ALIX SPIEGEL, HOST:
Once I was sitting with a hero of mine - an older man who'd been part of the civil rights movement and helped bring health care to hundreds of poor communities but who managed all of his do-gooding with a wicked sense of humor. He was one of the most prolific and artful cussers I've ever known.
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SPIEGEL: By the time of this meeting, he was in his 90s, so he had a long list of health problems and the pains that go with them. He was talking about these problems. And they were all very serious. His back was a mess. A disc had broken loose from the pack and was bulging out so far he could hardly walk. He'd had cancer and was short a couple organs, so he carried a bag on his hip to catch his urine. But it sometimes rubbed, making even sitting uncomfortable. Also his eyes - there was a pressure on his left one. He couldn't see.
I loved this man. I'd known him since I was little. And intellectually, I could tell that he was suffering. The problem was that I had a hangnail - this tiny piece of skin about the size of a grain of rice on the outside of my ring finger. And it was actually hurting me - a sharp, stabbing sting that completely dominated my attention. I kept looking at it and the small, red patch that surrounded it. So what he was describing was muted and distant - someone talking through a wall. He had a pain. I had a pain. And what's a hangnail compared to cancer? Nothing. But it didn't matter. Pain is easy to dismiss in other people. But our own pain has a way of grabbing our attention and holding it like a vise. When pain takes us, it's hard to turn away.
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HANNA ROSIN, HOST:
Welcome to the fifth season of INVISIBILIA. I'm Hanna Rosin.
SPIEGEL: And I'm Alix Spiegel.
ROSIN: INVISIBILIA is a show about all the invisible forces that shape human behavior, our thoughts, our emotions, our expectations. And today we have a story about the complicated relationship between pain and attention. This story starts as a medical mystery, but then it becomes something else - a story not just about one person's pain but about the pain in all of us and how an obscure bureaucratic shift helped transform something as personal and intimate as our own hurt.
SPIEGEL: Stick around.
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ROSIN: OK. So Alix is going to be telling the story today. It begins in a suburban, one-story bungalow just outside Phoenix, Ariz. Just a note - because it involves minors and medical information, we're not going to use last names. Here is Alix.
SPIEGEL: There's a before, and there's an after. In the before, it was a relatively normal night, the kind of night that any 14-year-old girl might have. Devyn ate dinner and watched TV. She had small, unremarkable interactions with her family - her father, her mother. Her older sister wasn't there. Around 10, Devyn decided to turn in. In the bathroom, she brushed her teeth, applied her creams. Then she returned to her room, climbed under the covers and fell asleep.
DEVYN: Yeah. I went to bed as I normally would. And then all of the sudden, my hips, they just - they hurt unimaginably. You know, I started crying, and I started shaking.
SPIEGEL: It was around midnight, but Devyn couldn't stop herself. She cried out so loudly, she woke her mother, Sheila (ph).
DEVYN: Why is this happening? Why is this happening to me?
SPIEGEL: The pain was unbelievable, as if her hip were being branded with a hot iron from the inside. To ease it, Devyn and Sheila tried everything - standing up, lying down, hot bath, pain medication. But there was no escape, not for Devyn and so not for Sheila.
SHEILA: I - you go to cancer - right? - first - right? Everything's got to be cancer, right? So you're thinking, OK. You got cancer. Maybe there's a tumor.
SPIEGEL: When she was calm enough to reason with herself, Sheila decided that cancer was improbable. But what was going on? The only thing that they could think was that the hip pain was somehow related to the minor knee surgery Devyn had gotten a few months before. She'd broken the tip of her distal femur one day during dance practice. So Sheila did what Sheila always did. She snapped to attention to solve the problem. I mean, it was 2016. So Devyn didn't need to worry. Science could fix this.
DEVYN: We called my surgeon.
SPIEGEL: But the surgeon had no explanation for the pain. He renewed Devyn's prescription for Percocet and wrote a new script for Tramadol. But the problems continued, so Sheila lined up more appointments - Devyn's pediatrician, a naturopath, a pain specialist but also...
DEVYN: A sports medicine doctor.
SPIEGEL: The doctors made recommendations, wrote prescriptions.
SHEILA: Gabapentin, Lyrica, nortriptyline, amitriptyline, amitriptyline...
SPIEGEL: They went to doctor after doctor. And at every appointment, it was the same drill. The doctor would ask Devyn about her pain. Where was it? And what was her pain number? That is on a scale of one to 10, 10 being the worst pain she'd ever felt in her life, what number best described it? Was it a two, a three, a nine? Then the doctor would order some tests to find the pain's cause. But no matter where the doctors looked in Devyn, all they saw was a perfectly normal body.
DEVYN: You are healthy.
SHEILA: So go home.
DEVYN: Nothing is wrong.
SPIEGEL: How could this be? It made no sense. And it felt paradoxically like the more attention that they gave to the pain, the bigger the pain grew. In Devyn, it started spreading.
DEVYN: It spread from my knee down to my entire whole bottom half of my leg, to my right leg, to my right arm - my entire arm, to my shoulder, my left hand and then my whole left arm. That's how it spread to my limbs.
SPIEGEL: But it kept going. It spread to her stomach, her back. It was crazy.
DEVYN: Pain took over. Sometimes, I couldn't wear pants. I couldn't wear socks. I couldn't have the covers on my legs. Sometimes, I'd have to turn the fan off because...
SPIEGEL: The fan hurt.
DEVYN: Yes, the fan being on would hurt my leg.
SPIEGEL: Sheila was horrified that her daughter was suffering and so, so frustrated. She'd always been able to navigate Devyn's problems before. Sheila says she was never a helicopter parent, but she was quick to help. She did whatever she could to make Devyn's dreams a reality. When Devyn was little, she embraced gymnastics. But at 12, she discovered dance. And it was like a revelation. Devyn loved the way it made her feel when she moved.
DEVYN: If you think of how the water in - on the beach is constantly moving fluidly, it doesn't stop. It doesn't pause. It's just always going.
SPIEGEL: At 13, Devyn made it into a competitive dance troupe that practiced every day after school for four hours, and things got really serious. Once a month, Devyn and Sheila would load a pile of spandex costumes into the backseat of Sheila's car and drive to tournaments. In fact, in Sheila's closet, there's a complete archive of Devyn's competition wear sheathed in protective plastic, proof both of the intensity of Devyn's commitment to dance and of Sheila's commitment to Devyn. The day we visited, I asked Sheila to bring them out for us.
DEVYN: Some of them I didn't even get to use.
SPIEGEL: You didn't need to bring out every one.
SPIEGEL: Can you show us...
Devyn and her mom walked us through the many rhinestone outfits, each a small, bedazzled time capsule.
SHEILA: This was, like, the first one you ever had.
DEVYN: That was the first costume I ever had.
SPIEGEL: Devyn and Sheila have an easy, "Gilmore Girl"-ish (ph) rapport, the kind of intimacy where Devyn's free to let the sound of an eye roll creep into her voice.
DEVYN: That one is "Kill The Lights" - Britney Spears.
SHEILA: Sexy, little one.
DEVYN: That's not what we were going for, mom.
SPIEGEL: But after the pain hit, the basic day to day of their relationship shifted. There were no more costumes, no more long drives to tournaments. Devyn had to drop dance. Pain was the focus now. It came to completely dominate their attention, both Sheila and Devyn.
DEVYN: I was constantly thinking, how is my back feeling? How is my other leg feeling? You know, how is the part that it just spread to? How is it feeling? And how am I going to handle if it spreads further?
SPIEGEL: Sheila says once Devyn started deteriorating, she was hit by an instinctive protectiveness that destabilized her as a parent. Devyn started saying that she couldn't go to school. Sometimes, she wouldn't even leave her room. And Sheila felt uncertain about how tough love-ish (ph) she should be. Devyn's sleep patterns, her work patterns, her whole life became more and more irregular and dysfunctional. But even though Sheila is so organized and efficient that she has every medical record for every person in her family chronologically arranged in three-ring binders, she didn't demand that her daughter just push through and live a more ordered existence. Instead, Sheila found herself quietly creeping up to Devyn's room in the morning.
SHEILA: You'd listen at the door. And, you know, this is probably my bad, too. It's 'cause everybody told us, you've got to get her on a normal schedule. But when she's up vomiting all night or in pain all night and not sleeping, like, the last thing you want to do is wake her up when she's asleep. That's where you're like, OK. The tough love - come on, honey. Let's get up and do something today, or I know your eyes are miserable. And if you walk out here, you're going to have a major headache. You know, stay in bed.
SPIEGEL: Devyn withdrew from her public high school because there were days when her body was throbbing so much she could hardly leave her room. In fact, Devyn stopped going out even to short, social events with family and friends because if someone bumped her or tried to shake her hand, her pain would flare. And she'd feel like going home. Their lives had become so unrecognizable, so strange that the natural next step happened. They and the people around them began to actually question their sanity.
SHEILA: I do remember one time when we were sitting in the doctor, and they'd basically just said, you know, you need to work really hard on your psychology. And she looked at me, and she's like, am I crazy? Do you think I'm crazy? And I thought, maybe I'm crazy, you know? (Laughter) So I'm like I don't think you're crazy. But maybe we're both crazy.
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SPIEGEL: But here's the thing. They weren't the only ones who were facing this problem. There were lots of teens like Devyn. According to pain specialists - and these are admittedly rough estimates - thousands of smart and high-achieving girls had been struck down by this kind of mysterious pain that grew and grew, jumping from one part of their body to the next. Personally, I'd spoken to nearly a dozen.
UNIDENTIFIED PERSON #1: It just felt like I was being stabbed.
UNIDENTIFIED PERSON #2: Ten out of 10 pain.
UNIDENTIFIED PERSON #3: It hurt everywhere.
UNIDENTIFIED PERSON #1: Sharp, sudden pain.
UNIDENTIFIED PERSON #4: Pain started spreading.
UNIDENTIFIED PERSON #5: Left wrist to the left knee.
UNIDENTIFIED PERSON #6: Test after test...
UNIDENTIFIED PERSON #5: You're fine. You're faking it. You want attention.
UNIDENTIFIED PERSON #4: Doctor to doctor.
UNIDENTIFIED PERSON #6: It's all in my head.
UNIDENTIFIED PERSON #5: You want it.
UNIDENTIFIED PERSON #7: Gabapentin, hydrocodone, really, really intense pain meds.
UNIDENTIFIED PERSON #1: Sharp.
UNIDENTIFIED PERSON #5: Fine.
UNIDENTIFIED PERSON #2: Pain.
UNIDENTIFIED PERSON #5: Fine.
UNIDENTIFIED PERSON #1: Pain.
UNIDENTIFIED PERSON #4: Pain.
UNIDENTIFIED PEOPLE: Pain.
UNIDENTIFIED PERSON #8: It just was very confusing.
SPIEGEL: How do you explain all of this pain? And why was the pain affecting so many people? It felt like a really big and complicated problem. I couldn't help but think that the reason it was happening must be big and complicated, too.
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SPIEGEL: INVISIBILIA will be back in a minute.
ROSIN: Welcome back. This is INVISIBILIA. Alix now continues her story about pain. Starting last summer, Alix talked to dozens of girls who, just like Devyn, were racked with pain, and nobody had any idea why. So Alix went on a quest to figure out what was happening to them.
SPIEGEL: How do you explain an epidemic of pain? You can say that the problems are physical, and they are. You can say that the problems are psychological, and they are. But I think if you want to understand what's happening to these girls, you need to look at the water that they swim in, the peculiar structure of the culture that raised them. And to understand that, you need to go back long before they were born to a doctor you've probably never heard of named James Campbell.
JAMES CAMPBELL: I don't recall one lecture about the field of pain in my medical school. Pain was off-topic.
SPIEGEL: James Campbell, the gifted son of a Midwestern electrician, went to medical school in the 1970s when pain was seen as almost irrelevant to the task of being a doctor. Pain was a symptom, not an actual problem. In fact, doctors were taught to be suspicious of people who complained about high amounts of pain.
CAMPBELL: Medical trainees - we learned terrible attitudes about patients. Patients were referred to as pain turkeys. So a pain turkey is someone who complains about a lot of pain. It was thought not to be legitimate.
SPIEGEL: But Dr. Campbell felt this attitude towards pain was wrong. In his practice, he would see patients so crippled by back pain they were unable to leave their house to make a living, cancer patients so shrunken in agony they were unable to engage with their families. And it really bothered him. He thought it was a problem that doctors didn't pay more attention to pain. Why wouldn't they take it more seriously?
KEITH WAILOO: There is a history of regarding pain as predictable and expected, as part of life.
SPIEGEL: This is a medical historian from Princeton named Keith Wailoo, and he says this idea that pain was normal started falling out of fashion in the '50s and '60s. See. There was serious political change, the civil rights movement and women's lib - a small but growing sense that society needed to think more seriously about all kinds of experiences that it never took seriously before. And as part of that, America moved from an emotional culture where the norm was to push down and hide feelings of pain because they were seen as shameful to a culture where traditionally disenfranchised people like people of color and women were more empowered to speak about their hurt. Victims of sexual assault and prejudice came forward, publicly claimed the story of their struggle and were celebrated as brave.
So the idea that pain was something to acknowledge, explore and actively address was growing. The problem in terms of taking physical pain seriously in a medical context was that, traditionally, medicine only focused on things it could measure, like blood pressure or temperature. For doctors, if you couldn't measure it, how did you know that it was real?
WAILOO: So it's in this time period that you have the invention of that questionnaire that we all have probably heard at some point or another when we go to the doctor, right? On a scale of one to 10, 10 being the worst pain that you've ever had, how would you rate your pain right now?
SPIEGEL: With this simple questionnaire, pain suddenly became a thing that you could count, like white blood cells. But even the pain scale didn't do a ton to improve the treatment or status of pain in the medical world. And Dr. Campbell and the doctors and nurses who agreed with him felt incredibly frustrated until one day in 1995, when James Campbell stepped into his bathroom.
CAMPBELL: I think, literally, I was in the shower on a Sunday morning, and the idea of pain, the fifth vital sign, popped into my head.
SPIEGEL: Pain - the fifth vital sign. Vital signs are the rock stars of the medical world. They're the critical measures that everyone agrees deserve star treatment because they're essential to life. And until the morning James Campbell stepped into a shower, for hundreds of years, there had only been four.
CAMPBELL: Blood pressure and then pulse, temperature and breathing. Those things are always going to be done every time, every medical encounter.
SPIEGEL: So if Dr. Campbell could get pain established as the fifth vital sign, pain would go from being a D-list celebrity to basically Beyonce. The only potential problem with this plan is that pain is not - at least, usually - an indication that there is something immediate and life-threatening happening. And Dr. Campbell knew it.
CAMPBELL: Well, strictly speaking, pain wouldn't be a vital sign because a vital sign would be a manifestation of the physiological functioning in the body that's vital to life. So it's vital in the sense of being associated with being alive.
SPIEGEL: But Dr. Campbell still thought elevating the status of pain would do more good than harm. And since, in 1995, he was president of a medical organization called the American Pain Society, he used his presidential address to launch a campaign, and the idea caught fire. Over the next few years, lots of groups made pain a priority. The Veterans Health Administration put out a toolkit for doctors that emphasized pain as the fifth vital sign. The Federation of State Medical Boards encouraged doctors to systematically measure patient pain. And importantly, JCAHO, the main organization that offers accreditation to hospitals, published a document that emphasized the importance of assessing and treating patient pain. Dr. Campbell had helped to launch a revolution. It's just like a genius marketing move.
CAMPBELL: It was really amazing because it transformed medicine.
SPIEGEL: But not in a purely positive way. Some people now argue that this small bureaucratic shift in medical practice and the way that it taught doctors and patients to see pain as a critical problem to be solved led ultimately to the opioid epidemic. After all, when doctors are expected to ask about pain, it's hard not to give medications if a patient reports a high score. And several drug companies that made pain pills were quietly funding these initiatives. In fact, Dr. Campbell set up a pain awareness group that got a decade of financial backing from Purdue Pharma, the maker of OxyContin. In congressional hearings on the opioid crisis, Dr. Campbell called the support, quote, "generous," though the pain group's chief executive later added that funders do not influence its work.
What is beyond debate, however, is that conceiving of pain as the fifth vital sign and asking patients about their pain number meant that pain got a lot more attention than it ever had before. And here's the thing about attention that most of us don't fully appreciate. Attention is not a neutral force. It invariably changes the thing that it purports to observe. Often, it makes that thing bigger. Attention can change all kinds of things, even the physical response of the body - which brings us back to Devyn and her pain.
DEVYN: Am I going to have to live with this the rest of my life? And if I do, then how am I going to cope with it?
SPIEGEL: For a patient, there's almost nothing more difficult than chronic pain, the way it infects every moment. Sheila and Devyn couldn't find a way forward until, finally, a specialist that they went to gave Devyn's symptoms a name. He said Devyn had something which is often referred to as amplified pain. Now, the normal purpose of pain is to act as a warning sign. It tells you to take your hand off the stove. But Devyn's brain and nervous system had gone haywire and were seeing threats everywhere, so even normal stimuli like the breeze from a fan, was amplified and interpreted by her brain as an attack. That's why she was feeling pain, even though no test saw any problem. Her brain was stuck on the wrong setting and couldn't stop paying attention. Devyn remembers coming home from the doctor and getting on her computer to research amplified pain.
DEVYN: The very first video I clicked on, it was a girl probably around my age, and she could not function at all. She had cabinets full of prescription medication, and there was this one part where she was outside, and she was in a wheelchair, and a mosquito bit her. And she cried like she just got stabbed in the leg. That's how severe her pain was. And yeah, that was definitely, like, a realization point for me. It was a lot to swallow.
SPIEGEL: Devyn eventually found an online support group for girls like her with chronic pain and, like a lot of people these days, found incredible solace in a community of people facing the same set of problems. As the months wore on, she spent more and more time online talking to them. For her part, Sheila was glad to have a diagnosis and also glad that Devyn had found comfort in a new community. But sometimes, in a dark corner of her mind, she privately worried - was her daughter's identity being built around being sick? Was that good?
SHEILA: You know, she's gone from dancer to performer to sick girl because right now all of her friends are kids with chronic pain.
SPIEGEL: What Sheila wanted was a laser focus on getting rid of the pain and back to normal life. And after a bunch of phone calls, she found a promising treatment created by a doctor named David Sherry. Dr. Sherry had gray hair long enough to gather in a ponytail, a massive number of aggressively playful ties and a very unconventional/somewhat alarming attitude towards pain. I went to see Dr. Sherry. And during our first conversation, he held up his hand right in front of my face and wiggled half an index finger at me.
DAVID SHERRY: I was trying to fix my snowblower. It wasn't working right. And I put my hand in one place, the wrong place for one millisecond and the chute just snapped me in and whacked off my finger a little bit. Went to the emergency department. They said, oh, give him some morphine before - I was sitting down, just trying to check in, and they tried to take me back. And I said, wait. What's my pain number? My pain number is zero. I had no pain whatsoever. Five hours later, I still had no pain.
SPIEGEL: Wait a second. Wait a second. So yes, you have - your index finger is half a finger, right?
SHERRY: Yeah. (Inaudible) Well, yeah, right about half a finger.
SPIEGEL: And you're saying that you literally did not feel pain when that happened.
SHERRY: No. I was a little bit annoyed with myself, but I didn't have any pain. I had zero pain. They come in, and they always ask you your stupid pain number. You know, I like to - about pi (laughter). You know, e - it's down to e, if they know what e is - 2.71.
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SPIEGEL: One view of the snowblower story is that it's like something a cult leader might say - a version of, I walked on water, or I once fasted for three months. But Dr. Sherry is a well-respected guy with a well-respected mainstream job. He's a pediatric rheumatologist at Children's Hospital of Philadelphia. Though, to be honest, some of the thoughts in his head are not particularly mainstream, like what Dr. Sherry thinks of the change that James Campbell helped engineer. To him, it's really not helpful.
SHERRY: How's your pain? How's your pain? How's your pain? So we're focusing on your pain all the time. And if they have no pain, you still have to be asked, and they have to say zero. Are you sure? Isn't that a little bit of pain I see there (laughter), you know? Come on. Have a little bit of pain for me.
SPIEGEL: But after I got over the oddness of the finger story, I came up with a more generous understanding of Dr. Sherry, which is that Dr. Sherry is just in the wrong generation. His attitude towards pain is way more 1950 than 2019. In terms of pain, he's exactly like the old-school medical establishment James Campbell set out to change - that whole no-coddling, pain-ignoring, buck-it-up generation. And in a theoretical way, I could see a lot of merit in Dr. Sherry's overall philosophy, which is that pain is not usually an emergency like low blood pressure or an erratic heartbeat. It's an inevitable part of life.
SHERRY: I think it is the lot of all mankind to - and womankind to suffer. I think that that's just part of being human. I think there's some suffering that people just need to live through.
SPIEGEL: The thing is Dr. Sherry pushes this very reasonable position to an extreme. See. He deeply believes that the way that we now ask about pain and treat it like an emergency instead of like a normal, predictable part of life - that's led to more pain in our society, more doctors confronted with kids like Devyn, more adults complaining of chronic pain because, as he tells me over and over again, the more attention you pay to something, the bigger it becomes.
SPIEGEL: So Dr. Sherry says to help kids like Devyn, we need to make all of the Devyns much more like Dr. Sherrys. Basically, we need to stop paying so much attention to pain, which brings me to the treatment that Dr. Sherry has concocted for kids like Devyn.
SHERRY: Put them in pain to get them better.
SPIEGEL: Put them in pain to make them better. Force the kids to push their bodies until they are in tons of pain because if you can put them in pain for long enough, over time, they can learn to ignore and work through it. That's Dr. Sherry's idea, though that hasn't been backed up by double-blind studies, which is an important way that researchers prove something works. Still, it was enough for Devyn and Sheila.
DEVYN: He's definitely a little crazy. But anybody treating and doing research on this disease has to be crazy and out of the box.
SPIEGEL: After hearing about Dr. Sherry, Sheila and Devyn flew to Philadelphia to meet with him and became convinced that they should try his approach. Actually, it was kind of their last resort. Unfortunately, because of scheduling, Devyn wasn't able to go to Dr. Sherry's program at Children's Hospital in Philadelphia. But one of his former students, a rheumatologist named Cara Hoffart, had set up a similar program at Children's Mercy Hospital in Kansas City, Mo. So they decided to go there. My producer and I went to visit Sheila and Devyn the night before they were scheduled to leave. Their plan was to wake up at 5 and start driving. Devyn was a complicated tangle of optimism and fear. She really wanted to do the program but was worried it might reinjure her knee. She'd done physical therapy a few months earlier and had rebroken the knee that she thought got the amplified pain started in the first place. And physically, Devyn had gone into a downward spiral.
DEVYN: Yeah. I'm clearly - I'm very worried about being injured. I just - I don't think that my body could really handle it if it were injured again and if I needed another surgery.
SPIEGEL: But the alternative - not going to the program - was equally unattractive. The disruption of her nervous system caused by amplified pain was still spreading, affecting so many parts of her body. The nerves in her stomach had gotten so frayed, she couldn't keep food down and at one point was given a feeding tube. Her nervous system's regulation of her heart had also become an issue, so she'd had to get a heart monitor. It was terrifying.
DEVYN: I'm in a dangerous place. I mean, my stomach isn't working, and my heart is malfunctioning. And now my pupils are kind of not working as well as they should be, and I'm losing my eyesight and things like that. So I think that the trade-off of possibly being injured again to not getting better from this disease - it's clear that I need to go to the program.
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SPIEGEL: The question, though, was whether it would work. Could the program teach a 16-year-old girl steeped in the emotional culture of 2019 to ignore her pain like someone from a much earlier generation - someone with a mindset from the 1950s? Can you turn back the clock and reinstate an earlier emotional culture? And should you?
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ROSIN: INVISIBILIA will be back in a minute.
Welcome back to INVISIBILIA. Today, we're looking at pain. We found this very unusual program that was created to treat kids who have amplified pain, and Alix and producer Cara Tallo followed Devyn and her mother, Sheila, there to document their experience. So on the first day, they checked into Children's Mercy Hospital in Kansas City, Mo. They were led to a small room where a doctor named Emily Fox sat down to explain the program and its rules. There were a lot of rules, and some of them sounded very, very strange to Alix.
SPIEGEL: Dr. Fox was clear right from the start. They were going to put Devin in as much pain as they possibly could.
EMILY FOX: This may be one of the hardest things you do physically in your life.
SPIEGEL: Devyn will be forced to do intense physical workouts five to six hours a day. So it was absolutely going to hurt. But guess what? They weren't going to talk about the hurt.
FOX: The focus is not on pain in the program. Therapists are going to ask you, are things easy, medium or hard?
SPIEGEL: Easy, medium or hard - a bland, neutral language necessary because the whole point of the treatment was to draw attention away from pain. So Devyn her mother - who, by the way, was not allowed anywhere near the gym - even the physical therapist charged with putting Devyn in as much pain as they possibly could should avoid speaking the word pain out loud.
SPIEGEL: P.S. - pain medication - in fact, even medication for apparently unrelated problems like nausea - it shouldn't be used. Nothing to mask the hurt - Devyn had to experience it straight-up. Dr. Fox looked at Devyn and her mom with eyes that were serious and sympathetic but firm. If Devyn followed these rules nine hours a day, five days a week for three to six weeks, she thought Devin's pain would ease. But it wasn't going to be easy. Pain was how Devin would be cured of her pain.
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SPIEGEL: The program begins at 7:30 the next morning with an hour of exercise at the small hospital pool. There are two other girls in the program with Devyn, and they're all standing in their bathing suits, looking vulnerable and uncomfortable. I am uncomfortable, too, because the air in the pool room is insanely hot. But I know that the girls have it worse. Because of their amplified pain, their skin is so sensitive that even a cool, light breeze can feel like someone is holding fire to their body. Sadly, the water sloshing below them is even hotter than the air - 96 degrees. And the physical therapist running the session wants them in it now.
UNIDENTIFIED PHYSICAL THERAPIST #1: Ready, set, go.
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SPIEGEL: So begins what I come to think of as the daily ballet of beautiful suffering. They start with laps. And I can see right away that Devin feels faint from the temperature. Her eyes are at half-mast. But it just gets worse. The physical therapist brings out a stopwatch.
UNIDENTIFIED PHYSICAL THERAPIST #1: Next, what you're going to do for, like, agility is get out of the pool and jump back in as fast as you can. It's just how many you can get up and out in an amount of time, OK?
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SPIEGEL: Right away, the girls jump feet-first into the pool. And then they continue. You jump in the pool, turn back to the edge, pull the full weight of your body up by your arms. You jump in the pool, turn back to the edge and pull the full weight of your body up by your arms.
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SPIEGEL: It goes on for five minutes. And to me, it looks like straight-up torture - girls straining over and over to pull the weight of their bodies up from the water. One of the girls has lost the use of one side of her body, which sometimes happens in amplified pain because the brain freaks out and completely shuts down the part of the body that hurts the most. So for her, it's especially hard. She's mostly using her good arm, but still tries to throw her other elbow over the edge of the pool to help, only it keeps on slipping. I watch them from the sidelines and feel a little creepy, like I'm watching "The Handmaid's Tale," only I'm somehow inside the television. I honestly don't think I could do what they're doing.
After swimming, it's down to the gym for Devyn's first full day of exercise. Because of her pain, Devyn's not in great shape. But the physical therapist she's working with, a woman with military firmness, doesn't really seem ready to grade on a curve. She tells Devyn her first activity is to stand 9 inches from a wall, which has a line of Post-it notes taped about a foot above Devyn's arms, and jump until she touches the Post-its with her fingers.
UNIDENTIFIED PHYSICAL THERAPIST #2: By hitting both hands simultaneously on that Post-it.
SPIEGEL: Devyn starts out fine, but about 30 seconds in, she starts having an asthma attack. Her breath gets more and more labored until she's gasping, struggling to get the air she needs.
UNIDENTIFIED PHYSICAL THERAPIST #2: Ten seconds - you got it, Devyn. Push, girl. Push yourself. Come on, girl. Breathing, remember - good.
DEVYN: This might be an inhaler moment.
SPIEGEL: Devyn wants her inhaler, but the therapist tells her that actually, this isn't an inhaler moment. Inhalers are medicine and therefore discouraged. The therapist tells Devyn to just walk around the gym and calm herself down. Devyn does take a lap. Then she does timed frog hops around the gym, after which she realizes that her nose is bleeding.
Your nose is bleeding.
DEVYN: Yeah, it happens sometimes, but not often. It's not very bad right now.
UNIDENTIFIED PHYSICAL THERAPIST #2: OK. Let's get wiped, and let's get going. We got to...
SPIEGEL: The physical therapist can see Devyn's nose, but everything in her manner suggests she doesn't think it merits attention.
UNIDENTIFIED PHYSICAL THERAPIST #2: Sometimes if we have to, we'll just put some tissue up there and just keep moving, you know? We don't want it to get in our way. We're just moving on. Let's go ahead and get in a square for this next one.
SPIEGEL: And again, Devyn does push on. In fact, through it all, Devyn's attitude never seems to waver from a cheerful can-do. I see her willing herself there, her face a perfect mask of, yes I can, yes I can, yes I can.
UNIDENTIFIED PHYSICAL THERAPIST #2: Thirty - last ten, nine, eight, seven, six, five...
(SOUNDBITE OF MUSIC)
SPIEGEL: Look at how cute and happy your baby looks.
CARA HOFFART: He's a pretty happy...
SPIEGEL: The next day, I meet the doctor behind the Kansas City program, Cara Hoffart. Her dark wood desk is covered with pictures of her small child. My goal is to talk to her about the severe medication restrictions at the program, which seem really radical to me. Dr. Hoffart tells me that as far as she can tell, there are only two other pain programs in the U.S. that refuse to bridge pain with medications. But she says she thinks that for amplified pain, meds really are sabotaging.
HOFFART: I am asking a teenager to do an incredibly complex, challenging, hard treatment approach. And most of my patients will tell you this is their last-ditch effort. Like, this is their last resort. And if they still are holding out that maybe some medication is going to save them or fix this, it's really hard to give your all to something that sounds so hard and challenging. And so you kind of have to be all-in.
SPIEGEL: See, on a biological level, what the program is doing is slowly, laboriously retraining the brain. That's why the children have to be in so much pain for so long. Because of their past behaviors, Dr. Hoffart tells me, their brains have been trained in the wrong way. She gives the example of walking.
HOFFART: Generally, walking is not a dangerous thing to do. But for these kids, walking hurts a lot. So then you quit walking because of the pain. Your nerves just heard from you that walking is dangerous because you stopped. So next time that you start walking, they'll remember that. They'll send that pain signal even stronger and louder than they did before. You actually just empowered them to send more pain signals.
Alternatively, if you start walking and it hurts a lot and you're like, oh, my gosh. This is my amplified pain. I know what this is, so I know I need to keep walking. And it's not dangerous, but it does hurt. If you keep walking, your nerves are essentially getting the message of, well, she's still walking. This must not be dangerous. Why are we firing? And they will actually, as I tell my kids, get bored and give up and stop firing.
SPIEGEL: So that's what they're trying to do - bore the brain into submission. That's also why they avoid the word pain - because when a kid is asked about their pain, the brain has to take an inventory, run through the body, checking. And that refreshes all the nerve connections. But boring a brain is a big job, so they can't just work on the kids. They need the whole world around the kid to change, too, which is why they also work on the parents.
DUSTIN WALLACE: So today I wanted to think about one of the key parts of treating amplified pain in general, which is helping pain to be less dangerous to kids' brains.
SPIEGEL: It's 10 a.m. on Friday morning, and Sheila and two other parents are sitting at a table with Dustin Wallace, the program's lead psychologist. Dr. Wallace is a thin man with kind eyes, and he has a very clear message for the parents. Once they go home, they need to avoid the topic of pain - with their kids, absolutely, but even with their adult friends and family outside the home. At first, I can't understand this. But then he explains it's because of attention - the way it moves through systems of people, infecting everyone and changing how they act.
WALLACE: At the same time, the people that are in your lives are often - or in your kids' lives - they're parents of your kids' friends. They're your kids' relatives. They're in your town or in your network. And so you don't want them to then be seeing your kid through this lens because it's going to color their behavior.
SPIEGEL: To me, that seems kind of harsh. I think it would be incredibly isolating to not be able to talk to friends about something so central. But later, when I catch up with Sheila to see how she feels about the things Dr. Wallace said, I can see that she's really taking it seriously, chewing over how she should be as a parent.
SHEILA: I think as a parent, you always teeter on the edge of, you know, am I enabling or supporting? So I just...
SPIEGEL: What do you mean?
SHEILA: Well, like, letting her sleep in or...
SPIEGEL: It felt to me like Sheila was deciding that some of the hard choices she made weren't necessarily the best ones, with the not forcing Devyn to keep a strict schedule and get up every morning to be at school. We were talking about this, and then Sheila, this kind, amazingly organized, on-top-of-everything mom, just started crying.
SHEILA: I - just part of me, though, wishes that Devyn had had some kind of a normal high school experience. Her sister had a fabulous one. Devyn's not known any of that. It was misery for Devyn. It's misery for a lot of kids. And I think I tried to protect her from that for a long time and, apparently, not successfully. But maybe that was a bad thing. I don't know. But...
SPIEGEL: It seemed like Sheila had concluded that this generational cure Dr. Sherry had designed - his pain is inevitable, we just need to soldier on treatment - was exactly what Devin needed. And I've got to admit I was warming up to the idea of the grin-and-bear-it approach, too, until one day in the gym when it suddenly hit me how wrong I'd been - how completely I'd misunderstood the program and what it was trying to do. This wasn't just about teaching the girls to adopt the emotional norms of an earlier era. There was something much more modern going on, as well.
UNIDENTIFIED PHYSICAL THERAPIST #2: Ready, set, go. Good, good, good. Go, go, go.
SPIEGEL: It happened when I was watching Devyn run through timed activities. There was this thing that I kept noticing before and after Devin tried to improve how fast she could, say, frog-hop around two cones. Whatever physical trainer she was working with would pause and ask her to give them a word about the emotion she was feeling.
UNIDENTIFIED PHYSICAL THERAPIST #3: ...Do this, how are you feeling about the frog? What emotion are you having?
DEVYN: I'm excited to max out, but I'm also nervous if I don't max out (laughter).
UNIDENTIFIED PHYSICAL THERAPIST #3: Yeah? So some, like, hopeful, nervous...
UNIDENTIFIED PHYSICAL THERAPIST #3: Good.
SPIEGEL: It happened over and over. Devyn might fail to meet her time. But before making her repeat it, the trainer would turn and ask, how do you feel about that failure? What's the emotion you're having?
DEVYN: Disappointing. But I'm ready to do it again.
SPIEGEL: I got the sense there was no right answer or wrong answer. They just wanted a word.
DEVYN: Anxious. Happy. Frightened. Ecstatic.
SPIEGEL: There were other prompts, too, like the forms at the trainer table where the girls were supposed to write down their feelings.
DEVYN: Can I write an emotion? I want to write an emotion.
UNIDENTIFIED PHYSICAL THERAPIST #3: Please do.
SPIEGEL: At first, I didn't understand. Exploring emotions seems like the opposite of the grin-and-bear-it cure. Expressing your emotions is quintessential 2019. Wasn't the point to go back?
WALLACE: We can't go back. We shouldn't go back.
SPIEGEL: I was so confused. I went to see the program's main psychologist, Dustin Wallace, again. He told me on the one hand, it's true. This program is premised on the idea that there are problems associated with the intense attention to pain since it's the fifth vital sign world that we now live in. But the answer, Dr. Wallace says, isn't to reinstate emotional repression.
WALLACE: A return to an old culture is impossible because today is completely different. Trying to manage the stresses of today with a 1950s mindset is not the right way to go about this. I don't even know that it worked well in the 1950s.
SPIEGEL: When you're unable to name and think about your emotions and don't have the tools to diffuse them, whatever stress you experience is directed at and absorbed by the body. That's an important part of the problem with these girls, Dr. Wallace says. They're not in touch with their feelings. They just plaster on what the program calls an I'm fine face, so their nervous systems go haywire because they don't have the incredibly sophisticated emotional skills that they need to manage in an increasingly stressful world.
WALLACE: What the world expects today of everybody but, in particular, coming down to our kids is so much greater, so much faster, so much more all day long that they are facing far more stress, more hours of the day and the impression of greater consequences probably to an extent that's not healthy.
SPIEGEL: So many parents feel the need to step in and help.
WALLACE: By advocating better for their kids, by getting in there when things are stressful for their kids and by, you know, helicopter parenting more than they had in the past because their kids need it.
SPIEGEL: Which, in turn, makes the kids less resilient because they have less experience navigating complex emotional situations. Which brings us back to the treatment - the questions and forms in the gym - all attempts to make the kids more aware of their emotions. But they also teach breathing exercises, give the girls individual and group therapy. As Dr. Wallace told me about all of this, it made me think about the way that American culture typically talks about the kids we're raising today.
There are two opposite narratives.
SPIEGEL: One is we're raising a bunch of orchids and snowflakes who are not sufficiently exposed to...
WALLACE: Overly protected. They're overly cultivated.
SPIEGEL: And then the other narrative, which is the opposite narrative, is essentially we're putting too much stress on them; they're totally overwhelmed; our expectations are way too high. It's - there are these two totally separate, contradictory narratives.
WALLACE: And it's not because there's two different cultures happening. Like, these are two narratives about the exact same people.
(SOUNDBITE OF MUSIC)
WALLACE: We can't say like, oh, well these people are too protective, and these people are not. It's not. It's the same people. Both can be true.
(SOUNDBITE OF MUSIC)
SPIEGEL: So the answer isn't to go back. The answer this treatment proposes is to borrow the best from both emotional cultures - the ability to explore and manage the thoughts and emotions that you need to struggle with paired with the capacity to ignore the thoughts and feelings that will make the bad things in your life grow. Those you sometimes just need to push away. The program was teaching two contradictory approaches. The trick was to know when to use them.
UNIDENTIFIED PERSON #1: How are you feeling this morning?
DEVYN: Nauseous, a little sore. OK, a lot sore. Yeah, last night, I wasn't very hungry. But I did make some legendary ramen. And instead of water, I used chicken broth. I know. It's like "MasterChef: Hospital Edition" (ph).
SPIEGEL: The days had been crawling by, a long parade of pain and suffering. And I could see as time passed that Devyn was making a lot of physical progress. In terms of her body, she was really on track. But Devyn's chipper I'm-fine face never seemed to waver. And Dr. Wallace and the other therapists at the program talked about it during their medical check-ins. They knew it wasn't healthy that she wasn't yet able to drop her facade. Then one day, Devyn stepped onto one of the gym's treadmills for a 15-minute jog.
UNIDENTIFIED PERSON #2: Does that feel like a good pace?
UNIDENTIFIED PERSON #2: Yeah.
SPIEGEL: As always, Devyn starts out fine. But about two minutes in, even though I knew that, physically, she'd done way harder things, her breathing got heavy.
SPIEGEL: I can't understand why she would be struggling until suddenly I realize she's breathing this way because of what she's feeling. There are tears in her eyes. She's running, and there's tears. And she's still running.
UNIDENTIFIED PERSON #3: You're almost half - over half way done.
SPIEGEL: It's exactly what Dr. Wallace and the other people working with Devyn have been hoping for. Devyn's finally allowing herself to feel and show the emotion that she needs to feel and show. But at the same time, she doesn't stop. Her feet continue their pounding.
(SOUNDBITE OF MUSIC)
SPIEGEL: After Devyn makes it all the way through, her physical therapist stops the machine and asks Devyn what she always asks.
UNIDENTIFIED PERSON #4: Was it easy, medium, hard?
SPIEGEL: Devyn just stands there unable to talk. Then, suddenly, she rushes to a trash can across the room.
UNIDENTIFIED PERSON #5: That would be hard (laughter).
UNIDENTIFIED PERSON #6: I'm going to go with hard.
DEVYN: (Vomiting). Yep, it was hard.
SPIEGEL: No one steps in to help her or gives an empathetic glance. It's the opposite. One trainer is annoyed that Devyn decided to throw up in the garbage instead of using one of the special puke bags strategically placed at various points throughout the gym expressly for that purpose.
UNIDENTIFIED PERSON #7: Get a MSS basin, please, so we can dump it down the toilet because I really...
UNIDENTIFIED PERSON #7: ...Don't want to smell that all day long.
(SOUNDBITE OF MUSIC)
SPIEGEL: It occurs to me as I watched Devyn turn to the next activity that this whole treadmill episode is a kind of miniature version of how they want Devyn to be once she's back in the real world. They want her to be able to feel her feelings about the things that trouble her. Then they want her to just push on.
(SOUNDBITE OF MUSIC)
SPIEGEL: About a week later, it's the last day of Devyn's program. And everyone gathers in the gym so Dr. Fox can hand Devyn a certificate of completion.
EMILY FOX: Suitable for framing.
DEVYN: Oh, it is.
FOX: Your very own RAPS certificate.
DEVYN: It'll go right next to, like, my high school graduation and, like, my college graduation.
SPIEGEL: Just before she leaves, Dr. Fox asks Devyn her official pain score so she can put the closing number on Devyn's chart. And Devyn answers six. In other words, Devyn was still in a lot of pain, but that was apparently normal. Dr. Fox told Devyn that if she kept up all of her exercises, did her breathing, kept pushing through, the pain should dramatically diminish within a year. So that was the hope as Devyn and Sheila waved goodbye and loaded themselves into the car to drive away.
DEVYN: Bye, Abby. I love you.
ABBY: Bye. Love you, too.
SHEILA: Bye, Abby. Take care. Take care, everybody.
DEVYN: I'll call you, like, every hour for the rest of my life.
SHEILA: No, you won't.
SPIEGEL: Watching them say their goodbyes, I found myself wondering, was this a success? I wasn't sure, and neither was Sheila. The week before, she'd asked Dr. Wallace to keep Devyn at the program longer. Devyn had only been there for three weeks. And Sheila wanted more.
SHEILA: I just - I don't see her continuing this back home yet. I don't feel like it cemented in enough.
SPIEGEL: I could see what she was saying. I didn't know what to think either as I saw them drive off. But about a month after the program ended, I heard the ping of a text and looked down to see Devyn's name. When we talked, she told me that she had been doing her exercises just like she was supposed to. And her pain had gone down a lot. Some days it was at zero - not every day. In fact, some days she couldn't dance at all, but sometimes. And the text was a video she wanted me to watch. It was of Devyn dancing.
(SOUNDBITE OF MUSIC)
SPIEGEL: I honestly wish you could see this 'cause there's no way to explain, but I'll try. Devyn is a beautiful dancer. There's so much emotion in her dance. When you watch her, you can see all the subtlety and intelligence that she's not yet able to speak in words because she's only 16 years old. And it's really hard to be 16 years old. Devyn dances out her pain. But also, she dances out her strength. They're both there in every motion and movement that she makes just like they're both there in all of us, which deserves the power of our attention. And when? That's the question that we need to answer.
(SOUNDBITE OF SONG, "LIGHT")
SLEEPING AT LAST: (Singing) May these words be the first to find your ears. The world is brighter than the sun now that you're here. Though your eyes will need some time to adjust to the overwhelming light surrounding us...
ROSIN: Stick around after the break for a preview of next week's episode.
We all have an online self, and we work on it to make it cuter or cooler or smarter than we are. In some places, that means posting a picture of heirloom tomatoes or protest posters. In other places, it's posting guns.
(SOUNDBITE OF MUSIC)
UNIDENTIFIED PERSON #1: Like, you posted a picture of a gun, got 200 likes on this picture. But...
UNIDENTIFIED PERSON #1: ...You don't have no guns.
ROSIN: But in the end, what you actually have and don't have, that difference between your real self and your online self, it just might not matter.
UNIDENTIFIED PERSON #2: Yes, exactly. So welcome to the 21st century. What people say about things is more important than what things are.
ROSIN: And the stakes could be life or death.
UNIDENTIFIED PERSON #3: First thing I seen - like, I didn't see nothing else. First thing I seen was R.I.P. Brandon (ph). I was like, Brandon? I'm like, what Brandon?
ROSIN: Next week on INVISIBILIA, we visit a post-fact city with a new level of blur between reality and online noise. And we ask, is that what's coming for all of us?
(SOUNDBITE OF MUSIC)
ROSIN: That's it for us today. INVISIBILIA is hosted by me, Hanna Rosin.
SPIEGEL: And me, Alix Spiegel.
ROSIN: Our show is edited by Anne Gudenkauf. Cara Tallo is our executive producer.
SPIEGEL: She also happened to produce this episode.
ROSIN: INVISIBILIA is also produced by Yowei Shaw and Abby Wendle, assisted by B.A. Parker and Liza Yeager. Our project manager is Liana Simstrom. For this episode, we had help from Jake Arlow, Taylor Haney, Jay Sizz (ph), David Gutherz, Mark Memmott, Micah Ratner, Allison Baker, Greta Pittenger, Carmel Wroth, Emily Bogle, Julie Carli and R.C. Howard.
SPIEGEL: Are ever-patient technical director is Andy Huether, and our vice president of programming is Anya Grundmann. Special thanks today to the amazing Jake Jacobson and the Children's Mercy RAPS team for spending so much time with us to help us understand the world of amplified pain.
ROSIN: Thanks also to Ramtin Arablouei, Jonathan Barlow and Firefly for music used in this episode and to the band Sleeping At Last for letting us use their song "Light."
SPIEGEL: Additional music for this episode from Steven Ritchie, as well as Blue Dot Sessions. For more information about this music and to see original artwork by Cristina Chung for this episode, visit www.npr.org/invisibilia. And now for our moment of non-Zen.
UNIDENTIFIED PERSON #4: (Singing) One more half-morning, and then I get to go home. I get to go home. This is my singing song about going, going home - going, go, go, go, go, go, go, going home. Go, go, go.
SPIEGEL: Join us next week for more...
ROSIN: INVISIBILIA. Ow.
SPIEGEL: Wait a second.
ROSIN: That was from pain.
(SOUNDBITE OF MUSIC)
ROSIN: Hey, there. Thank you so much for listening. So did you know that INVISIBILIA has a newsletter? You can subscribe for all kinds of extra bonus content, like Q&As with our experts, supplemental reading around each episode, original illustrations. It's all there. Get it once a week during the run of our new season. Subscribe now at npr.org/newsletter/invisibilia.
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