The Man Who Feels No Pain
This story originally appeared in Men’s Health magazine.
“I almost killed him in Wyoming.”
This was just outside Gillette, Steve says, returning from a road trip to Sturgis. They had just rolled out of a rundown titty bar called Bryan’s Place. Steve had been nursing coffee since midnight, chatting up the owner. But Chris kept downing beers.
You might ask what could make a guy so angry he’d want to kill his younger brother. Steve’s answer is not unreasonable.
“He punched me in the face while I was driving!” he says, the old exasperation flaring up.
There will always be something special about fights between brothers. When you know each other that well, there’s a certain intimacy and conviction to the violence.
But the fights of Steve and Chris Pete were the stuff of legend.
“We had fights in the back of a truck driving down a logging road,” Steve says, “hitting each other with metal bars. I almost killed him that night, too, because I grabbed a chain and I wrapped it around his neck and I threw him off the back of the truck.”
Okay, that may be a bit extreme, even for brothers. But then, Steve and Chris were no ordinary brothers. They were both born with a rare mutation in their SCN9A gene, leaving them incapable of feeling pain. So it’s not that they were unusually vicious. It’s just that, once a fight got going, their bodies simply never gave them a reason to stop. To them, a punch in the face wasn’t a jarring assault so much as a rough way of getting someone’s attention. “More like a Hey I’m talking to you sort of thing.”
The condition is called Congenital Insensitivity to Pain (CIP). The mutation that causes it was only discovered in 2006, after a story surfaced of a 10 year-old in Pakistan who made his living sticking knives through his arms and walking on hot coals. Researchers eventually ID’d the mutant gene among the kid’s extended family, because by the time they arrived to investigate, the kid had already died, after jumping off a roof.
Steven Pete didn’t start attracting attention until 2012, when someone from a UK-based science museum invited him to participate in a pain-themed museum exhibit. In medical circles, cases of such rarity or exoticism are referred to as fascinomas. Often they’re just an occasion for gawking. But in Steve’s case, says Dr. Stephen Waxman, Chairman of Neurology at Yale University School of Medicine, and Director of the Neuroscience Research Center at the V.A. Medical Center, the attention might well be warranted. Indeed, sometimes fascinomas are the rungs by which science advances.
“If you think about the history of medical research,” Waxman says, “there are drugs like the statin drugs [which have] lengthened useful life in all industrialized society. And those drugs have their origins in studies of very rare families… where everyone was having heart attacks in their 20s.”
By the same token, guys like the Pete brothers, Waxman says, could be the key to unlocking a new generation of pain blockers which have all the potency of opioids but none of the undesirable side effects.
“That’s the holy grail of pain research,” says Waxman. For Steve, life as a fascinoma has had much to recommend it. Growing up, all the other kids admired him, because he would do the things they only dreamed of doing. Leap from a tree with a tattered umbrella, for instance, or hit that jump that went off a cliff. When he went mountain biking, no one but his brother Chris could keep up. Sometimes they covered 70 miles in a day. And whenever some kid was foolish enough to challenge him to a game of cigarette chicken, going forearm to forearm with a lit cigarette between, Steve always won.
Even now, hearing the stories, you can’t help being fascinated. Maybe because in him the love we all feel for big bangs and sharp knives and high places is so gloriously uncomplicated. Or maybe because, in being impervious to life’s greatest source of misery, he is halfway to being that which we all wish we could be — indestructible. Instinctively we attune ourselves to him. Because as much as there is to be learned about the nature of pain from studying someone who has never felt it, there may be even more to be learned about our own nature from someone who is missing its most human component.
And this is also why the story can’t help but read a bit like a Greek tragedy. Because by the time Steven Pete came to understand his own nature it was too late. By then the damage had been done. By then headlights had already swept across the body in the barn.
Of course there were downsides. The doctors, for instance, who got one look at him and ran panting for their microscopes. Or else the ones who never believed him — especially when he declined anesthesia.
“It freaks out dentists, too,” Steve says. “I had one dentist who was shaking because he thought he was gonna hurt me.”
Inevitably, perhaps, Steve also ended up serving as the welcoming committee whenever a new kid moved to town. “The other kids would say, Go fight that guy.”
At one point he was getting in fights twice a month. Some were broken up, but he never lost. Because he never stopped. And because he never hesitated.
“You just don’t care if you get hit,” he says. “So if someone throws a punch at you, you don’t have to pull away.”
It’s not just pain he didn’t feel, in other words. He also felt no fear. Injuries were as devoid of mystique to him as they might be to a surgeon. Once, when he accidentally sliced his forearm open with a whittling knife, he saved himself a doctor’s visit by stitching the wound himself. When he broke two bones in his foot after drunkenly vaulting a couch at a birthday party, the remedy was duct tape and a stiff boot. (“I had to work that day.”)
With fear removed from the equation, you begin to see what a head game pain can be. In one 2010 study, for instance, volunteers who were subjected to blasts from a laser reported more pain when told that the laser might not be safe. By the same token, volunteers subjected to a similarly painful stimulus reported less pain when focusing on a picture of a romantic partner.
“If pain didn’t have an emotional component to it,” says Allan Basbaum, Professor of Anatomy at the UCSF School of Medicine, “it wouldn’t be pain, it would just be sensation.”
In fact, the emotional correlates of pain are threaded through our lives in ways too complex to name. Nor are they always negative. Think of the deep satisfaction you feel on completing an agonizing workout. Or the esprit de corp that pain can produce when shared among teammates. Pain sharpens our attention, facilitates empathy, even heightens, some studies show, our capacity for pleasure.
Stripped of pain, Steve’s injuries never gave rise to the associated emotions that usually imbue pain with meaning. Which may also explain why he has such a hard time remembering them.
“My memory is shot,” he says. “I can hardly recall anything.”
And this is true of even the most heinous injuries. Occasionally he’ll run into someone who knew him growing up, and who to this day is haunted by some traumatic event that Steve can’t recall. Like that time he jumped off a swing in middle school.
“His bone was just kinda like hanging out of his leg,” one woman recalls, “and he’s just standing there laughing.”
Laughter, actually, is something you hear often from Steve. And why not? Take the pain away and the world becomes a much funnier place. Even twenty years later, Steve still cracks up remembering how a kid named JR got nailed in the face by a soccer ball. Sure, his nose was bloody. But what does that signify? This is what it looks like to live with a world without pain.
“I do enjoy slapstick,” Steve says. “Like The Three Stooges — not the new one of course, the new one sucks.”
In early photos, actually, Steve bears an uncanny resemblance to Moe — same blocky features, same bowl haircut. Now, with his hair cut short, he’s got more of a dented look, like a veteran hockey enforcer. There’s a stump where a tooth’s gone missing. (“I guess it just rotted and fell out.”)
The Stooges, of course, were human cartoons. We all love them. But it does make you wonder whether Steve’s ignorance of pain has made it harder to relate to others. His wife, for instance, suffers from migraines.
“He’s getting better,” she says. “He doesn’t laugh at me anymore. But with other people sometimes he’ll laugh.”
“I try to have empathy,” Steve says, “but…”
He gives a helpless shrug and stares off into a blankness that he waits for his wife to fill in.
Once you’re listening for it, you start hearing pain in a lot of Steve’s stories. When he was a kid, for instance, he’d go coyote hunting with a .22. With the game warden’s bounty, each pair of ears was worth $20, and on a good night you could make real money, popping them one by one as the lantern picked their glowing eyes out of the dark.
The trick was the bait — a rabbit with a paw chopped off.
“It squeals in pain, and when the coyotes hear that, it attracts them,” Steve says. “Then you just start shooting.”
Philosophers have long wrestled with whether you need to feel pain in order to understand the pain of others. Several years ago, researchers from France and British Columbia teamed up to settle the question. Rounding up 12 volunteers who were, like the Pete brothers, congenitally insensitive to pain, they screened a series of videos from stupidvideos.com — everything from a dog biting a man’s face to a missed jump from diving board. In every instance, the 12 volunteers significantly underestimated the pain of the video subjects.
Of course, even those lacking a SCN9A mutation (doctors especially, studies show) are prone to underestimating the pain of others. Pain, after all, is our most private possession. Or, as one scholar memorably put it: “To have great pain is to have certainty; to hear that another person has pain is to have doubt.”
But this was the great thing about growing up with Chris. Because Steve never had to worry that he might be missing something, that his brother might somehow be suffering in a way he couldn’t understand.
Then again, Chris never seemed to have a problem with empathy, despite his condition.
“He was a lot more empathic,” Janette Pete says.
That’s Chris and Steve’s mom talking, on the porch of the house just north of Portland where the boys grew up. The porch overlooks a steep grade that the boys used to roll down inside a 55-gallon metal drum. A driveway runs alongside, where they took turns lying on the gravel, using each other’s head for a bike ramp.
Chris was always the quiet one, his mom says, the kind of kid who never thrived in a social context, but could lose himself for hours inscribing Salish emblems on the head of a hand-made drum. Which he would then give to you without a second thought.
“Chris was always fishing and hunting,” Janette says. When they took Steve fishing he’d lie at the bottom of the boat, pull a tarp over himself, and go to sleep. Steve didn’t have the patience.”
You could see the difference between the brothers in the kinds of injuries they got. Steve was reckless, headlong, the kind of kid who stuck keys in electric outlets because he liked the tingle that shot up his arm. (“I like electricity,” Steve says. “I still like it. Like electrical fences — it’s cool if you grab it because you can feel the pulse.”)
Even today there’s a rule in Steve’s family: Don’t follow Steve. Even Chris would defer, and let Steve go first. Like that time it snowed four inches, and they climbed with a metal-runner sled onto the roof of the barn.
“I just dropped and landed on my back with the sled right on top of me. And the ground I hit was as solid as rock.”
He never went to the hospital, but suspects he cracked a few ribs. (“I had a hard time breathing for a couple days. Actually maybe a couple weeks.”)
Today, Steve’s body carries the toll of this punishment. He has severe arthritis in his hands, for instance. He can’t feel it, but sometimes his fingers lock up and he has to physically wrench them open.
“I found out Friday I have two fractured vertebrae,” Steve says. “My T8 and my T9. The doctor said it happened 12 months ago. I have no idea how… He asked me if I did any bungie jumping or was in a car wreck.”
Steve’s not too concerned about the fractures. “That can be repaired,” he says.
The biggest issue right now is his knee, which is gradually giving out, perhaps from all the times he jumped from trees, windows, roofs, etc., and landed straight-legged. You can see it in the way he walks, with his knee canted inward, as if it’s about to buckle. Which it is.
As Frank Vertosick, MD, points out in his book, Why We Hurt, there’s no structural reason our joints can’t bend in both directions. “As we take each step, subtle pain sensations provide our muscles the information they need to keep the joints in the correct alignment.”
Pain, in other words, doesn’t just warn us away from hot stoves. It also serves as a kind of on-board helper app, transmitting a steady whisper of data to help us use our bodies to best effect. Which explains why professional football players, who often pay about as much attention to that data as Steve does, are three times more likely to develop early-onset arthritis. And also why, according to a 2011 survey, an estimated 6% of retired football players (average age: 48) require the use of a cane, walker or wheelchair.
The very existence of pain, Vertosick argues, speaks volumes about our place in evolution’s hierarchy. Unlike a centipede, for instance, we have basically zero redundancy — just as many limbs as we require, and no more. This makes our bodies highly efficient, but also highly perishable. Especially given that (unlike, say, frogs) our perishability is not offset by the knack for mass reproduction. The amount of pain we feel, in other words, and the intelligence we use to interpret that pain, directly reflects our value to the species, as well as how easily each of us can be wiped out.
The Pete brothers grew up like centipedes, as if they had numberless limbs. Part of Janette’s job was to teach them that they didn’t. The job was made more difficult because she couldn’t even spank them. Instead, she’d squirt them in the face with a water bottle, like misbehaving cats.
Sitting on her front porch, she taps a cigarette and cackles, her talk still full of vitriol at the legions of skeptical doctors, dimwitted schoolteachers, and sanctimonious child protection agents that she’s had to deal with. But somewhere behind this complacent facade you can sense the anguish of a mom who can’t be sure that she struck the right balance between protecting her boys and letting them run free. At least she didn’t sew their eyes shut, like that CIP case in Minnesota who kept scratching her corneas.
“I’m pissed at those parents,” Janette says. “I’d like to go shoot the doctor that even suggested that.”
Even though Steve was more reckless, somehow it always seemed like Chris was the one who paid the dearer price. Typically, the lasting damage he incurred owed less to the daredevil extroversion for which Steve was known than the reflexive harm he wrought upon himself.
“Chris did body contortions,” Janette says. “He’d throw his legs up over his head backward. It gave me the chills.”
“I used love to watch him do that,” Steve chuckles.
“He would egg him on!” Janette says.
Janette was the only one who could come between the brothers when they started fighting. It was the usual stuff. Steve, the older brother, was always bossing Chris around. And Chris, being a quiet kid, usually rolled with it, indeed often depended on Steve to tell him what to do. But every now and then he’d rebel, and all hell broke loose. Then Janette would make them sit with their arms around each other until they made up.
“I said, I tell you what, if you guys are ever fighting, and I come home and find one of you dead, the other one might as well kiss their butt goodbye because you’re gonna be dead, too.”
There’s always a last fight between brothers. A moment when the warring we are born to moves on to new battlefields. That’s when the shared history begins to outweigh the aggravation, and brothers actually become valuable to each other.
For Steve and Chris Pete, the pivotal moment came a few miles outside Gillette. By that point, Chris had never needed his big brother more. He had started drinking when he was 19, around the time Steve started spending more time with his girlfriend. Now 26, Chris had already been through several detox programs.
The drinking may have been his way of coping as his body began to break down. Years of slouching in school had deformed his spine, and as his vertebrae chewed into his spinal cord he was losing the use of one arm. Semi-paralyzed, he couldn’t work. Nor was he eligible for SSI, since, by the reasoning of one judge anyway, he wasn’t actually in pain.
Steve struggled too, with his arthritis and bum leg. But even if the leg had to come off it wouldn’t mean the loss of that which he most valued in life — his wife and kids. And video games.
Both brothers played video games growing up. It was one of the few ways to keep sane during their many long stays in the hospital. Steve had gone on to become a serious gamer. The mayhem of first-person shooters suited him. The violence could not be desensitizing to one who already felt nothing. And no matter how many times you got shot, blown up, stabbed in the neck with a combat knife, the biggest impact was only on your fingertips.
But Chris still preferred the stillness of the woods to the mania of video games. It was only there that he could actually hear himself. As his body gave out, though, the woods were becoming ever more inaccessible. It was only a matter of time, doctors said, before he landed in a wheelchair. So he kept drinking and turned inward, like he always did. It had to come to a head eventually. And when it did his brother was there for him.
“I picked him up from somewhere when he was drunk,” Steve says. “I told him, If you don’t change the way you live, you’re not going to be there to teach my kids all the things I can’t teach them. Because I’m not into hunting or fishing or anything like that. And you are. So I expect you to be the one to teach my kids that stuff.”
It was his best shot, and Steve let him have it. It was also exactly the kind of bossy, big brother move that Chris used to hate. In the past, he might have reached across and socked him. And, per protocol for subduing fractious brothers with a dangerous gene mutation, Steve would have pulled over, wrapped the seatbelt around Chris’s neck, and commenced punching his lights out.
But Steve and Chris Pete’s fighting days were over. In a way, they’d been replaced by something even more terrible. Because if there’s one thing worse than a fight between brothers, it’s the fight a man wages against himself.
Twenty miles to the east of Castle Rock, the small town where Steve and Chris Pete grew up, the shattered hulk of Mt. St. Helens broods under an overcast sky. When the volcano erupted in 1980, one year before Steve was born, it dropped two feet of ash on his parents’ house. Today, as the magma gradually recharges, volcanoes remain one of the few things (along with appendicitis, and, of course, sharks) that Steve actually fears.
Now rain tickles the windshield as we wind slowly through the stands of cedar and doug fir, hoping for a view of the dire landmark. As kids, Steve and Chris used to come up here all the time. It was the kind of place Chris loved — all wind and distance. Sometimes you could catch a glimpse of an elk herd.
“Part of me wishes he could have stuck with it for a while, and fought through,” Steve says. “It’s kind of a selfish thing to ask, though, because I know he was going through his own little hell.”
Steve got the call from his father, who came one Thursday and found Chris hanging in the barn.
“After that it was just kinda like autopilot,” Steve says. He remembers talking to the chaplain, and then the coroner’s van disappearing down the driveway.
“I was thinking, Damn, this is the last time he’s gonna be — the last time he’s leaving the house, yknow? After that, even days after that, it was just kind of foggy. Just kinda like living in disbelief.”
That was six years ago. Steve hasn’t jumped off any roofs since.
“Once Chris passed I really started to slow things down a lot more,” he says.
He still enjoys The Three Stooges, and their contemporary imitators. Still laughs recalling childhood pranks — the Alka Seltzer he put on some kid’s burger at lunch.
But the old rule breaker in him has been chastened somewhat. He’s married now, the father of three kids — none of whom have CIP, since his wife doesn’t carry the mutated SCN9A gene. His admin job at the department of health and human services keeps him on the straight and narrow. And every now and then he flies to London to help a leading pain researcher sort out the science that may one day make his condition available to everyone.
In limited doses of course. Because if Steve’s story tells us anything it’s that pain does serve a purpose. True, no one ever born hasn’t at some point wished he couldn’t feel it; but then, no one ever born hasn’t at some point also wished he could leap from a tree with a kite and keep right on flying.
Between these two wishes lie the basic ingredients of every life story: It’s either man meets limit, and overcomes; or man meets limit and hangs a left. The fact is that our ambitions are by nature lethal. To leap, soar, scale great heights. It’s up to us to figure out how much caution to use, and when recklessness is still warranted. To distinguish between good pain and bad pain. And endlessly recalibrate to make the absolute most of our mortal limits.
And the same is true of Steven Pete, except for him painlessness is itself the limit. Not that he would ever want to be free of it, even if technology could somehow magically make that possible. (Unlike sight, pain is not one of those senses you hope to recover, after a certain point.)
Call him a slow learner, but he still hopes to bungie jump one day. Closer to earth, he’s pursuing the interest he’s always had in electronics, scouring the internet for damaged iPhones, tablets, laptops, and TVs that he can repair in the workshop he carved out of a closet. His most recent acquisition is a router that will help him integrate electronics into woodwork. When the time does come to amputate, he looks forward to equipping his prosthetic with a custom iPod dock.
Now, as the road winds ever higher toward the mountain lookout, the rain thickens into snow that wools the windows and whitens the tiered eaves of the evergreens. When they were young, the brothers used come up here and have snowball fights, packing the snow tight with bare hands until their skin dried and cracked, and stained the snow red.
Steve was re-watching footage from those days recently, a documentary some French filmmaker shot. At the end of the film you can see Chris, twelve at the time, writing in the snow with a stick.
“It said: Chris was here,” Steve says.
The snow comes down in a white whisper. Suddenly all color is gone and he’s fighting again, fighting the pain of his lost brother.
Which is odd. Because he’s not supposed to feel pain. Technically, he shouldn’t be able to feel pain at all.