreats for 20 years.

I've been a Buddhist practitioner for more than 40 years.

And many, many years ago, I'd heard about retreats in darkness from a Tibetan Lama that I'd gone to some teachings with.

And that's the first I heard about it.

And I became very interested in the whole idea of darkness and seeing and light.

Dark retreats are a form of spiritual retreat that is often combined with meditation and that takes place in complete darkness.

And they have a long tradition.

In ancient times, prophets used to retreat into caves to receive prophecies.

The Greeks used to go into the darkness beneath the temple of Apollo to see visions.

Today, there is a wide range of resources for people interested in the experience.

There is a yoga hostel that does dark retreats in Guatemala, lectures given at Harvard Medical School about them, and books and websites all dedicated to explaining to the lay person how to have the perfect experience while being totally immersed in darkness.

For Martin, the experience is reflective and involves a lot of meditation.

But it's also been incredibly creative for him.

One year while I was in retreat, I just started writing poetry and wrote poem after poem.

And that happens frequently in my retreats over the last 10, 12 years.

I've developed a way of writing in the dark.

And so when I write a poem, I'll write it out, but I won't necessarily get the line breaks.

That's the only thing I add afterward, but I don't edit them.

This one's called Terrain of the Dark.

Maps and eyesight are useless in the terrain of the dark.

Only the perceptions of a sacred heart can behold the vast intimacy of this primal landscape.

This is called the bath.

My pleasure-loving skin delights in the caresses and embrace of the bath.

I marvel that my body does not follow the water down the drain.

For Martin Lowenthal, darkness and temporary blindness can become tools, tools to tap into inner creativity or to find peace, respite from everyday life.

If carefully directed and controlled, in darkness there is serenity and meditation, and eventually there can be answers to questions one goes into the dark retreat with.

Martin Lowenthal conducts his dark retreats in his center.

There is a special retreat room equipped with a bathroom and a bedroom that the participant gets to see before the lights get turned out.

And when he goes into the darkness, he directs his experience.

He focuses on creating a relaxed and disconnected environment from the stresses of everyday life.

But what happens when you take another approach to this experience?

Add another element to the darkness, like the wilderness.

What happens when the immersion in darkness is less directed and more of a surrender?

Night is your ally, darkness is your friend.

This is Martin Shaw, another Martin.

Martin Shaw is a visiting scholar at Stanford from Templeton College, Oxford, teaching a class on oral traditions and mythology.

Specifically, he's very experienced in what he calls wilderness rites of passage, the idea that it's important sometimes to leave your community temporarily and spend time in deep reflection in the wilderness.

Somewhere along the line, through his involvement in wilderness retreats, he heard about dark retreats, and he was curious.

Stories, fairy tales, myths and folklore where there are often underworld descents, people find themselves literally without sight for long periods.

In fact, in many stories, it is the first thing to go when someone has an experience where the life they were planning to have falls away, they find themselves in some kind of an emergency and normally under the ground somewhere.

And what happens in the stories generally is another sense they have has to develop themselves.

It's a sense of smell, it's a sense of touch, it's something else.

Martin didn't have any burning questions he wanted to resolve.

He wasn't trying to find peace on a specific issue.

And he wasn't looking for the darkness to help him tap into his creative energy like Martin Lowenthal.

So what could the darkness bring Martin?

What could happen to him in the darkness?

In his early 20s, Martin decided to try and find out.

That would have been in the late 90s, and it would have been in an area of Wales called Ponterwyd, which is terribly difficult to find, I'm pleased to report.

You can barely Google it.

Going back in time, remembering, let me think it was spring, we've had to drag our equipment right up the side of, when I call it a mountain, to be fair, a Welsh mountain and an American mountain are not quite the same thing.

In your eyes, let's call it a big hill.

And he had to crawl up with all of his equipment.

But luckily, Martin wasn't quite alone.

He did have a group of people camped near him throughout the experience just in case of an emergency.

So, you know, twice a day they'd call out, you know, you're still alive, you're in there, you're okay.

And I'd say, yeah, fine, or not.

He was going to fast for two days and two nights, alone and in the dark, inside of this womb-like constructed shelter on the side of this Welsh mountain.

So what I recall is a certain amount of anxiety.

I had my last meal.

I remember being wrapped in a blanket.

And then to get into this small structure that was, as I said, absolutely laden down with blankets and black tarps and everything, we'd had to drag up the side of the hill to get there.

I kind of crawl into this tiny space.

The space was so small, you couldn't even stand up in it.

It was rather like, you know, you were in a kind of crescent moon on the ground in the dirt really, and it's pitch black and you can't see your hand in front of your face.

And remembering, oh yeah, I signed up to do this thing.

What is this?

What I couldn't have anticipated was how comfortable it would feel.

It was almost a relief to be in the dark.

It is profoundly inward, because actually something has been taken away.

Rather than feeling expansive, you kind of contract.

So it wasn't a sense of being sealed in, and I couldn't hear anything else.

I could hear weather.

And actually what happened to me was, a few days into it, a tremendous storm descended.

And that was really, it was exquisite, actually.

If you like the sound of rain on a tin roof, you can imagine it going on for hours and hours.

I remember the strange experience about halfway through of something actually climbing over the small structure that I was in and scuttling off the other side.

And gradually, over time, falling into what I would call a reverie, which is a kind of a state where, as I said, your dreaming or your thoughts almost became luminous.

I started to see images almost floating in the darkness.

It was as if there was a kind of conveyor belt in front of me of various scenes.

Which would dream like in nature.

Martin says he tapped into a different kind of consciousness, something that exists only when we stop looking, when we are fully present, something he calls wildland dreaming.

It happens when you've been out in the wilderness long enough to let go of your human concerns, both physical and emotional, let go of the need to eat or the feeling of boredom, let go of distracting thoughts and feelings.

Basically, when you've let go of everyday things, enough to let other, less definable things in.

Is when you, it is not you doing the dreaming anymore, you are getting dreamt, you're getting dreamt.

And that's a big distinction.

So it's not just you and your neurosis anymore, or you and your psychic world.

It's actually something almost coming out of the ground itself.

It wasn't as if I had some kind of enormous epiphany about the shape of my life and what it was gonna become.

And it interests me that most of the information that came in the terms of those visual images were things that were connected either to the earth or ultimately my work with it.

A question that I came out of it with, that to this day I don't have an answer to and I still reflect on is the fact that while I was in there, some of the things that I saw in the dark, then at a later date in my life played themselves out.

And that I do not understand.

And I don't know how that can be.

Because like most people, my understanding of time is like a straight line.

You know, I'm here and then I'll go back to England and that'll be in three weeks.

So how can it be that by going into a dark place and sitting still, things that have not happened yet, play themselves out in front of you?

Interestingly, the things that I saw were fairly mundane.

They weren't massively significant, but they happened.

Can you share some of those Earth images that you saw?

No, no, I can't.

I can't.

I've given more than enough in terms of that.

Some of this, you know, I mean, it's disclosure.

What I'm more interested in is encouraging people to think about that themselves.

And it's still something Martin thinks about.

I think I came out of it with a lot of questions about what happens to our sensing nature and our experience of consciousness and time when something as profound as sight is taken away.

He was expecting something different, perhaps something more complete, more defined.

I mean, really, if you want to know where this really comes from in my life, it's the fact that when I was a little boy, if my dad had a really a major issue to be thinking about, he'd leave the house at about 10 o'clock at night and I'd be up in my little bedroom and I'd hear the door close and he'd go out into the dark and he'd walk till often, it seemed phenomenally late.

It was probably one or two o'clock in the morning and then he'd come back.

And often he'd had some sort of resolution about the problem.

And so I went in, it's occurring to me now, I went in probably because since a young kid, I'd had this image that the darkness could help you unravel things that you probably couldn't in the daylight.

Martin came out of his experience differently than his father.

Martin's experience was more ambiguous, more bewildering.

Yet in other ways, he also emerged from the darkness, that not knowing, being able to see so much, just literally being able to see more clearly.

When I crawled out finally, I think it was almost too much for me to take.

There was so much to see, texturally, and seeing people, as I said, was overwhelming.

Seeing them smile and the preparation of food and the care.

It was just an overwhelming feeling of coming back into human relations, really, and the relations of that place.

I felt very grateful for having been there and being able to have this experience there.

Whether through the creativity of Martin Lowenthal's poems or through the challenge of Martin Shaw's questions, we find clarity in re-entering, a clarity in the act of closing our eyes, if only to be able to experience reopening them later.

I think when I came out, it wasn't light, per se.

It was the glittering of the dew on the leaves.

It was the detail of everything, yeah.

It was euphoric.

You just heard from Martin Shaw and Martin Lowenthal.

Their story was produced by Sophia Paliza, featuring music composed by John Hollywood.

This is State of the Human, the radio show of the Stanford Storytelling Project.

I'm Xandra Clark.

Today's show is Seeing in the Dark, what it means to give up sight in order to see something deeper.

The Martins showed us that there may be something to be gained by depriving ourselves of sight.

There's a special kind of inner sight that can come from a removal of outer sight.

Thinking about it, one of the most common practices in meditation is closing eyes.

Closing our eyes is a basic stress reliever and the most tried and true way to turn attention inward.

But just because our eyes are closed, it doesn't mean we can't see.

In fact, as both Martins showed us, we can see in darkness.

We have dreams, or sometimes we get dreamt.

But what about times when our eyes are open, the lights are on, and we get stuck in a pattern of seeing that we can't change?

Sometimes we have one way of looking at something.

Then that way of seeing becomes insufficient, but we can't think of any other way to see.

We hit a wall.

Lauren YoungSmith is a student and artist who hit this wall recently in her work.

Darlene Franklin brings us this story, a warning that some of the language is graphic.

In this story, we get a peek inside the head of a young surrealist artist.

Lauren YoungSmith is an illustrator, painter, DreamWorks animation intern, and a senior at Stanford.

Her work depicts scenes of little humans unknowingly surrounded by smirking monsters whose bodies are too big to be noticed.

They just blend in with a natural environment.

Other illustrations show bodies in flux.

Half robot, half human, zombies, and humans morphing into mythical animals.

This is the story of how Lauren grew as an artist by learning to see things more deeply than they appear.

We'll start the story back when she was a kid.

Most of her art was cartoons.

I think that I was always drawing dragons and mermaids and stuff.

It's just like probably a circle with some sticks coming out for the head and the same ones that's smaller for the hands.

I learned to draw the like, the little mermaid tail.

It was pretty bad.

Everyone just learns how to do line drawings.

As Lauren got older, it became clear to her and to her teachers that she was fascinated with bodies.

When I was in lower school, we did sculpture, we did clay sculptures for a while, and I made a mermaid, and it was totally better than everyone else's, I thought, at the time.

But it was a mermaid that was topless, because mermaids, they don't have clothes, they live in the ocean or whatever.

And I got in so much trouble from my teacher.

She was like, you need to change that.

And I was like, why?

And she wouldn't explain it to me.

So Lauren kept on drawing naked people.

She took classes, she got better.

She became a pretty accomplished cartoonist.

She had the ability to quickly characterize anyone she saw as visually striking.

I think drawing the human form is really fun and informative and evocative and something that people can always relate to.

So I've just always done it.

But by the time her freshman year of college had come around, she had hit a wall.

She felt like she wasn't drawing as accurately or as well as she wanted to be drawing.

I always thought I was a good artist because I could draw things and make them look like what they looked like.

And it's really frustrating when you can't do that anymore.

Lauren had always drawn the outlines of things, but she had stopped improving, so she enrolled in a figure drawing class at Stanford.

There, her teacher told her to look beyond the outline.

There are different schools of thought about this, but a lot of artists and instructors on the Stanford campus believe that to make an effective drawing, you're supposed to draw from the inside out.

Here's Professor Ala Ebtekar, who taught a gesture drawing class winter quarter, telling his students the same thing that Lauren's teacher told her.

Let's keep it with the architecture of the body, where the leg is, where the spine is, with the width of the charcoal, okay?

Embody that.

Can you do that?

Like, feel it.

If you're not feeling it, you can't draw it.

Let's draw that.

I think a lot of art teachers' main job is trying to break habits, because a lot of the times you don't learn the foundations of things when you were able to just do something and make it look good.

So that was really, really good teaching for me to go back to the basics and be using, like, a thick thing to try to create a form and, like, not being able to do it, being frustrated, and then realizing once I got it right that that was what I actually needed to start with and that it would make the drawing better, ultimately.

Lauren kept struggling to capture the impulsive gestures of the human models.

One day, they didn't have a model in class.

Her professor put a skeleton on the pedestal.

He posed it.

He said, This is your model.

So I would do the skeleton and then just, like, fill in the imagined model around it just for fun.

It just really helps to be able to think about what things are made of rather than what they look like.

It gives you a much more interesting composition or, like, ultimate piece when you've got, like, a see-through model and you can see the bones and stuff.

This created an obsession with the innards of things.

She started actually seeing and thinking inside out when she was drawing.

She began imagining the interiors, skeletons of everything.

I just liked this cool idea of there being the human system inside of organic things.

And I kind of just ran with it.

I was brainstorming for a animation.

I was using the song Cherry by Ratatak, because I just want, I always start with the song that I want to use.

She has a bonometer thing that she can see everyone's bones with, and then see pears and butterflies all have bones.

Everything has bones except for the girl.

And then she meets this guy who comes out of the tree, the sack in the tree in the end, and he has bones, and he gives her a mask, a bone mask, and then they explode.

I guess it goes back to you guys asking why I'm interested in the human body.

It's just something that is infinitely interesting.

If you impose the human body structure system onto things that don't have it, just it's an interesting idea to me.

I'm sure subconsciously some of it came from having paid attention to outsides and insides for so long.

Lauren recently visited a class where med students study human cadavers that have been dissected.

She checked out a body that her friend was assigned to study.

She saw all the parts that make up a human body.

It's totally crazy.

It's like completely insane to walk into a room full of body bags.

Lauren's friend unzipped one.

Everything is like cut up and dissected and in pieces and all over the place.

So it doesn't feel like looking at a human anymore.

So I was just like drawing texture details.

I don't know, she'd pick up an arm and pull the tendon and it would like move.

And then they have Tupperware on these shelves with just like sections of the body.

And she just pulled one out and was like, I could not figure out what this was for so long.

And then she like flipped around and was like, finally got it.

I was like, what?

That's a butthole.

Literally, can you imagine just sitting there like turning this punk of meat around and being like, what the heck is this?

Oh, I see.

I mean, you couldn't tell what it was, you know, because I was just doing like hatch marks.

It's really just looks like chicken meat.

I can't describe it any other way.

Maybe that's why it's so strange because it just, it looks like something so familiar.

And it's just really strange to think about the materiality of everyone around you.

Lauren so wanted to see the insides of the human body.

She had spent the past few years since that figure drawing class, imagining unseen insides.

But when she tried to use the exposed bodies as the framework to draw a representation of their living forms, she couldn't.

If you just got a pile of meat and bones, there's no real, there's no way to accurately represent the body that was, so there's no point.

It's gonna look like a pile of meat either way.

We're all just meat, we're chicken meat.

Lauren saw that the bodies were just fleshy, meaty, material parts when they were disassembled from the bones and undefined in space.

She didn't see it as a body anymore.

She tried to draw it, but she couldn't.

She saw that without the rigings of a supportive structure, it didn't hold character, because there was something that those bodies didn't have, life.

The animation could be about everything having like an underlying structure system, like a universal structure that you can't see.

The inside out view of seeing, the world as intriguing, complex, gross, beautiful and impulsive, like a person's bodily contained existence.

This perspective can be seen in all of Lauren's art.

And the more she is able to depict this and play with it, the better her art becomes.

To be a good artist, to truly see, you have to see the unseen structures, both anatomy and the life.

I think it's just the most interesting thing that exists, people's bodies.

They're like the only thing that we have, the only thing that's completely ours.

They're all completely different, and they depend on each other.

And that's where like personalities are encapsulated, like nothing else really has like real personalities.

So just by representing bodies, you're automatically like creating stories.

That was Lauren YoungSmith and Ala Ebtekar.

The story was produced by Darlene Franklin and Rachel Hamburg with original music composed by John Hollywood.

This is State of the Human, the radio show of the Stanford Storytelling Project.

I'm Xandra Clark.

Today, we're talking vision and how we sometimes have to lose one kind of sight in order to gain another.

For Lauren and for Ala, different ways of seeing can help produce different kinds of artwork.

Looking at the body as an alive thing changed the way Lauren drew.

Sometimes though, changing what we see or don't see isn't a choice.

For Tom Skelton, it wasn't.

Hello.

Hello.

This is Tom Skelton.

He's a friend of mine from a town called Milton Keynes, about 45 miles northwest of London.

Well, if you're going to do a program about blindness.

Tom's got a story.

So it was the summer of 2009 when I was 20...

21, going on 22, and I was in Maudlin College Gardens.

Maudlin is one of the 40-some colleges or houses within Oxford University.

Tom had been a student at Oxford midway through his course of study, but he'd recently needed to leave school.

I wasn't doing very well as a person.

He was trying to move on and start over by enrolling in a new school.

He was set to begin at King's College in London in the fall, but until then, it was summertime.

I was in Maudlin College Gardens with a girl, and I had something in my left eye, like a fly or something like that, and so I tried to get it out of my left eye, and whilst I was trying to get it out with my left eye, I decided to look at her and see what she was doing, because she was reading the paper.

Her face was a little bit blurry while looking at her, like pretty blurry, so I thought, oh, a little weird, isn't it?

And then I kept noticing again that there was a bit of a blur in my right eye.

Tom didn't think much of it, but the weird thing in his eye didn't go away for days, so he went to get it checked out.

The first doctor didn't see anything.

He said, I can't see anything wrong with it.

I'm gonna send you to local optician.

The optician didn't see anything either.

So it was all quite weird.

I definitely had something.

They said, let's make an appointment at the Oxford Eye Hospital.

They scheduled the appointment for September, a few months away.

My right eye was still, you know, it was getting a bit worse, the blur in it, but I kind of thought it was probably a cataract or something, it was very odd.

But I could still see fine because my left eye was completely fine.

But by September, Tom started to get a bug-like blur in his left eye too.

That made him do some thinking.

He remembered that a few of his family members had what's called-

Labor's Hereditary Optic Neuropathy, and it is a mitochondrial genetic eye disease.

It's passed on through the mother's side.

So only women are carriers of it and only men develop it.

In most cases at least.

Basically, the optic nerve dies and central vision disappears.

Central vision is what we use for major tasks, like seeing people's faces, driving, reading.

Without it, we're severely sight impaired.

Symptoms of labor had started to crop up in his family members who had it around age seven.

So Tom figured he'd beaten the odds.

But then he started doing some research.

I was just checking on the computer and I thought, look, maybe it could be this.

Maybe, I probably isn't, but I should just look it up again to make sure.

And then it was like, you'll have it in the first eye of a period of about two or three months.

And you know, the central vision will blur and start to go and then up and then the second eye.

And I thought, oh, fuck, fuck, duck, this is what it is.

When Tom finally went to the eye hospital for his appointment, the results came back positive.

He had labor's disease, which meant he would probably lose most of his sight in the next few years.

He would have some peripheral vision, but everything in front of him would become a blur.

It was a bit like, I suppose I was a bit sad for all the stuff I wasn't gonna see again.

I suppose I was mainly just a bit annoyed.

Realized I wouldn't be able to make eye contact with people anymore.

And I was always told I was very good at making eye contact with people.

And most people are quite bad at making eye contact.

So I kind of thought, that's a bit rubbish.

I can still do a decent impression of it, I hope.

I hope I'm looking in the eyes right now.

Yeah, good, good.

For a number of weeks after receiving the diagnosis, Tom didn't tell anyone, not even his family.

To acknowledge it, tell my friends or my family, would be to acknowledge that it was truthfully happening.

And one of the ways to prolong the illusion of it not happening or not necessarily definitely happening was to not tell people.

And also, I don't know if it's a case of admitting a weakness, you're having to ask for help.

He was supposed to be moving to London and beginning the new course at King's College, but his failing vision made that tough.

I was meant to be finding a house and moving in with my friends, and I just put no effort into that because I was basically thinking, I wasn't really thinking about how to move forward with it.

Like I didn't reply to emails and stuff from my friends saying, Tom, we found this house, what do you think of this house?

I was like, oh, because I didn't want to tell anyone.

But equally, I couldn't read emails very well to keep up the pretence.

And I wasn't telling my parents why I wasn't, you know, I wasn't doing the reading for the course.

And of course I've been quite excited about previously.

And then kind of wondering around, bumping into things and dropping a lot of glasses and stuff like that.

Having made a decision to go to London and start a new life, and then suddenly, having seized control of my life in that way, to suddenly have it smashed up like that, and I felt like not in control of my life.

Put yourself in Tom's shoes for a second.

Tom had had to leave Oxford midway through his course, but he'd committed himself to getting his life back on track.

He'd been getting ready for the program at King's College, excited to start over, when that plan was dashed to the ground.

He couldn't begin at a new school if he couldn't see.

Accepting that he would lose most of his sight turned out to be a long process for Tom.

That process started when he was finally able to open up to his parents.

So eventually, when I told them that was all quite a liberator and a release, because then they could, and they took me down to London a bit for the university and it helped me decide to defer.

I finally told all my friends, which is a big relief as well.

Me and my friend Tom sent a long message to about 16 other friends saying this had happened.

One of the friends thought it was a joke, but everyone else responded very good.

Deciding to defer meant that Tom could stay in Oxford for longer, until he sorted everything out.

And that meant he could continue with a hobby he'd taken up a few years back.

Improv.

Now for the first suggestion, can I have from you the title of a story?

Tom was a member of the Oxford Imps, an improvised comedy group that performed weekly in a pub.

That's how I met him.

I performed with the group when I studied abroad in Oxford.

Say what, say something you can see.

And it was as if I hadn't, despite not being able to read hardly at all, unless it was in like font 48 size or something.

And despite not, what else could I do?

Couldn't drive for four.

So, but not definitely not being able to drive.

Yeah, not being able to be a footballer or, you know, see a mountain.

I could still perform as well as I could before.

If anything, I might have got slightly better for some reason, you adjust to each performer you're performing with.

And I think other people may be, you know, maybe don't do other things as well.

And so you have to adjust to them.

That's a weakness that I have in performing that I won't be able to see a mime as well or be able to see like subtleties on the stage.

But everyone has weaknesses.

But I'm sure people get pretty.

Yeah, they must get a bit annoyed when I lump onto the stage and define what they've been clearly doing is cooking.

There's something like watering a flower or something like that.

But.

Tom started to be okay with doing that, with trying to guess another actor's mime on stage, even when he knew he'd probably guess wrong the first time, and the second time, and maybe the third and fourth times.

It didn't matter.

He started to accept his condition, and the lack of control that went with it.

That's what improv is about, after all.

Giving in to the chaos and celebrating failure.

Mistakes are gifts.

Improv is about saying yes and.

It's about showing up without worrying about preparation.

Not a bad perspective for Tom at the time.

And as it turns out, if you take that mindset, blindness is kind of funny.

And a fellow Oxford imp felt the same way.

This is Dougie.

I'm Dougie Walker, and I'm 25.

I'm a philosopher and comedian.

Who works in a park.

And in a strange coincidence of fate, Dougie is also a bit blind, or you know, half blind.

Like I said, a really strange coincidence of fate.

It's a really rare condition, Stargret syndrome.

Immaculary dystrophy caused by a buildup of vitamin A at the back of the eye.

They think that it skips like five generations, but it's quite common for sort of two siblings to have it.

So me and my brother both have it.

Dougie's older brother got diagnosed with it first, but Dougie didn't know at that time that it could happen to him too.

It wasn't like seeing something and thinking, oh, I might have that.

So I was just sort of made fun of him.

Which I suppose has a nice smack of hubris to it.

Dougie got diagnosed with Stargardt's at age 17, but that didn't stop him from making jokes about it.

I make quite a lot of jokes about it.

I make quite a lot of jokes about most things.

There was one moment the other day where in a scene you played someone who was blind, and then at the end of the scene, you said, it's okay because I'm partially sighted, and everyone laughs.

And I wonder where does that kind of humor come from?

I just make jokes about it because it's just a thing that's around me all the time, and it's just something I make jokes about.

You get some really funny questions.

A good one is, so what can't you see?

To which, of course, the answer is, well, I don't know.

I can't see it.

People almost always ask, oh, right, so, you know, do you not need glasses then?

And you're kind of, if I needed glasses, I'd have glasses.

You know, it's not, you know, a miraculous piece of technology.

A friend of mine, you know, she was asking, you know, see that sign over there, can you read that?

And can you tell what that is?

You know, quite sensible questions, really.

And then after all that, she covered her mouth with her hand and said, so can you tell what I'm saying now?

How, and I was utterly baffled.

I had no idea what she thought she meant, you know?

Tom gets some funny interactions with people, too.

I think actually being blind is one of the positive aspects about it, genuinely, is that people are impressed if you do, this is gonna sound very, are impressed if you achieve anything.

It's kind of nice because when your disability doesn't end you at all, then you're still getting more praise than the normal people.

You ate your cookie, Tom, well done.

You managed to eat all your dinner.

Well done, that doesn't happen, that doesn't happen.

Sometimes I use humour to let them know that I haven't taken offense.

So I work in a park and I was working with someone who normally works in a different park but they were in there, they weren't quite sure what was going on, I was new so I wasn't quite sure what was going on and they said, oh, it's the blind leading the blind and then they suddenly kind of realised what they'd said and kind of looked slightly kind of, you know, they weren't sure if that was okay.

At that point you just, wow, the blind leading the partially sighted and you laugh and they laugh and it's, you know, you kind of, they realised that actually it's fine and they kind of gelled with it.

For Dougie, humour plays into his everyday life and lessens the seriousness of his condition.

Tom has taken comedy even farther.

Once he accepted the fact that he was going to lose most of his vision, he decided, with some encouragement from another Oxford imp, to use humour to tell his story.

If I can utilise this for comedy, then it's turning into an advantage rather than a, rather than just something that would hinder me doing it.

So he wrote a stand-up comedy act about being blind.

I kind of locked myself in my room for about an hour and just wrote down ideas.

He worked on those initial ideas over the course of a year, performing his act for friends, getting feedback and taking it to the comedy clubs.

I asked him to perform it for a group of us Oxford Imps.

Hello, ladies and gentlemen.

Thank you for having me.

Now, could you please put your hand up if you know anything about mitochondrial genetic eye diseases?

I can't actually see if any of you have got your hands up because I myself have a mitochondrial genetic eye disease.

So I'm going to shoot you in a crowd full of ophthalmologists and tell you a little bit about mine.

So ladies and gentlemen, my disease is called Laber's hereditary optic neuropathy, or Laber's for short.

And what it basically means is that I only have peripheral vision.

I have no central vision.

My central vision is a blur.

So for example, your face is a blur, your face is a blur, your face is a blur, you have lovely arms.

And so it goes on like that.

And it's a pretty shit disease, ladies and gentlemen.

It's a pretty shit disease because only men can get it and only women can pass it on.

Like AIDS.

And so, here you ask, there must be advantages and disadvantages to having this disease, and there are.

There are many advantages.

Like, for example, girls previously used to think that I only liked them for their faces or their bodies or their arms, and now they think that I like them for their personality.

And there are other obvious advantages, ladies and gentlemen, like having the moral high ground.

Say all your friends are over for a weekend and you've had a good night out and then the night after, you're like, how was the night last night?

Oh, I was trollied, oh, I was smashed, oh, I was fucked, you want to see?

Oh, man, I was blind drunk.

No, you weren't.

Only I can be blind drunk.

And yes, there's a moral high ground to joke.

And also I get lots of cool names.

You can call me the blind prophet, VIP, visually impaired person, or my personal favorite, partially sighted young cyclist hobbling oddly towards wobbling and tumbling.

Or as I prefer, it's psycho twat.

So if you see me later, just say psycho twat and I'll respond in kind.

And so there's, there must be disadvantages, I hear you say.

And yes, there are, like I want to kill myself.

No, it could be very well.

And yeah, also there's another disadvantage is that I can no longer see all the weird stuff that's happening on the street.

And now my friends have to describe it for me.

It often goes a little bit like this.

Look, Tom, over there, a boy with an elbow for a face.

Look, Tom, over there, makes people look like crazy of a coalition policy and is not still has a standard detention.

Look, Tom, I'm a sir, a little pimp and I go squatting on a meadow.

And finally, ladies and gentlemen, finally, because of not being able to make eye contact very well, because I stare intensely at a lot of things, read stuff up close, a lot of people, especially bouncers, always think that I want drugs.

And sometimes, ladies and gentlemen, I'm not.

I think it could be a lot better, the stand up routine, if it was a bit more emotionally open and painful about my own coming to terms with it.

At the moment, I probably feel a bit more comfortable making like jokes about sex and blindness than the emotionally painful stuff.

But maybe that will come later.

Tom knows not all of his story can be told through jokes, but for now, he's found that humor is a useful way to tell part of it.

Dougie has used his eye condition as fodder for creative material too.

I wrote a theater piece about it actually, like about a five minute monologue about the sort of, the inconsistency of your expectations of people being disabled, you know, like demanding that people should look after you, but demanding that they see you as a totally capable individual and how those two things are really incompatible and you sort of have to accept that you're not a completely capable individual.

But I always end up thinking that actually it's not the thing I want to focus on.

You know, I am, it's a feature, it's a feature of me, but it's only one of many.

You know, I think to most people who I meet, I'm more beard than partially sighted.

So really, you know, I should be doing more standup comedy about having a beard than being partially sighted.

How long is your beard, Dougie?

How long?

I don't know.

It's probably, when I stretch out, it's maybe an inch and a half off my face.

I don't know.

I've been growing it for six months, six months of beard.

Very impressive.

Both Tom and Dougie have adapted to a new way of seeing the world through their loss of sight, and humor has helped them along the way.

They've both used their eye conditions as sources of humor, and have used humor and improv to ease the seriousness of being partially sighted.

They know comedy isn't everything, but neither is partial sightedness.

It's just one part of them.

Yet Tom thinks that that one part of him may have actually done some good for him, may have clarified his life in a way he didn't expect.

It's probably made me less a sort of a bastard, possibly.

So I think it has brought me closer to certain friends a lot, and it's, when you have like a narrowing of your life's choices, it can be, well not as liberating as everything more, but if you wanna believe it's as liberating, then it can be.

I think, cause I wasn't doing very well as a person, I felt, for a couple of years before my sight went, and I think I've been doing better since.

It's just made things a bit clearer, if I'm allowed to get away with such guff.

That was Tom Skelton and Dougie Walker.

Their story was produced by me, Xandra Clark, and original music was composed by John Hollywood.

You've been listening to State of the Human, the radio show of the Stanford Storytelling Project.

Today's show was Seeing in the Dark, how losing our sight can help us see anew.

The way we see the world is malleable, and at any moment, we're only one light switch, one art class, one Welsh mountain away from disrupting the vision we know.

Today's program was produced by Sophia Paliza and me, Xandra Clark, with help from Rachel Hamburg, Darlene Franklin, Lamis Zarca, Natasha Ruck, Kristi Hartman, Charlie Mintz, Victoria Hurst, Josh Hoyt, Heidi Thorson, Nina Fouche, and Jonah Willinghans.

Featured in today's show were Guru Matt, Martin Lowenthal, Martin Shaw, Lauren YoungSmith, Ala Ebtekar, Tom Skelton, and Dougie Walker.

Original music was composed by John Hollywood.

For a complete list of music, visit storytelling.stanford.edu.

For their generous financial support, we'd like to thank the Stanford Institute for Creativity and the Arts, the Vice Provost for Undergraduate Education, and Bruce Braden.

Remember that you can find this and every episode of State of the Human on iTunes.

You can also download them and find out more about the Storytelling Project's live events, grants, and workshops at our website, storytelling.stanford.edu.

Look out next week for more stories about the State of the Human.

Until then, keep the lights off and your eyes open.