Read the following article from Wired magazine and consider the implications, both positive and negative, that such technology might have in people’s lives. Ought we attempt to end pain? Is the only viable response to human dis/ability or difference to eliminate it? If so, why? If not, why not? How might we create a society in which people of typical and atypical physical, mental, and emotional abilities are able to work, live, and thrive alongside one another? To get full credit, include a concept from Panicola’s reading or the four principles noted in the introductory comments for this week as well. Note: I know this is a longer article than normal for the case study, but it is mostly narrative and easy to read, as it jumps between two contrasting but extreme stories. END PAIN FOREVER HOW A SINGLE GENE COULD BECOME A VOLUME KNOB FOR HUMAN SUFFERING by Erika Hayasaki | art by Sean Freeman 04.18.17 ON A SCALE of 1 to 10, how would you rate your pain? Would you say it aches, or would you say it stabs? Does it burn, or does it pinch? How long would you say you’ve been hurting? And are you taking anything for it? Steven Pete has no idea how you feel. Sitting in Cassava, a café in Longview, Washington, next to a bulletin board crammed with flyers and promises—your pain-free tomorrow starts today; remember: you’re not alone in your battle against peripheral neuropathy!—he tells me he cannot fathom aches or pinches or the searing scourge of peripheral neuropathy that keep millions of people awake at night or hooked on pills. He was born with a rare neurological condition called congenital insensitivity to pain, and for 36 years he has hovered at or near a 1 on the pain scale. He’s 5′ 8″, with glasses and thinning brown hair, and he has a road map of scars across his body, mostly hidden beneath a T-shirt bearing the partial crests of Batman, Green Lantern, Flash, and Superman. Because he never learned to avoid injury, which is the one thing pain is really good for, he gets injured a lot. When I ask how many bones he’s broken, he lets out a quick laugh. “Oh gosh. I haven’t actually done the count yet,” he says. “But somewhere probably around 70 or 80.” With each fracture, he didn’t feel much of anything—or even notice his injury at all. Whether he saw a doctor depended on how bad the break appeared to be. “A toe or a finger, I’d just take care of that myself,” he says, wagging a slightly bent index finger. “Duct tape.” What about something more serious? Pete pauses for a moment and recalls a white Washington day a few years ago. “We had thick snow, and we went inner-tubing down a hill. Well, I did a scorpion, where you take a running start and jump on the tube. You’re supposed to land on your stomach, but I hit it at the wrong angle. I face-planted on the hill, and my back legs just went straight up over my head.” Pete got up and returned to tubing, and for the next eight months he went on as usual, until he started noticing the movement in his left arm and shoulder felt off. His back felt funny too. He ended up getting an MRI. “The doctor looked at my MRI results, and he was like, ‘Have you been in a car accident? About six months ago? Were you skydiving?’ ” “I haven’t done either,” Pete replied. The doctor stared at his patient in disbelief. “You’ve got three fractured vertebrae.” Pete had broken his back. Throughout his body today, Pete has a strange feeling: “a weird radiating sensation,” as he describes it, an overall discomfort but not quite pain as you and I know it. He and others born with his condition have been compared to superheroes—indomitable, unbreakable. In his basement, where the shelves are lined with videogames about biologically and technologically enhanced soldiers, there is even a framed sketch of a character in full body armor, with the words painless pete. But Pete knows better. “There’s no way I could live a normal life right now if I could actually feel pain,” he says. He would probably be constrained to a bed or wheelchair from all the damage his body has sustained. His wife, Jessica, joins us at the café. She is petite and shy, with ice-blue eyes traced in black eyeliner. When I ask her what it’s like to live with a man who feels no pain, she sighs. “I worry about him all the time.” She worries about him working with his power tools in the basement. She worries about him cooking over a grill. She worries about bigger things too. “If he has a heart attack, he won’t be able to feel it,” she says. “He’ll rub his arm sometimes, and I freak out: ‘Are you OK?’ ” She looks over at Pete, who chuckles. “He thinks it’s funny,” she says. “I don’t think it’s funny.” PAM COSTA LIVES an hour and a half from Pete, outside Tacoma, Washington, and she occupies the other end of the pain scale. Costa is 51 and girlish, with shoulder-length auburn hair and a wide smile. At first glance, she has the rosy flush of someone who has spent time in the sun. But if you look closer at her cheeks, her feet, and her legs, they bear traces of a deeper shade of plum. Everywhere there is plum, there is pain. She was born with a rare neurological condition called erythromelalgia, otherwise known as man on fire syndrome, in which inflamed blood vessels throughout her body are constant sources of pain. Because the inflammation is exacerbated by physical contact, stress, and even the smallest elevation in surrounding temperature, Costa lives her life with great care. She wears loose-fitting clothes because fabric feels like a blowtorch against her skin. She sleeps with chilled pillows because the slightest heat makes her limbs feel like they are crackling. “Have you ever been out in the bitter, bitter cold, where your feet were ice?” she asks me. “Almost frostbite? Then you warm them up and it burns? That burning sensation: That is what it feels like all the time.” Costa begins and ends every day with a 50-milligram dose of morphine, just as she has for the past 35 years. And there are other pills. “I pop a lot of these,” Costa, barefoot, tells me as she opens her medicine cabinet and twists open a jumbo bottle of Aleve. The directions say not to exceed three pills a day, and though it is early afternoon and this is her fourth such pill in the past five hours, she expects to take a couple more before the day’s over. She is an instructor of psychology at a local college and the mother of a teenage daughter, and she agonizes over her morphine dependency. “I have a drive to stop—to just not be dependent on opiates,” she says. But without her medication, her pain becomes unbearable. A year ago she went to Las Vegas for a work conference, and the plane home got stuck on the tarmac with a mechanical issue. There was no air-conditioning, and the temperature started to rise. “An hour and a half in, people are taking off their clothes, fanning themselves,” she says. With the plane 20 feet from the gate and her skin throbbing, Costa persuaded a flight attendant to let her off. “I was so afraid I was going to pass out or throw up or get to where I was immobilized.” When the doors finally opened, she fled the plane, and she sat in the airport dousing herself with Smartwater. Costa and Pete have never met. Their daily negotiations with the world could not be more different. Yet scientists have uncovered a genetic link that binds their mirror-image conditions together, and pharmaceutical researchers are now deep into clinical trials on a new type of drug that seeks to mimic Pete’s condition to treat Costa and others living with chronic pain. Such a drug would not merely dull inflammation the way ibuprofen does or alter our neurochemistry the way opioids do: It would block the transmission of pain signals from cell to cell without ruinous side effects on the brain or body. The scale of the problem that this breakthrough could help solve is so vast that it’s difficult to take in. Pain has always been the price of being alive, but according to the National Institutes of Health, more than one in 10 American adults say that some part of their body hurts some or all of the time. That’s more than 25 million people. In study after study, more middle-aged Americans than ever before say they suffer from chronic pain. Because of that pain, more of them than ever before say they have trouble walking a quarter mile or climbing stairs. More say they have trouble spending time with friends. More say they can no longer work. To get through the day, many of these people turn to pills, and nearly 2 million Americans say they’re addicted to painkillers. If the pills stop working, many people try something else—80 percent of heroin users previously abused prescriptions—or they simply up (and up, and up) their dosage. Opioid overdoses led to 33,000 deaths in 2015, an all-time high and four times as many as in 2000. They now kill as many Americans every year as car accidents or guns do, and the crisis, it seems, is only getting worse. IF YOU BURN yourself on a stove, it hurts. More specifically, the nerve cells in your hand sense the heat and send pain signals to your spinal cord. The signal then travels up to the brain, which instructs you to howl with pain or issue the appropriate profanity. This is what’s known as acute pain. It can stab or pinch or shock, hurting like hell and telling us to stop doing what we are doing, take care of ourselves, get medicine, get help. The medical community knows how to treat most acute pain. Temporary prescriptions for opioids dull the sting from surgical incisions; anti-inflammatories can mask the discomfort of a sprain. Acute pain persists, but it also goes away. Acute pain is also easier to empathize with: Show someone an image of a pair of scissors cutting a hand, and the observer’s brain will react as much as if their own hand were being pinched. Chronic pain, on the other hand, is a phantom: an enduring ache, a tenderness that does not turn off
