The things you think are the disasters in your life are not the disasters really. Almost anything can be turned around: out of every ditch, a path, if you can only see it.
—Hilary Mantel, Bring Up the Bodies
Many times, as I’ve been writing and researching this book, I’ve felt humbled by the achievements of the people I’ve met. That’s the way it should be—it wouldn’t be much of a book on superhumans if I didn’t feel impressed by these people’s abilities. But of everyone I’ve interviewed, one person stands out, and that’s Carmen Tarleton. Her story is at first deeply shocking and disturbing, but bear with me, because for all its exceptional brutality, Carmen’s response—her resilience—is even more extraordinary.
On June 10, 2007, Carmen, then thirty-eight, was at home with her young daughters in Thetford, a small town in Vermont in the northeastern United States, when her estranged husband broke into the house. Herbert Rogers was looking for a man he supposed she was seeing, but finding no man there, he attacked Carmen. “I just lost it,” he told police later. He beat Carmen with a baseball bat so violently he broke her arm and eye socket. Then he doused her in industrial-strength lye—a sodium hydroxide solution used in cleaning. One ear, her eyelids, and much of her face was burned away. She suffered burns on 80 percent of her body.
I met Bohdan Pomohac, one of her surgeons, at Boston’s Brigham and Women’s Hospital. “In terms of injuries inflicted by another human being, it’s certainly one of the worst I’ve ever seen,” he told me. “In brutality it was beyond anything we have seen.”
Carmen was first taken to Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, the clinic where she herself worked as a registered nurse. She was then airlifted to Brigham, where she was put into a medically induced coma in an attempt to save her life. Her face was almost completely destroyed; her family was able to recognize Carmen only by her teeth.
When people experience terrible head injuries, doctors can put them into a barbiturate coma in order to shut down brain function. This prevents the brain from damaging itself further by trying to keep going without an adequate blood supply.
Carmen remained in a coma for three months while Pomohac and his team performed thirty-eight separate surgical operations. She was left covered in a patchwork of skin grafts, and these, together with all the blood transfusions she’d received over the months, meant that she had become immunologically vaccinated against at least 98 percent of the population. She was blind, severely disfigured, and lacked many normal facial functions. She was in a lot of pain. But she was alive, and somehow, somewhere, the germ of something remained within her.
“Even when I first woke up from the coma I just knew it was such a big event, and it was so strange, that it had other meanings for me,” she says. “I could help a lot of people.”
Carmen started doing inspirational speaking. “I looked terrible and people felt so sorry for me, but I wanted to show people it didn’t matter what I looked like.” It’s the ultimate demonstration that it’s what’s on the inside that counts. Photos of Carmen from that time are shocking; it hardly seems possible that she could’ve lived, let alone coped. I think the most painful thing to see are her eyes. Because, with all the grafts, she didn’t have proper eyelids, her eyeballs look out through small circular holes cut into the skin. She had synthetic corneas and couldn’t blink, and the edges of the skin are red and raw.
“It forced me, Rowan, to look at the big picture of what life is really about. And that’s where I’ve had to go, because this horrific event occurred and I found a way through it. And not because I’m different or special, but because that’s what was meant to be: to show people you can be involved in these incredible events and you can forgive, totally, and move on. And that’s what I’ve been able to do.”
She says she has forgiven her now ex-husband for what he did. (In return for pleading guilty to maiming, he accepted a sentence of thirty to seventy years in prison. Seventy years—rather than life—was chosen as the maximum, as a life sentence triggers an automatic appeal, which no one, including the husband, wanted.) “I was never religious,” she told me. “I took responsibility for my life. I was not responsible for what happened, for what he chose to do, but I certainly was responsible from that day forward.”
Even after leaving the hospital, Carmen was still in a lot of pain. The injuries to her skin and the multiple grafts caused tightness when they healed, and this caused all sorts of secondary problems with the mobility of her neck and spine. Carmen was unable to move freely without pain and was taking huge amounts of narcotics to try and deal with that. Still she kept going.
Then, on Valentine’s Day 2013, Carmen’s life changed again. She became only the seventh American to undergo a complete face transplant. The operation was performed by Bohdan Pomohac.
Pomohac says that for a long time he didn’t think of Carmen as a candidate for a face transplant because she was so immunologically challenged. All those grafts and transfusions had primed her body to attack almost any donated tissue. But there were several pressing reasons why she needed a new face. The pain and the narcotics, yes, but as well as that, the opening onto her eyeball was getting bigger, and this was threatening the integrity of the synthetic cornea. Then there was the drooling, and the problems with speaking and eating.
The operation was a technical success, but then there was the immune system to deal with. Her body mounted a massive rejection of the face, and although for a period of four weeks after the operation, she was pumped up on numerous immunosuppressants, the face was still being rejected, and there was only one more drug left to use. A full dose would help suppress the rejection, but would also completely wipe out her immune system, to such an extent that any trivial infection would kill her. In the end, with Carmen’s consent, they gave her a little of that final drug, and that turned it around. That last bit was enough to tame her immune system. She got better. Carmen says she felt that she had made a choice to live.
“It’s possible there is a psychological force that carries people through, but my official answer has to be that the statistics were still a little bit in our favor,” says Pomohac. “Sometimes people can surprise you with their resilience.”
Carmen calls her face the gift of love. “I think of my donor Cheryl almost daily. I have pictures of her; I have one of her scarves on the handle to my closet.”
With most face transplants, the bone structure of the recipient is markedly different to that of the donor, so that when the face settles, the recipient doesn’t end up looking like the donor. But with Carmen this isn’t the case. Clearly she doesn’t look exactly like her donor, but there is a definite resemblance. When she talked about what it was like to have someone else’s face, it was the only time in our conversation where she faltered.
“That’s a big part of my life, being grateful for the comfort I have in having, you know, her face,” she said. “It’s one of the biggest gifts I could receive.”
On February 14, the fourth anniversary of her transplant, she was going out for dinner with her boyfriend, but on other Valentine’s Days she’d done something a bit more unusual. “Sometimes I see my donor’s daughter for Valentine’s Day.”
Carmen has struck up a friendship with Marinda Righter, the daughter of the woman whose face she now wears. It was Marinda who gave permission for surgeons to use her mother’s face, after a massive stroke had rendered Cheryl brain dead. Marinda, who lives in Boston, described the moment she first saw Carmen, after the face transplant. She’d been warned that Carmen wouldn’t look like her mother, but to Marinda, she did. They hugged, and Marinda touched her face. “I fell in love with Carmen there,” she said, “and I’ve never felt closer to my mom, too.”
• • •
Carmen suffered physical injuries that could easily have killed her. That she survived is remarkable in itself, but what seems even more incredible is how she has not just survived mentally, but developed into something else—something that by her own account is better. It’s that “psychological force,” which Pomohac is understandably reluctant to talk about, that I’m interested in.
Carmen told me she wouldn’t go back and change what happened: she’s grown too much. It’s a pattern I saw in other people as I was researching this chapter, and it’s something we’ll look at again in Chapter 11. People suffer an incredible trauma and find a way through it.
How do they do it? For physical trauma, it’s not so mysterious that some people survive. As Pomohac says, statistically, some people will just make it through. When they do, we’re so surprised we fixate on it, and may even call it miraculous. We remember these people, extraordinary survivors like Arizona Congresswoman Gabrielle Giffords, who was shot in the head in 2011. We don’t just shrug and say, well, it’s not impossible to survive even being shot in the head. Statistics aside, medical care is good and the body is capable of amazing repair—perhaps better than we might give it credit for.
But it is the mental resilience that is sometimes more impressive. Carmen told me that we get too caught up in negativity. You’ve got to take control and make your own choices. “I don’t live like the typical person on the inside at all,” she said. “I have different beliefs that help me go when I’m going.”
Some people can ride out trauma and even prosper, while others suffer lingering physiological stress and fear—the hallmarks of post-traumatic stress disorder. While I was at Brigham and Women’s Hospital I visited a psychiatrist to talk about this. David Wolfe is head of outpatient services at the evocatively named Building for Transformative Medicine. The funny thing, he told me, is that the people who suffer trauma but actually come out better aren’t the people who are studied. If someone is coping well, they’re sent home. Psychiatrists see the people who struggle. But perhaps, he said, people don’t suffer as much as we think.
“Psychiatry has been as guilty of this as anyone. You assume that if something bad happens to someone that they’re going to have some mental problem.”
We don’t look at it the other way around. For example, many people may have had abusive situations in their childhood, yet most of them turn out fine. It’s human nature, Wolfe said, to project—to assume that there must be something bad to come out of horrifying events. “It happens when we see patients in hospital with very serious diseases. We think ‘they must be depressed—wouldn’t you be?’ but actually they’re not.”
That’s not to say, of course, that people don’t suffer and don’t need treatment. According to the United States’ National Center for PTSD, seven or eight out of every hundred people will experience PTSD at some point in their lives (and more women than men are affected). Some 24 million people in the US right now may have symptoms. What Wolfe is saying is that it’s wrong to assume a traumatic event will be the same for everyone. More often than not it’s more impressive how well people cope with trauma, which makes sense from an evolutionary point of view: it’s advantageous to have hidden powers of resilience. “The ability to power through adverse conditions should be there in our DNA,” Wolfe said. “It’s more of a puzzle why, from an evolutionary standpoint, we have problems with that sometimes.”
• • •
After a few minutes chatting with Alex Lewis, I honestly don’t notice that his lips have been replaced by an oval patch of skin harvested from his shoulder. It’s my Homer Simpson face, he says. The skin puts on fat faster than the rest of his face, so he can easily tell if he’s getting fat, as his mouth gets chubby. It’s certainly a distinctive and unusual look, not to mention that he is a quadruple amputee, but as I’m talking to him, I notice that while I’m looking in his eyes, my brain fills in his lower face with normal lips—it assumes he has normal lips. When I deliberately shift my glance and look directly at his mouth, the Homer face pops back. But generally I don’t notice. I also don’t notice because he’s such an affable, normal bloke and it feels very natural chatting with him over a cup of tea in his kitchen. He drinks his with a straw.
In 2013 Alex, then thirty-three, was living with his partner, Lucy Townsend, and their young son, Sam, running a pub in Hampshire. For an easygoing man who liked a drink, it wasn’t the best situation.
“I’d be cleaning the lines in the pub and trying all the beers at ten in the morning. Then what do you do after that? People come to see you—you have a drink. Someone else drops in at two o’clock, someone at three—all the way through to kicking out at three in the morning. Every single day. It became the norm. But it shouldn’t have been going on.”
It didn’t really bother him, despite Lucy having a go at him about his horizontal ways. As he puts it now, he was in something of a rut—actually more a booze-soaked trough. “I could easily put away twelve, fourteen pints and two bottles of wine, then wake up and do it again. I didn’t feel like I was losing it.”
In November that year he had what he thought was a cold or a sore throat. It developed into something like the flu, but then there was blood in his urine; a purple rash spread across his body. His fingers started to feel weird—he couldn’t button his shirt. On the morning of November 17, he says, he remembers Lucy coming back to the pub and banging on the door—it was locked and he had the key on the inside. As he came down the stairs he collapsed. “I lost all function, all cognitive ability.”
As he lay there, completely out of it, Lucy and her father pried open the door and called an ambulance—which was local, so it luckily arrived in five minutes. He was rushed to Winchester Hospital.
He was slipping in and out of consciousness that day as the medics tried to stabilize him. He had sepsis, an immune condition triggered by infections that causes the body to attack its own organs. But what was the underlying cause? One doctor thought he might have Weil’s disease. Finally, at about ten that night, he was diagnosed correctly by a doctor who had seen the disease before.
The “flu” was in fact an infection of the streptococcus A bacterium. We all have these bacteria, living on our skin and in our bodies. If they get out of control they cause sore throats and pneumonia, but sometimes, rarely, they can develop into a serious infection called necrotizing fasciitis. This being too medicalized a term for people to deal with, it’s often called “flesh-eating disease.”
This is what Alex had. By then his kidneys were failing and he was close to death. The team in the intensive care unit told Lucy and Alex’s mother that if Alex didn’t rally by the morning, they’d wake him for good-byes and take him off life support. His doctor that evening, consultant anesthetist Geoff Watson, gave him a 3 percent chance of surviving, but overnight he tried something unorthodox, and it saved his life. (Watson has never told Alex exactly what it was that he did, possibly because of its unorthodox nature.)
That was only the beginning. Things moved rapidly. Alex was moved to Salisbury Hospital, which has specialists in amputations and plastic surgery. The strep had penetrated deep, especially into Alex’s left arm. Consultant surgeon Alexandra Crick came to see him. Alex greeted her. He said he was very polite, and he asked her how she was doing. The surgeon told him, “Well, you’re going to lose your left arm and maybe your feet,” turned around, and she was gone.
“I’m lying there thinking, ‘fucking hell, that was a bit harsh.’ ” Soon, however, he grew to understand why Crick’s manner is like that. Quite often people with his condition die, and doctors have to stay detached, to a certain extent, from their patients. It doesn’t mean they don’t care, but it means they can give the right care. “And you can’t dress it up,” Alex says. “You have to give the patient accurate information, so they don’t start dreaming up things that might happen.” He came to respect Crick’s skill, and now he says there’s no one he admires more than Alex Crick. He’s had more than a hundred hours of surgery in three years. She says she will maintain a doctor–patient relationship with him for the rest of their lives.
Crick’s initial, brutal assessment was correct. He did indeed lose his left arm—and both legs above the knee. “It was such a quick thing,” Alex recalls. He began a long period of recuperation, and this is where his relaxed nature paid off.
“I just came out of it with a clear head and a clear idea that I was going to get better—not start again, but not be engulfed in grief and resentment and ‘why me’ and all that.”
His outlook—remarkably similar to Carmen Tarleton’s “take responsibility for my life” attitude—was now a massive help to him. “I was always a very easygoing guy. Even if I was drinking heavily, people would always say they could never tell when I was drunk. I never changed from twelve in the afternoon to two in the morning. I was placid; I didn’t get stressed very easily.” What had kept him in a rut before, the go-with-the-flow complacency, now allowed him to let his limbs go without tearing himself up inside. And he found within himself a positivity and a strength that he didn’t know was there.
There was no sign of this resilience in Alex’s life before he became ill; he wasn’t a particularly tough child, nor did he show signs of inner strength before the strep. There’s nothing he can recall. “You don’t really know what you’ve got within you until you plunge into the depths.” Carmen had said the same thing. She was a registered nurse and was raising kids, but until her incident, she said she’d not thought about the big questions of life. “I wasn’t going to sit around and complain and cry.”
For Alex, obviously it’s not all been an upward trajectory since the strep hit him. The worst blip, if you can call it that, was losing his right arm. The surgeons had rebuilt it, and Alex showed me photos of the pioneering operation. The arm was butterflied open from wrist to shoulder, and the strep-ridden diseased flesh scooped out. It was filled in with muscle from his shoulder and stitched up again. But a few months later he rolled over on it in bed and it snapped. “I sat up in bed and my hand was flopping down.”
The strep had gone into the bone—and the arm had to be amputated.
Despite everything—and this part of the story seems incredible, unbelievable—he feels thankful, overall, for what happened to him. He sees his life as changed for the better. You could be skeptical and insist, well, he would say that because what other choice does he have, but I believe him. Other people he’s met during his treatment and rehab haven’t been able to respond in that way. People like Alex and Carmen surprise you.
Alex says he and Lucy were very clear from the beginning that she wasn’t going to be his carer. They now maintain lives that aren’t solely centered on his disability. She runs a pub (The Greyhound on the Test, in Stockbridge, a different one from where Alex fell ill) and Alex runs an interior design business, and they have the Alex Lewis Trust, which campaigns and fundraises for Alex’s care and prosthetics, as well as for other amputee charities. Through the Trust he’s skydived over Wiltshire and kayaked under the northern lights in Greenland. “I live an incredibly satisfying life,” he says, “born out of the strangest circumstance.”
He says the attitude he has now was hidden away somewhere. “I didn’t think I had it. When I came out of hospital, all of a sudden I’m doing things, accepting things.” His attitude now is that if he doesn’t say yes to any opportunity that comes his way, he’ll never know if he’s going to enjoy it, or if it’s something his son Sam might want to do in the future. “We traveled the length and breadth of the country and abroad and we’re where we are now because of a shift in attitude. I look at everything in a different way.”
He’s firm that, overall, what happened to him was positive. “I think it is good. If I’d have carried on in the vein I was going, I was at risk of losing my family—losing Lucy, being a single father, not seeing Sam. The prospect of that frightens me more than anything else. And I think the strep did me a favor to give me a bit of breathing space to get my head straight, then come out.”
• • •
No one does things like this alone. I’m not now talking about the amazing surgeons and medics who saved and rebuilt the lives of Carmen and Alex, but the friends and family who rally round. Your social network is key to how you deal with trauma. “People who respond well tend to have positive relationships in their life and that translates into positive relationships with their treatment teams,” says David Wolfe.
When Alex was ill, word spread and people started coming into the pub asking how he was. (All that drinking had paid off.) “All of a sudden people were leaving five hundred quid tips. It became obvious that I had this huge support network, through the pubs, all the people we’d met in the industry.”
The Alex Lewis Trust was born in order to do something structured with the large sums of money that were coming in.
Alex had Lucy, and his family, and his friends. His best friend Chris flew over regularly from his ski-instructor job in Courchevel, France, to help him. Chris has been a massive help. As the time drew close for Alex to leave the hospital and move home, he became concerned about how it was going to work—in the hospital there were staff, sometimes four at a time, to winch him in and out of his wheelchair when he needed the bathroom. How was he going to cope at home? His reconstructed mouth opening at the time was big enough to fit a one-pence coin—how was he going to adapt things so he could live and eat at home? Simple things like cups and forks weren’t right for Alex now. Chris said he’d come and live with him for the first six months. (Let’s take a moment here to acknowledge Chris’s awesome powers of friendship.) “Without him being there I wouldn’t have progressed as quickly as I did,” says Alex. “It just meant we were adapting things as we went. Progression was always there.”
Similarly, one of Carmen’s sisters moved to Boston so she could see her every day while she recovered, even before she came out of the coma. When Carmen left the hospital, years before the face transplant, she went to her family. She saw a therapist for a while after she was attacked, but she says her experience was so far off the chart that nobody knew what to say to her. “I cried at my sister’s and my mother’s and bitched a little, and after a year and a half I thought, that’s not going to help me.”
Optimism, not surprisingly, is one of the character traits shared by people who respond well to trauma. “The opposite is hopelessness, which is a feature of depression,” says Wolfe. “Engagement, taking it on, taking on responsibility, and being active in the process—these things go a long way.”
When you ask people what keeps them going, Wolfe says, the number one answer is family and kids. People who are resilient look to the future—it’s like we saw when looking at longevity, like we saw with Ellen MacArthur when considering focus. Successful people have goals and work toward them. I’m reminded of Carmen again. She had a clear goal: “I needed to find a way through this, because I wasn’t going to go anywhere. I was raising children, there were things I wanted to do. My biggest motivation was I wanted to be a role model to my daughters.”
Until now, we’ve only been talking about people’s emergent traits, their personalities, their attitudes, their outlook on life. Let’s now go deeper into biology and look at what we know about the genetics of resilience.
• • •
Jason Bobe points to a poster on the wall of his office. We’re in the department of genetics and genomics science at the Icahn School of Medicine at Mount Sinai Hospital in New York. It’s high up on Lexington Avenue and sirens wail from the street below.
“One of the tendencies of being in a genomics department is to think the cause and the solution to every condition is genetics,” he says. The poster—a huge, detailed pie chart titled Determinants of Disease—is his way of addressing that tendency. A chunk of the pie, about a third, is taken by genetics. But then there is a bigger slice, some 40 percent, taken by behavior. There are slivers of various sizes for medical care, environment, social circumstance, and within each slice there are subslices and annotations picking out risk factors such as obesity, stress, nutrition, and, where appropriate, known genetic factors. It’s a complicated, detailed chart. The message is that genetics and biology are a major determinant of health, but there are many other reasons why people get sick.
“You could rename this Determinants of Resilience,” says Bobe. Our ability to be protected against insults to our health, he explains, could be due to biology, medical care, environment, behavior, or social circumstances. “That’s the big picture I want to situate this project in.”
That said, Bobe is part of a project that is squarely set up to identify people with some sort of genetic protection against disorders: “We typically study disease by looking at the people who have the disease. But there is a whole group of people we’re missing—people who have the serious risk factors for the disease, but don’t get sick, or have only mild symptoms.”
The idea of the Resilience Project is to identify these people. If we find them—Bobe calls them genetic superheroes—studying them could lead to new therapies or new methods to prevent disease.
There are some famous examples. Their stories are inevitably poignant, if not tragic, since they are often discovered in the midst of disease, surviving where others die.
Steve Crohn was a New Yorker who, as a gay man, lived through the full horrors of the emerging AIDS epidemic in the 1970s and 80s. He saw people die around him, years before the virus was identified. When it finally was, he assumed he’d also caught the disease; certainly he’d been exposed to it countless times. He cast around for a doctor to explain this, and finally wound up at the lab of a young virologist at the Aaron Diamond AIDS Research Center, Rockefeller University. This was in 1994.
The virologist was Bill Paxton, now at the University of Liverpool, who had put a call out for gay men apparently immune to AIDS. He soon found that Crohn’s cells were immune to HIV. Paxton exposed the cells to three thousand times the amount of HIV that usually causes infection, but the cells shrugged it off. Quite literally, it turns out—HIV enters specialized white blood cells called CD4 cells via a molecule called CCR5 on the surface of the cell. Crohn had a mutation, which meant he lacked CCR5, so the virus simply couldn’t get a purchase on the cell. Crohn’s variant—now known as the delta 32 mutation—led to the development of maraviroc, a drug which blocks the CCR5 receptor. Understanding what Crohn’s variant did has also helped in developing strategies to cure HIV. Crohn, however, killed himself in 2013.1 He was immune to HIV, but not to its tragedy, the Los Angeles Times noted.
Then there’s Doug Whitney, from Port Orchard, Washington. Doug’s mother developed early-onset Alzheimer’s, a form of the disease caused by a single genetic variant, when she was fifty. As is sadly all too often the case, she died not long after. Nine of his mother’s siblings also died, and the disease killed Doug’s older brother at fifty-eight. Doug, naturally, braced himself for the onset. But it didn’t happen. It still hasn’t—he’s now sixty-eight, way past the age this form of dementia normally shows itself.
Thinking he’d dodged the genetic bullet, a few years ago Doug had himself tested, only to find he did in fact have the gene for familial Alzheimer’s. It can only mean that something else in his life or in his genome is protecting him from what otherwise is inescapable.
Bobe calls these cases “inflated airbags.” It’s the opposite of a smoking gun—if you’re trying to solve a crime, the presence of such a weapon is evidence that a bullet has been fired. In genetic medicine the smoking gun is like finding you have a gene for a major disease. But in resilience they’re looking for the inflated airbag—a protective factor that has been deployed and has saved you from disease. In Steve Crohn’s case the airbag was the delta 32 mutation.
Whitney, too, has an airbag, but we haven’t identified it yet. And herein lies the scientific challenge. To understand why, let’s look at a paper Bobe published in 2016, in collaboration with some thirty scientists from around the world.2
The paper, in the journal Nature Biotechnology, is an analysis of genetic data from more than half a million people. The collaborative approach allowed the scientists to share genetic data from twelve different studies. This is important because it allowed them access to samples from 589,306 healthy people. Healthy people aren’t usually the ones who turn up in genetics studies.
The scientists then combed through the data, focusing on 188 areas in the genome where there are known disease-causing mutations. They were interested in what are called Mendelian diseases: diseases that are caused by a single damaged gene. Cystic fibrosis is an example. The team identified 15,597 people who carried a mutation. Remember, these are samples from healthy people. It’s like what Paxton did when he put out a call for people apparently immune to HIV, except it draws on the greater analytical power of genomics.
These nearly 16,000 people were then assessed more rigorously to ensure the genetic data were reliable, that they really did carry a disease gene, and that they really were symptom free. This whittled the number down to just thirteen people. Thirteen unexpected heroes with a secret power—protection from otherwise severe genetic disease.
The thirteen have dangerous mutations—for diseases such as cystic fibrosis, Smith-Lemli-Opitz syndrome, which causes learning difficulties, and a disorder called Pfeiffer syndrome. This latter is a condition in babies where the bones in the skull fuse. The brain grows inside the skull but the bones can’t grow to accommodate it. (I’ve seen a baby with this terrible syndrome, and watched the operation to relieve the pressure in his head. As you might imagine, it involves sawing gaps in the fused skull. The surgeon told me the pressure becomes so great inside the skull that the poor child’s eyes can pop out of their sockets.3) These are gruesome and often fatal diseases, but something in the thousands of other genes these thirteen people carry is protecting them.
We visualize genes as beads on a string—or I do, at least. But that massively underplays how complicated they are, and how long the string is. Genes are more like trains on a railway track. To find the protective genes using Bobe’s approach—to find the airbags—will require even larger data sets, which is why I mentioned the collaborative approach they are adopting. They’ll need even larger samples to find more unexpected heroes and to find how they’re protected. This is what they’re doing—the Resilience Project, run out of Mount Sinai in collaboration with Sage Bionetworks based in Seattle, Washington, is aiming to get sequence information from one million healthy people. They’ll then comb through the vast amount of data looking for the tiny changes that might protect certain individuals.
There is another way. Instead of searching for rare genes in a diverse population using huge numbers of people—Bobe’s approach—you could look for them in much smaller groups of genetically similar people.
You know the places where everyone knows everyone and going there is like stepping back in time? Think of somewhere like that, then make it even more remote in time and space. Say, an isolated mountain village on the island of Crete, or a group of Old Order Amish in Pennsylvania, or an Inuit village in Newfoundland. These places don’t tend to have a lot of new genes coming in from outside. It means there is less genetic diversity in the group, so rare genes may be present at a higher frequency than normal, and therefore easier to find. It’s why the music-gene hunters we met in Chapter 6 went to Mongolia.
This has been the approach of Eleftheria Zeggini, of the Wellcome Trust Sanger Institute just outside Cambridge, UK. She studies isolated populations in Crete, Pennsylvania, and Newfoundland.
“The villagers in Crete have lamb for breakfast, lunch, and dinner,” says Zeggini. Their diet is incredibly high in animal fat, and sure enough, the people there become obese and get type II diabetes at the same rate as the general Greek population. But they don’t suffer the medical complications usually associated with diabetes. The villagers instead are known for their good health and long lives. Suspecting there might be protective genetic factors at play—inflated airbags, in Bobe’s phrasing—Zeggini moved in and collected as much information as she could from the villagers, including medical information such as blood pressure, blood samples to measure fat content, questionnaires on diet, and DNA samples.
In a telling illustration of how quickly genomics has moved in the fifteen or so years since the first laborious and expensive sequencing of the human genome, Zeggini’s team simply went ahead and sequenced the total DNA content of more than 1,500 villagers. (Bear in mind that the original human genome project took a decade and $3 billion to complete—at the Sanger Institute they can process a complete genome in about thirty minutes.)
By analyzing all the information, Zeggini found that the villagers tended to have three rare gene variants that are either absent from the general Greek or European population, or present at a much lower frequency. These variants are associated with cardioprotection: people with the variants process fat more efficiently than normal. “That’s interesting because we know their diet is bad, but that they don’t die at the rate you’d expect,” she says.
What’s also funny—in a good way—is that one of these variants popped up in the Amish population Zeggini studies. They too have a diet that is high in animal fat. If she had done the study on the cosmopolitan British population, with all its mass of genetic diversity, she would have needed to sequence 70,000 people to get the statistical power necessary to find the variants.
• • •
Scientists such as Bobe and Zeggini are at the forefront of the search for the factors that cause and protect against disease. Note that I said factors, not genes. It’s not just genes. As Bobe told me in his office, there are many reasons people get sick. Even when we find genes related to disease, it rarely works on the basis that “you have the gene, you’ll get the disease.” Sure, there are the Mendelian diseases mentioned above, such as familial Alzheimer’s or cystic fibrosis, where you almost always do get the disease if you have the gene, but most diseases, and almost all traits, are far more complex, and are influenced by many genes. Resilience itself being one such complex trait.
“How can I make myself and my family more resilient to disease? That’s what I’m trying to do,” Bobe says. “We’re trying to systematically study that.”
Some of these things you can teach. Ann Masten, a psychologist at the Center for Neurobehavioral Development at the University of Minnesota in Minneapolis, calls the power of resilience “ordinary magic.”4 It is magic that anyone can use. John Humphreys, the war hero we met in the last chapter, said he thought he was born with a positive character, but this sort of thing can make people uncomfortable. It’s not a big step from that to blaming people who aren’t relentlessly positive for their outlook on life. But far from it. Nimmi Hutnik’s team at London South Bank University says resilience—although a complex mix of biology, psychology, and environment—has the potential to be taught. Pharmaceutical interventions to extend healthspan are being developed, but until then, it’s worth noting that exercises in mental resilience can be learned, and can be used to promote health and well-being.
The capacity to be super resilient may be there even in us normal people, but we need guidance and support to find it, maybe from psychotherapy, maybe from friends. We need help to be optimistic, encouragement to take control, and empowerment to be responsible. We need a certain amount of self-love. A touch of narcissism is good! We need to stand up for ourselves so we are not mistreated at work or in relationships, we need to be assertive without devaluing others, and have a self-image that is positive without being conceited. This mixture of personality traits will drive you forward. Some of them can be constructed, if you do not have them naturally.