Erika Hayasaki on the reality of landing a big freelance story

VERSION 1: The Family That Can't Feel Pain

Will their genes unlock the mysteries of pain—and future treatments—for the rest of us? Do you always include a headline and subhead? I don't always, but I try to. I think it helps because you have to grab an editor's attention and ask them to read a long pitch with everything else they're doing.

At this point, how often do you send full pitches as opposed to chatting about ideas with editors or dashing off a quick paragraph?I still do full pitches for the most part. I find editors still want them because they have to sell the editors above them. A pitch should include storytelling elements and explain why the story is important, why you're the person to tell it, and what access you have.

In 1983, an 8-year-old girl named Melissa was admitted to a Tulsa, Oklahoma, psychiatric clinic for self-mutilation. She had ripped away her own flesh on her arms and legs, sometimes to the bone. The psychiatrists were puzzled by her case. Melissa’s behavior didn’t seem to fit the psychological pattern of children who mutilate themselves. She wasn’t depressed, agitated, or obsessive compulsive. She just seemed to have, well, an itch that she couldn’t seem to scratch right, according to her. A local pediatrician, Dr. James Coldwell, was called in to treat her. Coldwell decided to run a few tests—skin and nerve biopsies, and he studied her amino acid levels, radiological scans and cells. Digging into her medical history, he discovered that she had broken her right foot at 2. Her mother remembered that incident. Melissa had not seemed too bothered by the injury. At 7, Melissa fractured her left tibia and fibula after falling off a grocery cart. Again, she showed no evidence of feeling pain and no indication that she was overly bothered by the break. Coldwell thought this girl’s medical problems didn’t seem as much psychiatric, as physical. He continued to treat her for the next decade. At 10, she came in to the emergency room again. This time, she had literally scratched the right side of her nose off. How did you find this story? I was searching through a database of academic papers for the condition of congenital insensitivity. This was the most recent study, there was no coverage of it, and it was super fascinating. I wanted to initially write about one family, but it morphed into something different. What jumped out me were the pictures. You rarely see photos like that in a medical journal, and it put a face to it and the fact that it had gone on for generations.Why did you decide to include photos?I don't think I'd ever done that before, but in this case the photos are what grabbed me and humanized the study for me. The image of someone scratching off her own nose is pretty fascinating.

A pitch should include storytelling elements and explain why the story is important, why you're the person to tell it, and what access you have.

Even with a half-missing nose, Melissa still felt no pain. Instead, she felt “electrical stimulations” throughout her body. Or other times she felt random itching, along with the electrical stimulations, which led her to scratch violently. She didn’t know when to stop. Her body just didn’t send her warnings like that.

“You know if something irritates your nose and you just have to get something to wipe your nose? You have this irresistible urge to sneeze?” Dr. Coldwell tells me. “For her, it’s like a tickle…not an intense pain. If you broke a bone it would hurt you so bad you couldn't walk on it. When Melissa broke her leg, she continued to walk on it, didn't cry or anything. It’s very puzzling.”

Dr. Coldwell sent her case to doctors at the Center for Metabolic Bone Disease and Molecular Research in St. Louis, Missouri. They came up with a diagnosis. She had a rare genetic disorder called congenital insensitivity to pain, characterized by the inability to feel pain. About two-dozen people around the world are known to have the disorder, which is caused by a gene mutation in either SCN9A or SCN11A encoding. Melissa’s mutation was in her SCN11A gene. Congenital insensitivity to pain is a heritable disorder.

Melissa grew up. She had a son, born at only 33 weeks gestation following a car accident. He was 4 pounds, 10 ounces. Her son remained healthy, until he turned 1. He got a spider bite, and scratched it on his neck to the point of ripping his skin off. At 2, he fell from a dresser and fractured his right arm. Like his mom, he didn’t seem to feel pain. This made him, of course, more susceptible to accidents. Also like his mom, he didn’t know when to stop doing something because something might hurt him. He would sustain 12 more fractures in the next nine years. Doctors ran tests. He also had a mutation in his SCN11A gene. Where did all these details come from? They came from the study and from the pediatrician who treated them.

I wanted to show that there were characters—interesting people who could carry a complicated story. For a longform story, you need to get inside the house and see their day-to-day lives.

Melissa also had a daughter, this time by a different man. Her first child had been born by C-section, but this time she had a natural birth. Melissa says it was her first time feeling something close to pain—but it was nothing like a normal woman’s birth experience. She hoped she would not pass on this disorder to another child, but soon realized her daughter would not be so lucky. As a baby, the girl destroyed parts of her lips, fingers, and toes by chewing them off. By 1 1/2 years old, her daughter had sustained five fractures. By 7, she had three more fractures. Like her brother, her inability to feel pain also provided her with an impressive ability to twist her body into contorted positions. Why did you decide to spend so many paragraphs describing Melissa and her children?I wanted to show that there were characters—interesting people who could carry a complicated story. For a longform story, you need to get inside the house and see their day-to-day lives. I hadn't flown there yet, but I had done enough pre-reporting over the phone and based on the study to pull out key details that prove to an editor that there's enough there.

The family became a kind of local freak show in their small town. Mom with a part-missing nose. And her bendy kids who also had awful scars. Dr. Coldwell even helped Melissa get plastic surgery to repair her nose (he worked with the family even though they did not have much money). But Melissa scratched her surgically enhanced nose off, too.

They continue to their lives quietly in rural Oklahoma. Melissa is a stay-at-home mom. Both children are now in their 20s. Her son has a full-time job. Her daughter, however, is too impaired to work. She is homebound. “The story is not finished, of course,” Dr. Coldwell says. Melissa’s kids could soon have their own kids, and the cycle of a pain-free life, that has actually been quite emotionally painful for all of them, will continue. What research had you done by the time you pitched?I'd read the journal article and gotten access to the doctor. He'd agreed to bring me to the family and had asked whether they were comfortable with that. I had also reached out to some of the pharmaceutical companies to find out about the science they were doing.

There has to be a universal issue that we're all trying to figure out. Without that, the kind of work we do would be very voyeuristic.

The study of people with genes like theirs, however, is anything but quiet in the medical and pharmaceutical research communities. Drug companies in particular believe that the genes of people like Melissa and her two children might help revolutionize the future of pain prevention for all of us. There have been scientific studies of two families in Pakistan, a man in Oregon, and a girl in Georgia who also have this rare painless disorder. There is a multibillion dollar painkiller industry just waiting to unlock the secret drug to end aches, cramps and physical torment, and they are hoping people like Melissa will hold the key. One company, Xenon Pharmaceuticals, is already investing heavily in studying individuals with congenital insensitivity to pain, and is already working toward developing drugs based on such research. Was this part crucial for making the story go beyond just a curiosity? Would it have worked if the pitch was just about this family? It's usually not enough for a magazine to have a strictly character-driven story—their lives have to speak to something larger. Otherwise why should I care? That's what takes narrative writing out of the realm of narrative television, which is just about watching people's crazy lives unfold. There has to be a universal issue that we're all trying to figure out. Without that, the kind of work we do would be very voyeuristic. This piece goes into questions about the nature of pain in our lives. We're looking for pain management in ways that aren't dependent on drugs and that's more important now than ever, but there's also actual research happening around these conditions. As a journalist, I don't think you can say you're going to solve the world's problems. But one editor told me early on in my career that we're trying to part the curtain on humanity. That's part of our fundamental responsibility.

Pain, however uncomfortable or awful, is necessary for our survival. It warns us and protects us. Studies show people with congenital insensitivity to pain face shortened life spans, and the clock is ticking for Melissa and her family. It’s not that they might die too early from a disease like cancer or a heart attack. It’s more like that wouldn’t even notice the pain signals warning them of such dangers in the first place.

Dr. Coldwell is now 85 years old, still practicing as a pediatrician in Oklahoma, still very close to this family (he’s now been a part of their lives for three decades). He has agreed to meet with me in person and take me to Melissa’s home to meet her family. He is available to do this in the next month or so. Why didn't you talk to the family beforehand? What kind of access had you confirmed?The doctor wanted to be there when I met them for the first time. They were his patients, and he wanted to protect them. He had gotten their approval but wasn't going to unleash me on them until he'd felt me out in person. I have also been in touch with the various genetic, molecular and skeletal scientists who have been working with this family over the last two decades. How many had you talked to?I had emailed all eight scientists on the paper, in addition to others. They didn't all reply, but I definitely reached at least half a dozen.Their paper on Melissa and her kids, “Congenital insensitivity to pain: Fracturing without apparent skeletal pathobiology caused by an autosomal dominant, second mutation in SCN11A encoding voltage-gated sodium channel,” appeared in the issue of Bone in March.

I think this would be a fascinating story for Wired, one that merges narrative storytelling around this family and these doctors with current science surrounding pain, genes, drug companies and technology. How did you know this was a good story for Wired? Wired does good science coverage, and the genetic research part fit that. I also had a good relationship with the editor. I'd just written a story for him that was pretty well received, about a woman who had no access to her episodic memory.

Is this how long your pitches usually are? My longform pitches tend to be long, probably too long. But I have to show that there are characters and enough there for longform. Wired at the time enforced a shorter pitch length, which is probably good practice for me.

What happened after you sent the pitch? My editor was interested in the topic of pain, but he thought the story went beyond this one family. He suggested I widen the lens to “the future of pain” and look at other research going on in the space of pain treatment. He also wanted to report from a pharmaceutical company doing promising R&D. I was discouraged, because I thought this family would be such a good story, but I wanted to find a way to explore the topic. I ended up finding two people who lived close to each other but were on opposite ends of the pain spectrum. It ended up being a good piece, but it started somewhere else entirely.

VERSION 2: Future of Pain

What was the main shift that happened with this version of the pitch?I had to figure out the most important research going on around pain right now, and it happened to be around a different genetic mutation than the one relevant to the initial family. People who had a lack and abundance of pain shared mutations in this same gene, so you could link people on the extremes. It was a more important story scientifically, but personally I still think Melissa and her family would be a fascinating story.


On a scale of one to ten, how would you rate your pain? Why start with this question addressing the reader directly? That was sort of how I was addressing the editors. It was getting at the question of: Why does this matter for all of us? Yes, there's a person who has extreme pain and one who has none and it's connected, but it's still not enough if you don't have way to connect it to everyone else who has experienced pain. In my initial draft, I think I started with a character, but this gets to the point quicker.

Every day of her life, Pamela Costa feels like her body is on fire. So call that a constant six to ten. The 50-year-old drives her car with piles of ice cubes around her feet. She can’t wear socks, sweaters, or long pants, because the slightest sensation of heat burns like hot coals. She has a rare condition called erythromelalgia, or “man-on-fire” disorder. Costa has taken morphine for the last 20 years. She can’t function without it, but it doesn’t cure the pain. 25 members of her family over three generations have also had man-on-fire syndrome. Two cousins overdosed on pain medications; the family figures it was intentional.

It was getting at the question of: Why does this matter for all of us?

Steven Pete lives just an hour and a half from Costa’s in Washington State, but on the very far side of the pain scale—at somewhere near constant zero. As a baby, Pete chewed off his tongue while teething because he didn’t feel the pain signals telling him to stop. He has an equally rare condition called congenital insensitivity to pain. You can hammer a nail into his palm and he won’t flinch. The damage from a life of injuries has left him with severe arthritis and worn joints and bones. Steven’s brother Chris had the same condition, and ended up partially paralyzed from back, bone and joint problems. After doctors told Chris that he would probably spend his life in a wheelchair, he killed himself in 2008. What were the reporting steps you took to develop this second pitch? Stephen Waxman, a scientist at Yale, explained everything to me and connected me to one of the subjects. I was able to connect with other subjects on my own. I had also been arranging interviews with the pharmaceutical company. And I had reached out to the characters: Waxman, Pam and Steven.

In the early 2000s, scientists launched a worldwide search for people like Costa and people like Pete. Researchers had long suspected that sodium channels—pathways inside of cell membranes that allow messages in and out—are involved in pain. But they didn’t know which of the body’s nine sodium channels to implicate. In 2004, a team of geneticists in Beijing discovered that patients with man-on-fire syndrome have a mutation in a gene called SCN9A, which regulates a particular sodium channel, Nav 1.7. Two years later, a different group of researchers found that people with congenital insensitivity to pain have a mutation on the same gene, affecting the same sodium channel. For scientists, it was an incredibly rare finding—a clear link between loss and gain of function within one gene. The mutations were on the same pathway. People with man-on-fire syndrome have amped-up pain signaling. The volume is always on full blast, and can’t be turned down. For people with congenital insensitivity to pain, the system is on mute. Had Pam and Steven been written about before? And what were you hoping to add to existing stories about the topic of pain? Steven and Pam had both been in the media before. The painlessness and the pain had also been written about, but I was able to draw a connection between the two by talking to Waxman. Both stories had been told separately, but no one had told them together as a connected arc. When stories have been done, I always ask: How can you do it in a way that's different or better or brings in research years later that updates things?

For the rest of us, the huge implication of these findings is that it might be possible to stick a volume dial on the human pain scale. Right now, pharmaceutical companies are racing to develop safe drugs that would mimic congenital insensitivity to pain—true pain blockers. These would not dull the pain of inflammation the way current pain medications like ibuprofen or codeine do; or TKTKTK the way addictive opioids do. Is it OK to include a TK in a pitch?I definitely filled in the TK on the draft I sent in! I wouldn't send a TK in a pitch. Last week, Pfizer announced the first results in humans on a new class of pain medications that selectively target the sodium channel Nav1.7, and do not have central side effects. The Pfizer studies were performed on patients with erythromelalgia. Xenon Pharmaceuticals, which has been studying patients with congenital insensitivity to pain, has also reported pain reduction in erythromelalgia patients in clinical trials. But both are banking on the possibility that these drugs will eventually target other kinds of pain as well. “There’s no question about it,” says Dr. Paul Goldberg, the scientist working on the drugs at Xenon. “We know with zero doubt that when you lose function on 1.7, you lose the ability to perceive pain. It makes sense this is the way the whole industry is going.” Had you confirmed access with Xenon? Yes, the initial person I talked to ended up leaving, but I had gotten the OK to come in.

When stories have been done, I always ask: How can you do it in a way that's different or better or brings in research years later that updates things?

Just to bracket the stakes here: Physical pain is pretty much one of the chief downsides of the human condition, and its treatment is an epic public health nightmare that layers pathology on top of pathology (see: opiate addiction, epidemic of; rampant under-treatment of chronic pain; the observed culture-wide tendency to underrate the pain of women and minorities). It’s also an immense business ($TK a year). Researchers have been searching for alternatives to pain treatment forever; this is the most promising new avenue yet—and the story of its discovery naturally lends itself to the kind of extreme-case portrait. How important was this zooming out?With most magazines, the nutgraf is so important. Some places you can write for digitally like really good narratives and don't have to have a nutgraf, but magazines usually need the hook.

How long did the whole process take, from your initial pitch to a green light? Is it common to have to revise a pitch so drastically? Probably three months from the time I sent the first pitch to the editor to the time it was approved at an editorial meeting. The whole process to publication took about a year. I normally do not have to re-report a whole pitch. Sometimes you have to rework it a bit or answer questions from editors, but this was abnormal. I did it because I thought it was an interesting story, and I wanted to explore it more.