I blinked my eyes open. Early morning sunlight sneaked through the blinds on my window, casting a glow on the mess on my floor. Sitting up, I saw my bedroom in complete disarray. There were ripped Hefty bags and stuffed animals spanning twenty-four years strewn across my rug. My room looked like the scene of a barnyard massacre. Looking under my covers, I discovered I was clutching a giant pastel-blue stuffed bunny I'd received as an Easter gift when I was twelve. I could only assume I had spent hours in frantic search of this toy, tearing through our storage areas until I located it. I didn't remember doing any of that, couldn't remember the evening at all. But I never could when I was on Ambien. Groggy and confused, I tossed my comforter to the side and started to clean up the mess.Read More
Sometimes you can look at a child and say, "Man, he was meant to be a basketball star." That's what people used to say about me too, except instead of basketball star, they said lawyer.
I was born in a matching sweater set and shiny Mary Jane shoes on February 26, 1988. Rumor has it I climbed down a stack of reference books to accept the birth certificate. I have spent more recess hours in a library—more hours in a library in general—than probably most members of Congress. I have, on occasion, very politely argued my way out of paying for school milk (where else do state tax dollars go?). I started making study flash cards long before my teachers recommended it. When I became the only member of my rather large family to require a nice, thick pair of glasses, everyone just said, "Of course."Read More
I arrived in Jersey City with my mother and brother on a dark night in January 1986. Mom had fallen in love and had dragged us along to her new life with her new husband. We were transplants from Southern California, where our hometown had experienced a cold snap just a few months before. Temperatures had plummeted to fifty degrees. But this was worse. Even in my warmest coat, I shivered. My bare ears stung.
A few days later, my brother and I enrolled in our new school, PS 23. In California, our schools were named after mountains and fruit trees, but in Jersey City the education system had opted for utilitarian numbers. It made me feel like a number myself.Read More
Cyndi Freeman's story of receiving frightening advice from her doctor—and how it inspired a surprising career change—was recorded at one of The Story Collider's first shows, in August of 2010. In the "Bad Medicine" issue of our magazine, we bring you an illustrated version by Tammy Stellanova. (Contains explicit images.)Read More
Rapunzel sucks. Even in her most tragic, desperate moments did she really ever truly understand the value of good hair? I don't think so. Because of her, and Barbie and Marilyn Monroe, I've always assumed that the saying "Blondes have more fun" is true because being a brunette was absolute torture, turning gray early wasn't as nearly as positive an experience as Andy Warhol said it would be (he dyed his hair on purpose at twenty-four so no one would ever know how old he was—or so he said), and that time when I went bald, well, it was an epic bad hair day. Umm, because I'm a girl.Read More
[mp3-jplayer tracks="Margot Leitman@http://s3.amazonaws.com/storycollider-podcast/TSCSpecial3-Leitman.mp3" width=60%]
When we were first starting storytelling, we studied with The Amazing Margot Leitman (although she just goes by "Margot Leitman"). She would often use extraordinary stories and bits of stories to illustrate her points, so we almost didn't notice when she mentioned something strange was happening with her hearing. We did notice when it developed into a full medical mystery. A year later, she told this story at one of the early Story Collider events. Listen to the audio above, or read the transcript on the next page.
—Erin Barker and Ben Lillie
It was Boxing Day 2009, and I was doing what it seemed the entire universe was doing that day, which was going to see Avatar. I went, and thought it was fine, blue, 3-D. I was remarkably unmoved by the whole thing.
I came back to my parent's house in New Jersey with my husband after, where we were staying. They were asking how was the movie, and I was giving that same review: "Fine, blue people, I was unmoved." As I was talking, my parents were talking to me, and I'm hearing a beep after everything they say. Almost like pushing a button on a cell phone. They were going, "Really, you weren't moved at all?" And I'm hearing, "Beep, beep beep beep beep." This is going on for a little while, and I ask everybody, "Are you hearing this same beeping?"
Nobody hears it, and then I very abruptly go completely deaf in my right ear.
It was a really strange feeling. I was like, "What, what?" And then I closed my left ear, and if I closed my left ear I heard nothing. I start freaking out that I've lost my hearing, on one hand. On the other hand, I have this other emotion which is: If I've gone deaf, for real, that means the last thing I've heard to its full extent was James Cameron's Avatar, and [that is so] disappointing for me.
So, I'm trying to communicate to them what's going on, and I'm really nervous, and so the next day I get an emergency doctor's appointment. I go in and the doctor tells me I have a bad ear infection and gives me very expensive antibiotics that are about thisbig, and she puts me on them, and I assume that it's going to go away.
About four days into those antibiotics I still can't hear anything, and that makes me very, very, very nervous. At this point I'm like, "Science and medicine, you'd better work." Because prayer is not an option for me. I'm not one of those people.
I'm hoping this will work, and it's not working, so I go see a second doctor, and he puts me on some steroids. After a few days on the steroids a tiny part of my hearing comes back, but with it comes a feedback in my ear that sounds like someone's constantly banging pots and pans together in my ear. That makes the subway really exciting when you're waiting.
That's what's going on, and now I start freaking out, and people start praying for me, which isn't really how I roll. People start calling me, all of my friends start calling me, because word's gotten around that I've lost my hearing. And they all start offering me medical advice, which is funny because I'm not friends with any doctors at all. They all have things to say.
One friend calls me and she goes, "I've heard you've lost your hearing, I'm so sorry to hear that. Have you tried a Q-tip?"
Another friend, who was a massage therapist and really into the mind-body connection, calls me and says, "I'm really sorry you've lost your hearing, but have you thought about how maybe you're really not happy in your life, and maybe you caused this to happen?"
Another friend, to cheer me up, sent me a book, Gray's Anatomy. For those of you unfamiliar with it, it's a book by storyteller Spalding Gray, about how he went blind for no reason in his right eye, went on a giant quest to find out why and to cure it, and ends up at the end of the book blind in his right eye with no cure and no reason why it happened, only to jump off the Staten Island Ferry ten years later and kill himself.
So that was to cheer me up.
I'm freaking out, and my mother-in-law, she used to be a nun. She hates me, to say the least, but she starts praying for me as well. At this point I'm like, the feeling is mutual, but fine, I'll take your prayers if that's what you're going to do.
But for me, I keep going to science. I go to a specialist now, because all I have is this little pot and pan thing going on in my ear. And the specialist does everything possible. He puts those suction things on my head and something happens. [I have] no idea. Blood is taken, there's an MRI. Everyone is like, "Why are you deaf?" Nobody can figure out why I've gone deaf.
Eventually after about the fifth or sixth visit with me, the specialists says, "I think you have something called Ménière's disease, which is caused by too much salt in your diet."
I thought, You know, that makes a lot of sense, because I have eaten enough salt in my life to cause myself to lose my hearing. Really, I have. I love salt. I love it. A couple weeks ago I was in the Poconos and I saw a salt lick, and I had a desire to lick it. I love salt, and I put it on everything. I thought, Yes! I have eaten enough salt to make myself go deaf. This explanation makes total sense.
So, he tells me that for a month I can eat no salt at all. If, at the end of that month, my hearing comes back, that means that I do have Ménière's disease, and we'll know how to treat it. However, I can never have salt again. Or, my hearing will not come back and I will be deaf. However, I can have salt. So it feels like a lose-lose situation for me.
So I go and I remove salt completely from my diet, which is really, really . . . I mean, you could have said remove sex, drugs, coffee, alcohol, every other vice. Anything but salt.
I'm miserable, and then the earthquake happens in Haiti. And now I'm watching the footage of Haiti and I'm a mess over these poor people losing all this stuff. And I start thinking, I can't feel bad that I've lost my hearing. This is much more serious.
So now I'm not eating salt, watching nonstop news coverage, but not allowing myself to have any emotions at all about losing my hearing because I feel terrible about the world. This is insignificant in terms of what's happening around us, so I'd better not feel bad at all. I shouldn't feel bad at all.
A month goes by over this. It's a very depressing month. It's winter, it's January. I go back to the doctor's after a month of no salt and they test my hearing. If you've ever had a hearing test it's "Beep, beep, beep." I go in, and I've issued all the beeps with this hand, again.
They tell me that I've just lost my hearing in my right ear, and I don't have Ménière's disease. The good news is I can have French fries. Ahh.
They tell me that there's a 50 percent chance that I'm going to be half deaf the rest of my life, and there's a 50 percent chance it may just come back, and there's a small chance that I might just go completely deaf. They don't know.
Then my doctor said that he's done all he could and that I couldn't come back anymore, because there was nothing else that he could do. He broke up with me. He was like, "There's nothing else I can do for you, you are a medical mystery." He sent me on my way, saying that basically I was going to be half deaf for the rest of my life.
I'm still not allowing myself to be upset, because I feel bad about the world. So, I go to Whole Foods on my way home, and I'm standing there and I go to the buffet. I get the saltiest meal: I get mac and cheese, I get fried chicken, and I put salt on it. And I go up to the register to ring it up, and as I'm standing there, there's a sign on the register and it says, "Make a donation to Haiti — five, ten dollars."
At this point, even though I have insurance, I've spent probably a couple thousand dollars on various medical things for this hearing problem in the past two months. So I'm pretty much out of cash. I look at the sign to help Haiti, and I say, "Oh, I'd like to make a donation." And the woman says, "How much?"
And I go, "Fifty dollars." And she goes, "Oh, you're a good person."
I'm standing there with my lunch and I just start weeping, at the register at Whole Foods. I'm going, "I am! I am a good person!" Suddenly I'm overcome with, "I am. Nobody is a better person. There's nothing greater a person could do than give fifty dollars to Haiti. Who's better than me? Who's greater than me? Who's more selfless?"
And I'm just standing there, weeping, thinking about what a wonderful, wonderful person I am. I do not know how much time passed, but I think it was at least a hundred and twenty seconds. Finally I look up, I'm just weeping, and the woman is just standing there with my lunch. And she just goes, "Okay." And hands it back to me.
I walk out of Whole Foods into the snowy winter day, knowing that the worst possibility has come true: The last thing I've ever heard to full capacity was Avatar.But on a positive note, I sort of reveled in the fact that my mother-in-law prayed all she could. And my fucking hearing didn't come back, and I'm like, "I'm right! You know what, I'm right!"
So, at least I have that.
Margot Leitman is a comedian and writer who recently relocated to Los Angeles. She is the co-host of the nationally touring Stripped Stories, now in its fifth year, and is a four-time Moth StorySLAM winner and a Moth GrandSLAM winner. Her stories have been featured multiple times on NPR, and she can be seen playing numerous roles on upcoming VH1 sketch show Stevie TV.
I was twenty-six the first time I visited a shrink, the practice tucked away on Manhattan's Upper East Side, a brass plate on a black door. The therapists' offices faced in toward the waiting room, each with an overstuffed couch or, in the smaller offices, a large wing chair. Huge desks barricaded the far walls, and the rooms were painted in muted primary colors.Read More
"We all have a story about science, and at The Story Collider, we want to hear those stories." That's been part of our standard blurb since our inception a year and a half ago, and it's true. We've been lucky to feature many stories. Over 150 people have told stories on our stage, and 70 of those have appeared on our podcast. But there are a lot more personal science stories out there. A lot a lot.Read More
[mp3-jplayer tracks="Narrative Medicine@http://s3.amazonaws.com/storycollider-podcast/TSCMagazine1-Narrative.mp3"] Story Collider reporter Steven Berkowitz discussed the concept of narrative medicine -- the idea that storytelling can empower patients and make medical care more effective -- with psychologist and Academy Award-nominated documentary filmmaker Dr. Murray Nossel and psychiatrist Dr. Paul Browde, who teach in Columbia University's Narrative Medicine program. Together Murray and Paul perform in their live, unscripted show Two Men Talking and founded Narativ, a company that works with people to tell their stories in group circumstances. Tune in to the audio above or read the transcript below. (Audio editing by Luke Davin.)
So can one of you please give me a basic definition of what narrative medicine is?
MURRAY: I would say that narrative medicine is a new discipline in which doctors are being trained in narrative competency as a way of better serving their patients.
PAUL: People feel fragmented in their interactions with health care providers. So what narrative medicine does is it starts to bring together all the disparate pieces, what make up a patient or a person, so that they start to see a whole.
There was something that doctors in those days in South Africa just had. It was called bedside manner, the art of connecting to the person that you are treating.
MURRAY: You know, I remember from my childhood, the doctor who arrived at my house, when I was sick as a child, with a big black bag and treated me. And there was something that doctors in those days in South Africa just had. It was called bedside manner, the art of connecting to the person that you are treating. It's not simply a scientific exchange or an exchange of expert knowledge. Something is happening between the doctor and the patient that's part of the healing process. And narrative medicine is resurrecting that art and actually codifying it as a set of practices that doctors can now learn and practice.
You both teach at Columbia University's program of narrative medicine. Can you tell me about the program?
PAUL: It's a master's program in the School of Continuing Education, and it was created by Dr. Rita Charon, and it's now in its third year. And what it aims to do is to teach people narrative competency. So a wide range of people have a wide variety of classes, ranging from straight literature classes, philosophy classes. We teach a class called co-constructing narratives, in which we work with a group of people first to tell their own story and then to collaborate to co-tell a story, as we do in Two Men Talking – which is how we were asked to teach it.
I was going to ask how you got involved in the program.
MURRAY: The Department of Narrative Medicine essentially came to see a performance of Two Men Talking. And essentially they approached us right afterwards and said, “You are practicing exactly what we are teaching. We want you to start teaching in the newly formed MSC program. And they really allowed us to create a course that would transmit what we know, through the doing of Two Men Talking and a variety of other practices, to students.
Could you tell me what Two Men Talking is?
PAUL: Two Men Talking is the performance of the friendship that Murray and I have had since we were twelve years old. It's an improvised storytelling experience that is always new. So we create it in the moment every time we perform it. And it's the story of how we met, which is that in 1974 in Johannesburg, South Africa, a teacher gave a class of twelve-year-old students an exercise on the first day of school, and Murray and I were partners in that exercise. And I told him a story, and then I said to him, “Tell me a story.”
MURRAY: And I said to Paul, “I don't have a story.”
PAUL: And I tried to encourage him.
MURRAY: And I said, “Really, I just don't have a story.” And at the time, I just couldn't tell stories out aloud. I had lots of stories in my head, but I couldn't speak them out loud because I was very shy and was very much teased at school for being a faggy sissy. That's what I was really called. But Paul was never one of the boys who would bully me or tease me for being a fag. So it was most surprising when he humiliated me in front of the whole class, for being gay essentially.
PAUL: And that was really the end of the friendship at that point. So there'd been three or four years and then we never saw each other again until we met, coincidentally, in New York City over twenty years later. And when we re-met, the first thing I did was apologize to Murray for what I'd said to him when we were sixteen – for humiliating him in front of the class. And we became friends and started recapturing our childhood and the friendship that we never had through the telling of stories.
Now Murray, you're a documentary filmmaker. Is that how you would describe yourself?
MURRAY: One of the things I do is make documentary films. That's not all that I do.
And Paul, you're a psychiatrist.
PAUL: I am.
So there's an inherent co-construction of a narrative part of your regular practice. Are there doctors, like internists, who teach at the program? Or is it mostly people who have other perspectives?
MURRAY: Rita Charon is a very renowned physician. She also has a PhD in English literature. So this is the person who actually founded narrative medicine. So she brings together those two domains very forcibly.
PAUL: Yeah, I would agree that it's not just people who are psychiatrists or in mental health, it's medical people.
But as well as people from other disciplines. You were talking about from the philosophy department, from the English department.
MURRAY: Yes, and our students in the co-constructing course have come from a wide variety of disciplines. We've had journalists, we've had architects, we've had lawyers, emergency room physicians, gynecologists, psychiatrists, pediatricians, nurses. So many different practitioners have found themselves attracted to the field of narrative medicine because it taps into something that they know from practice, but which hadn't yet been codified.
PAUL: Yeah, I think what's really fascinating about it is that it's a very new field. In itself, narrative medicine is a co-constructed narrative. It's bringing together the world of narrative and the world of medicine and seeing how they talk to one another. And so everything that's happened so far is still the beginning. And it's possible in ten, twenty years' time that this will be a word that has a meaning that people all understand. But for the moment, it's really very new. So it's an invention, and that's what makes it so exciting.
What narrative medicine recognizes is that each person is an expert in the matter of their own lives.
MURRAY: Part of what's really informed what we do is the recognition that every person has a story. There's some kind of power relationship that exists in the expert relationship. The expert has all the knowledge, and that's the doctor or physician, and the patient has no knowledge. What narrative medicine recognizes is that each person is an expert in the matter of their own lives, and that when the patient walks into the doctor's office, the patient knows a great deal and is, in fact, the expert about his or her own life. And narrative medicine is about recognizing that the patient and the doctor are both experts and what they are doing is they are co-creating, or co-exploring.
PAUL: I think the AIDS epidemic was the first time that patients became empowered with knowledge and they knew more than the doctors knew. Because, in fact, the establishment was doing so little at the beginning of the AIDS epidemic, if the patients hadn't empowered themselves and become educated, nothing would have happened. So people started really studying up. They were up on all the newest studies before doctors were. And they advocated for themselves. And doctors had to listen to patients.
MURRAY: That was my personal experience in 1994 when I went to work in an AIDS program. Patients were constantly challenging the doctors. Everything that the doctors said, the patient would say, “How do you know that? Have you read the New England Journal of Medicine? Have you seen this latest study?” It was an amazingly democratizing force.
The way you were just describing the patients going in, that seems to be an area of diagnosis where the patient has an issue, a problem, a disease and they are taken to be, by narrative medicine, the most knowledgeable about their own condition. And you encourage, if I understand correctly, the doctors to work with them to understand their story.
So how does that help in coming up with the appropriate diagnosis?
PAUL: There are multiple diagnoses that people live with. An example that I have of that is a patient who, according to the cancer specialists, is doing extremely well. So the chemotherapy that she takes has caused the cancer to go into remission, and she's doing fine. The only thing is that there's another diagnosis that the cancer specialist is missing, which is that every third week when she takes the chemotherapy she feels completely wiped out for at least a week, very nauseous and deeply unhappy. And she has been told that she has to take this chemotherapy for the rest of her life.
As a result of that particular story being missed, there really is a risk of eventually of her choosing not to take the chemotherapy unless something is done to make sure that she feels better every third week. The diagnosis is also her life and how her life feels to her. And in that domain, she's clearly the expert.
MURRAY: From a purely medical standpoint, I have a story about being a patient. And that is, I went to see a doctor, a new doctor, and I had to wait an incredibly long time to see him. I waited in a waiting room for four hours. By the time I got to see him, I was ready to wring his neck. My first session with him took one and a half hours, and he asked me questions about my entire life and he listened very attentively to everything I had to say about my life.
So one of the things he said to me was, “You grew up in South Africa, right?”
And I said, “Yes.” I mean, this is a Park Avenue doctor in New York City.
“When last did you go for a dermatological check-up?” he said. “Because you must have had a lot of sun exposure as a child.”
I said, “Well, I've never been for a dermatological check-up since I've been in the States.”
He says, “I'm making an appointment for you to go see a dermatologist in this building right now.” And off I went to see the dermatologist who found on my leg a malignant melanoma.
And if I had not been to that doctor at that particular point in time, and if he hadn't been savvy enough to put together the fact that I came from South Africa and would have had sun exposure as a child, I wouldn't be sitting here right now. So there is something about asking the right question. That doctor was sufficiently connected to me and put South Africa together with the sun exposure. And that facilitated a diagnosis which saved my life.
The thing about that particular story is you say he took an hour and a half with you. We get ten or fifteen minutes with our doctor if we're lucky and she's running tests. How in the current system of checklists and insurance payments and ticking off all of the right boxes is there space for this kind of, in a sense, slower medicine?
MURRAY: It has become a luxury. I think that, even in the current system, the idea that the listening shapes the telling is very important. So even if a doctor spends the first three minutes really connecting, I think there's much more chance that the patient will reveal the information that needs to be revealed. It is very difficult to go into a doctor who's viewing you as a checklist and is sitting and looking at their computer screen and tell them about issues that you know are bothering you.
So what you're saying is that these checklists sort of close down inquiry rather than encourage it?
MURRAY: Definitely. And I think it's why so many people choose to seek alternative practitioners, because they are not so wedded to a checklist – there's fewer prescriptions. And so people can really feel heard.
We spoke about how narrative is used in a diagnostic setting. Can you also use it, or how is it used, in a therapeutic setting?
PAUL: I mean, first of all, people being able to make a coherent narrative of their own lives is inherently healing. It helps people. So people who have dealt with trauma, one of the things that they struggle with is being able to put together all these pieces of their past. Sitting with people and being able to create a narrative gives their life a sense of coherence. Whereas before, they felt all over the place and perhaps even confused by life, suddenly life starts to have a more holistic feeling to it.
And you know, diagnoses themselves are stories. So if you look at a diagnosis and a prognosis, the prognosis you could think of as a story. And one of the things that people deal with a lot is a feeling like they have no right to challenge a prognosis when doctors really don't know how long people are going to live. So it's very important for people to be able to create their own future narrative, which then also informs how they experience life in the present. And I think doctors' understanding the stories of those patients can really help them with that.
We go to the doctor to get better, to assure ourselves that we're not sick, to have company -- and usually (shockingly often, in fact) it works brilliantly. But sometimes events don't go the way they should, the medicine doesn't quite work or it goes horribly wrong. And those are the moments that reveal more about the world and ourselves than we ever wanted to know. In the inaugural issue of The Story Collider Magazine we explore the single most common type of story we get when we ask people, "What is your experience of science?"