One way of finding new links between genes and diseases is to sequence a patient’s exome. Photo: Getty
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DIY diagnosis: how an extreme athlete uncovered her genetic flaw

When Kim Goodsell discovered that she had two extremely rare genetic diseases, she taught herself genetics to help find out why. Ed Yong tells her story.

Kim Goodsell was running along a mountain trail when her left ankle began turning inward, unbidden. A few weeks later she started having trouble lifting her feet properly near the end of her runs, and her toes would scuff the ground. Her back started to ache, and then her joints too.

This was in 2002, and Kim, then 44 years old, was already an accomplished endurance athlete. She cycled, ran, climbed and skied through the Rockies for hours every day, and was a veteran of Ironman triathlons. She’d always been the strong one in her family. When she was four, she would let her teenage uncles stand on her stomach as a party trick. In high school, she was an accomplished gymnast and an ardent cyclist. By college, she was running the equivalent of a half marathon on most days. It wasn’t that she was much of a competitor, exactly – passing someone in a race felt more deflating than energising. Mostly Kim just wanted to be moving.

So when her limbs started glitching, she did what high-level athletes do, what she had always done: she pushed through. But in the summer of 2010, years of gradually worsening symptoms gave way to weeks of spectacular collapse. Kim was about to head to Lake Superior with her husband, CB. They planned to camp, kayak, and disappear from the world for as long as they could catch enough fish to eat. But in the days before their scheduled departure, she could not grip a pen or a fork, much less a paddle. Kim, a woman for whom extreme sports were everyday pursuits, could no longer cope with everyday pursuits. Instead of a lakeside tent, she found herself at the Mayo Clinic in Rochester, Minnesota.

After four days of tests, Kim’s neurologist told her that she had Charcot–Marie–Tooth disease, a genetic disorder that affects the peripheral neurons carrying signals between the spinal cord and the extremities. It’s rare and carries a varying suite of symptoms, but Kim’s are typical, starting at the feet and heading upward. The neurologist explained that as her neurons died, the surviving cells picked up the slack by sprouting new branches – a workaround that masked the underlying degeneration until the rate of cell death outpaced the rate of compensation. Hence Kim’s crash.

The neurologist told her to come back in a year so he could check how quickly the disease was progressing, but that it would certainly progress. Charcot–Marie–Tooth has no cure.

The Goodsells drove home and Kim, exhausted, slept for two days. When she woke up, she got to work. “My reaction to things that I have no control over is to find out as much as I can about them,” she says. She started by reviewing her clinic notes, and quickly noticed something odd: there was hardly any mention of her heart.

Years before she learned that she had Charcot–Marie–Tooth, Kim discovered that she had another genetic disorder – one that affects the heart, arrhythmogenic right ventricular cardiomyopathy (ARVC). ARVC gradually replaces the heart’s synchronised beating muscle with fat and scar tissue. It nearly killed her once; she still has an internal defibrillator to keep her heart beating. But even though it was there in her medical records, her neurologist hadn’t seen fit to mention it in his report. “It meant nothing to him,” says Kim. “I thought: Wow, that’s really funny.”

It wasn’t the omission per se that bothered her. It was the implicit suggestion that her two life-long diseases – one of the heart, one of the nervous system – were unrelated. That, in the genetic lottery, she was a double-loser. That lightning must have struck her twice.

Surely not, she thought. Surely there must be a connection.

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I meet Kim at La Ventana in Baja California, Mexico. She spends winters here, mostly kitesurfing. The sand and water are postcard-quality, but La Ventana has barely any resorts or big hotels. So in the still air of the morning when kites won’t fly, the beach is empty. Kim likes it that way. She has been up since dawn, cycling among the cacti and swimming in the ocean with pelicans and frigatebirds for company. She hauls herself out of the water, dries off, and sits on a small terrace overlooking the ocean. Her face is tanned and wrinkled, and she manifests no obvious signs of her two conditions. That’s partly because she has developed workarounds to mask and control her symptoms. She brushes her teeth on one foot to offset her balance problems. She uses massage balls and spends hours stretching to stop her muscles and joints from seizing up.

“See how I’m sitting?” she says. She has pulled her legs up on the chair to her left, and her back is curving that way too.

“My spine curves this way” – she nods to the right – “so I sit curving to the opposite side. I consciously do the opposite.”

She has a history of that. In 1979 Kim was a mathematically gifted pre-med student at UC San Diego, her hometown college. Her path was clear: graduate, and follow her older brother into medical school. But on a trip to South America – her first time out of San Diego – she ended up hiking for three months instead of working at a clinic as she’d planned. When she returned home, her academic future seemed pale and uninspiring. And then CB – her future husband, at this point a fellow student and regular running partner – started taking her out on wilderness hikes. “He introduced me to the mountains and I thought: this is life,” Kim says.

Within months of graduating Kim dropped out. Her brother, who had been a father figure to her growing up, was furious. “We hardly spoke. CB was his friend and he couldn’t even look at him,” she says. “He said I was being completely irresponsible.” Kim and CB married in 1983, and aside from a brief stint as restaurant owners, they have never had 9-to-5 jobs. They mostly earned a living by buying and remodelling run-down houses and selling them at a profit, and then heading into the wilderness until their supplies ran out. In 1995 they found themselves in La Jolla, California, working on an especially stressful renovation that left Kim drained.

That was when her heart problems began. Kim started having episodes of ventricular tachycardia – the lower chambers of her heart contracted so quickly that they pumped out their contents before they had a chance to fill up, compromising the flow of blood (and therefore oxygen) to the rest of her body. One minute she would be racing down Highway 1 on her bike; the next she would feel like she had been “unplugged”, as if “there was nothing driving anymore”. A cardiologist at Scripps Memorial Hospital told her she’d need an internal defibrillator, but Kim said no – she was worried it’d get in the way of wearing a backpack on a run, and she had faith that she’d be able to deal with the ventricular tachycardia by slowing down and relaxing. “I didn’t want something implanted in me that would limit my opportunities of experiencing life,” she says.

The next week, the Goodsells finished their renovation, packed up and headed into the Sierra Nevada with no return date in sight. It was an unorthodox solution to a life-threatening heart condition: to vanish into the boondocks, far away from any medical care, to do even more exercise.

The thing is, it was the right one. The outdoors rejuvenated her. She was gone for one-and-a-half years, and her heart behaved the whole way through. That unbroken streak only broke when the Goodsells rejoined their old lives in 1997. Back in California, they were once again cycling down Highway 1 when her heart started to beat erratically again. This time, it did not stop.

By the time the paramedics arrived, Kim was slumped against a wall and her chest was shaking. Her tachycardia had lasted for almost an hour and progressed to ventricular fibrillation – that is, her heartbeat was erratic as well as fast. She blacked out in the ambulance, on the cusp of cardiac arrest.

She woke up at Scripps Memorial Hospital. The same cardiologist was there to greet her. Through further tests he discovered that the muscle of her right ventricle was marbled with fat and scar tissue and not contracting properly. These are classic signs of ARVC. It had only been properly described in 1982, back when Kim was regularly signing up for triathlons. ARVC is a major cause of fatal heart attacks in young people, and athletes are especially vulnerable as exercise can accelerate the disease’s progress. And since Kim wouldn’t stop exercising, she finally conceded to the defibrillator. They implanted it the next day.

Kim referred to the implant as her “internal terrorist”. Every shock was debilitating and led to months of anxiety. She had to learn to cope with the device, and it took several years to regain the joy she drew from hardcore exercise. That was when the other symptoms started.

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These diseases are rare. In a crowd of a million adults, around 400 will have Charcot–Marie–Tooth and between 200 and 400 will have ARVC. But genetic diseases in general are actually quite common – 8 per cent of people have at least one. This paradoxical combination has fuelled the rise of many online communities where people with rare disorders can find each other. Heidi Rehm, a geneticist at Harvard Medical School, studies a condition called Norrie disease that mostly affects the eyes and ears. She developed a registry for Norrie disease patients to share their experiences, and learned that almost all the men with the disease had erectile dysfunction. “A patient goes to their doctor with blindness and deafness, and erectile dysfunction isn’t the first thing you ask about!” says Rehm. “Patients drove that discovery.” Through communities, families often make connections about their medical problems that their doctors miss.

But Kim was never one for relying on others. She tried a support group when she got her implant, but it did nothing for her. She dipped her toes in patient forums, but was always frustrated by the rampant misinformation. “People just weren’t interpreting things correctly,” Kim says. “I wanted more rigour.”

She started by diving into PubMed – an online search engine for biomedical papers – hunting down everything she could on Charcot–Marie–Tooth. She hoped that her brief fling with a scientific education would carry her through. But with pre-med knowledge that had been gathering dust for 30 years and no formal training in genetics, Kim quickly ran headfirst into a wall of unfamiliar concepts and impenetrable jargon. “It was like reading Chinese,” she says.

But she persisted. She scratched around in Google until she found uploaded PDFs of the articles she wanted. She would read an abstract and Google every word she didn’t understand. When those searches snowballed into even more jargon, she’d Google that too. The expanding tree of gibberish seemed infinite – apoptosis, phenotypic, desmosome – until, one day, it wasn’t. “You get a feeling for what’s being said,” Kim says. “Pretty soon you start to learn the language.”

“Kim has an incredible ability to understand the genetic literature,” says Martha Grogan, a cardiologist from the Mayo Clinic and an old friend of CB’s who now coordinates Kim’s care. “We have a lot of patients who ask great questions but with Kim, it’s like having another research fellow.”

At the time the Goodsells were staying at a friend’s house at Lake Michigan. Kim would sit on the balcony for eight hours a day, listening to the water and teaching herself genetics. Too weak to explore winding hillside trails, she channelled her perseverance and love of isolation towards scientific frontiers and the spiralling helices of her own DNA. “I spent hundreds of hours,” she says. “CB lost me during this process.”

Kim looked at every gene linked to Charcot–Marie–Tooth – there are more than 40 overall, each one imparting a slightly different character to the disease. One leapt out: LMNA, which codes for a group of rope-like proteins that mesh into a tangled network at the centre of our cells. This ‘nuclear lamina’ provides cells with structural support, and interacts with a bunch of other proteins to influence everything from the packaging and activation of genes to the suicide of damaged cells. Given this central role, it makes sense that mutations in LMNA are responsible for at least 15 different diseases, more than any other human gene. These laminopathies comprise a bafflingly diverse group – nerve disorders (like Charcot–Marie–Tooth), wasting diseases of fat and muscle, and even premature ageing.

As Kim read about these conditions and their symptoms, she saw her entire medical history reflected back at her – the contracted muscles in her neck and back, her slightly misaligned hips and the abnormal curve in her spine. She saw her Charcot–Marie–Tooth disease.

She also saw a heart disorder linked to the LMNA gene that wasn’t ARVC but which doctors sometimes mistake for it. “Everything was encapsulated,” she says. “It was like an umbrella over all of my phenotypes. I thought: This has to be the unifying principle.”

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Kim was convinced that she had found the cause of her two diseases, but the only way to know for sure was to get the DNA of her LMNA gene sequenced to see if she had a mutation. First, she had to convince scientists that she was right. She started with Grogan, presenting her with the findings of her research. Grogan was impressed, but pragmatic. Even if Kim was right, it would not change her fate. Her implant was keeping her heart problems under control, and her Charcot–Marie–Tooth disease was incurable. He didn’t see a point. But Kim did. “I wanted to know,” she says. “Even if you have a terrible prognosis, the act of knowing assuages anxiety. There’s a sense of empowerment.”

In November 2010 Kim presented her case to Ralitza Gavrilova, a medical geneticist at the Mayo Clinic. She got a frosty reception. Gavrilova told Kim that her odds of being right were slim. “I got this sense that she thought I’d made an unfounded shot in the dark,” says Kim. “That I didn’t understand the complexity of the genome. That I had been reading the internet, and they come up with all sorts of things there.”

Gavrilova pushed Kim towards a different test, which would look at seven genes linked to ARVC. Her insurance would cover that, but if she insisted on sequencing the DNA of her LMNA gene, she would have to foot a $3,000 bill herself. Why waste the money, when it was such an unlikely call? But Kim was insistent. She knew that the known ARVC genes explain only a minority of cases and that none of them was linked to neural problems. In all her searching she had found only one that covered both her heart and nervous problem. Eventually, Gavrilova relented.

Kim, meanwhile, disappeared down to Baja in Mexico. Gavrilova’s scepticism had worn her down and she fully expected that the results would come back negative.

When she returned home in May, there was a letter waiting for her. It was from Gavrilova. She had been trying to call for months. The test had come back positive: on one of her two copies of LMNA Goodsell had a mutation, in a part of the gene that almost never changes. LMNA consists of 57,517 DNA ‘letters’, and in the vast majority of people (and most chimps, monkeys, mice and fish) the 1,044th position is filled by a G (guanine). Kim had a T (thymine). “All evidence suggests that the mutation found in this patient might be disease-causing,” Gavrilova wrote in her report.

In other words, Kim was right.

“I’m beyond impressed,” says Michael Ackerman, a geneticist at the Mayo Clinic. He specialises in inherited heart disorders like ARVC that can cause sudden death at any time. Such diseases make for people who do their homework, but Ackerman describes most as “Google-and-go” patients who check their diagnosis online, or read up about treatment options. Kim had written up her research as a white paper – 36 pages of research and analysis. “Kim’s the only one who handed me her own thesis,” he says. “Of all the 1,000-plus patients I’ve taken care of, none have done extensive detective work and told physicians which genetic test to order.”

He thinks she nailed it too. It is unlikely to be the whole story – Kim almost certainly has other mutations that are affecting the course of her disease – but LMNA “is certainly the leading contender for a unifying explanation, without there being a close second,” he says. “The evidence is pretty good for this being a smoking gun.”

The test had vindicated her hypothesis, but it also raised some confusing questions. Heart problems are a common feature of laminopathies, but those mutations had never been linked to ARVC, Kim’s specific heart malfunction. Had she been misdiagnosed? A few months later, Kim stumbled across a new paper by a team of British researchers who had studied 108 people with ARVC and found that four had LMNA mutations (and none of the standard ones). “To the best of our knowledge, this is the first report of ARVC caused by mutations in LMNA,” they wrote. They didn’t know about Kim’s work – they couldn’t have, of course. But she knew. Kim had beaten them to it. “I was so excited, I was running up and down the beach,” she says.

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When patients get solutions to their own genetic puzzle, it’s always professional geneticists who do the solving. Take James Lupski. He has been studying Charcot–Marie–Tooth for decades, and discovered the first gene linked to the condition. He also has it himself. In 2010 he sequenced his own genome and discovered a previously unidentified mutation responsible for the disease. In other cases anxious parents have been instrumental in uncovering the causes of their kids’ mysterious genetic disorders after long diagnostic odysseys, but only by bringing their cases in front of the right scientists.

Kim, however, was an amateur. And to her, sequencing was not a Hail Mary pass that would – maybe, somehow – offer her answers; it was a way of confirming a carefully researched hypothesis.

“People have been talking about empowering consumers since there was an internet,” says Eric Topol, a geneticist at the Scripps Clinic. “But finally, we’ve reached a point where someone can delve into their condition beyond what the top physicians at the Mayo Clinic could. They couldn’t connect the dots. She did.”

Topol, a self-described “digital medicine aficionado”, argues that Kim is a harbinger of things to come. In his book The Creative Destruction of Medicine, Topol foretells a future where doctors are no longer the gatekeepers of medical information. Advances like personal genetic testing or sensors that measure molecules in the blood will give patients the power to better understand themselves and to exercise more control over their healthcare. Medicine is becoming more democratic.

Kim is a vanguard of that change. She lacked academic knowledge, but she had several advantages over her physicians and other researchers in the field. She had detailed first-hand knowledge of her own symptoms, allowing her to spot connections in the scientific literature that others had missed. She could devote hours to learning everything about her niche disorders – time and focus that no clinician could reasonably spend on a single case. And she had unparalleled motivation: “There’s nothing that engages your curiosity more than being confronted by your death,” she says.

It is also becoming ever easier for that curiosity to lead to discovery. In the past geneticists would try to diagnose patients by looking at their medical history and deciding which genes might be worth sequencing, as Gavrilova tried to do for Kim. The approach makes sense, but it only ever confirms known links between genes and diseases.

One way of finding new links is to sequence a patient’s exome – the 1 per cent of their genome that contains protein-coding genes. It’s cheaper than sequencing a full genome, but allows researchers to hunt for disease-related genes by interrogating every possible suspect simultaneously, without having to whittle down the list first. “Suddenly, we’re finding patients presenting with Disease X who have mutations in genes never previously associated with that disease,” says Daniel MacArthur, a geneticist at Massachusetts General Hospital. “That’s happening in nearly every disease field right now.”

Exome sequencing is now barely more expensive than sequencing much narrower gene panels. MacArthur says that the cost has already fallen below $1,000 and may halve again this year. And once patients have that information, they could use it to find others with the same mutations and check if they have the same symptoms.

Currently, the results from DNA sequencing studies are largely squirrelled away in boutique databases that collate mutations for specific diseases or genes. The ironically named Universal Mutation Database covers mutations in only 34 genes, including LMNA. Broader ones exist, but for decades they have been incomplete, rife with mistakes, or inaccessible, even to other researchers – a sad state of affairs that MacArthur laments as the “single greatest failure in human genetics”. Now, though, the National Institutes of Health are developing an open database called ClinVar that covers all disease mutations. “A lot of us are putting our hopes on this,” says MacArthur. “We need to come up with resources that empower people to make surprising links, which is hard to do if the data are broken up by disease or gene.”

But for every Kim, there are others who research their own conditions and come up with wrong answers. In one study four non-specialist volunteers tried to diagnose 26 cases from the New England Journal of Medicine by Googling the symptoms. They got less than a quarter right. Genetic diseases arguably lend themselves to confusion and misinformation. They are often both debilitating and enigmatic, and getting sequenced can offer little comfort beyond a diagnosis. If mainstream science has no easy answers to offer, many patients will follow any lead, no matter how weak. “There’s a tendency for people to spin very convoluted stories on tenuous threads of evidence. Even scientists do that,” says MacArthur. “I have heard of a lot of rare-disease patients who come up with hypotheses about their disease, and very few turn out to be correct.”

Even Kim’s tale could have taken a different turn. Last year, a team from the Baylor College of Medicine sequenced the exomes of 250 people with suspected genetic disorders, and found that four of them had two diseases caused by mutations in different genes. In other words, Kim’s hunch about her two diseases sharing a common root could well have been wrong. Lightning does occasionally strike twice.

“We almost always have to spend time with patients decoding and recoding the impression that they’ve acquired about their disease from their own homework,” says Ackerman. Kim was an exception, he says, and her other physicians echo that view. She is unique. She is one-of-a-kind. She is extraordinary. High praise, but it conceals the implicit suggestion that she is an outlier and will continue to be.

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“Bullshit,” says Kim. “I hear this all the time: that I’m an exception. That the patient of the future is not going to do what I did.” She bristles at the very suggestion. “I almost take offence when I hear that what I’ve done is exceptional.”

We are talking over coffee at La Ventana. This is her fifth winter here, and she and CB have just celebrated their 30th wedding anniversary. CB leans back against a wall, quiet and contemplative. Kim sits forward, animated and effusive. She’s drinking decaf because of her heart, but it’s not like she needs the caffeine. “Take Rodney Mullen. He’s a real genius,” she says. Mullen is not a figure from science or medicine. He is, in fact, a legendary skateboarder, famous for inventing mind-blowing tricks that previously seemed impossible. One of them is actually called the ‘impossible’. “He executes these movements that defy reason, films them and publishes them on YouTube,” Kim says. “And inevitably, within a few weeks, someone will send him a clip saying: This kid can do it better than you. He gave that trick everything he had, he’s pulling from all of his experience, and here’s this kid who picks it up in a matter of weeks. Because he learned that it’s possible to do that. Rodney just acts as a conduit. He breaks barriers of disbelief.”

Her protestations aside, Kim is unique. Throughout her life she had built up a constellation of values and impulses – endurance, single-mindedness, self-reliance and opposition to authority – that all clicked in when she was confronted with her twin diagnoses. She was predisposed to win. Not everyone is. But as genetic information becomes cheaper, more accessible and more organised, that barrier may lower. People may not have to be like Kim to do what she did.

Kim isn’t cured. Her LMNA discovery offered her peace of mind but it did not suggest any obvious treatments. Still, she has made a suite of dietary changes, again based on her own research, which she feels have helped to bring her nervous symptoms under control. Some are generic, without much hard science behind them: she eats mostly organic fruit, vegetables, nuts and seeds, and avoids processed food. Others are more tailored. She drinks ginger tea because it thins the blood – she says that many people with laminopathies have problems with clots. Whether her choices are directly slowing the progress of her diseases or triggering a placebo effect, she is fit and happy. Her defibrillator hasn’t shocked her in months. And, of course, she still exercises constantly.

Up the hill from the beach we can see the little yellow house where she wrote the 36-page booklet that put together all her research. It convinced her doctors, yes, but it did even more. She showed it to her brother, now an anaesthesiologist, and it allowed them to reconcile. “It’s like I’ve finally done something worthy with my life,” Kim says. “He told me I’d done some really good research and that I’d missed my calling as a medical researcher. I told him I think I’ve been doing exactly what I needed to do.”

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Main references

A booklet by the British Heart Foundation that describes arrhythmogenic right ventricular cardiomyopathy (ARVC). 

An overview of Charcot–Marie–Tooth disease by the NHS.

The 2012 paper by the team of British researchers who studied 108 people with ARVC and found that four had LMNA mutations.

The 2008 study in which non-specialist volunteers tried to diagnose 26 cases from the New England Journal of Medicine by Googling the symptoms. [PDF]

Read the full article. This article was commissioned by Mosaic, a digital publication from the Wellcome Trust dedicated to exploring all strands of the science of life. It is reproduced under a Creative Commons Attribution 4.0 International Licence.

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The prophets of Trumpism

How the ideas of two pre-war intellectual refugees – the radical Herbert Marcuse and the reactionary Eric Voegelin – are influencing the new culture wars among Trump and his acolytes.

Even after Donald Trump’s more conciliatory address to Congress, American politics seems set to become a battle between the president’s joyless autocracy and a carnival of protest that could end up evoking the anti-war movements of the 1960s. There will be more draconian executive orders and more marches in pink hats. There may well be violence.

The intellectual battle that will be played out in the months and years to come, however, was foretold by two German refugees from Nazi persecution: Eric Voegelin, the doyen of Cold War reactionary conservatives, and Herbert Marcuse, the inspiration behind the revolutionary student activism of the 1960s. Voegelin argued that society needed an order that could be found only by reaching back to the past. Marcuse argued that refusal to accede to tyranny was essential to give birth to a revolutionary politics that would propel progress to a new kind of society. Marcuse the radical and Voegelin the reactionary could not seem further apart, and yet they share a common intellectual root in Germany in the 1920s, from which came a shared critique of modern society. Their ideas may well inspire some of the political conflicts to come.

The culture wars of the 1960s are very much alive for Trump’s acolytes. Steve Bannon, the former executive chairman of the alt-right website Breitbart News and Trump’s chief strategist, blames the counterculture of the 1960s – the drugs, the hippies, the liberal reforms – for America losing its way and, eventually, succumbing to economic crisis in 2008. Bannon set out his ideas in Generation Zero, a 2010 documentary which blamed the financial crash not on greedy, under-regulated bankers but on the moral and cultural malaise that started in the 1960s. He is still fighting people who might have been inspired by Marcuse. “The baby boomers are the most spoiled, most self-centred, most narcissistic generation the country has ever produced,” he told an interviewer in 2011.

Bannon’s thinking, set out in several speeches over the past few years, is that America’s working and middle classes have been betrayed by an elite in Washington, DC (the “Imperial City”, he calls it) which oversees insider deals so that the insiders can profit from global capitalism. Bannon wants to return America to traditions rooted in Judaeo-Christian values and to reassert national sovereignty. Most worryingly, on several occasions he has said that the crisis will only be resolved through the catharsis of conflict and national mobilisation through war.

America has always been a work in progress. Ronald Reagan and Barack Obama were very different presidents but they shared a belief that progress was America’s calling. The reactionary turn in US politics is not just a shift to the right but an attempt to displace progress as the common creed.

Instead, Bannon and his ilk want America to become a work in regress, as the historian Mark Lilla argues in his recent book on reactionary philosophy, The Shipwrecked Mind. Much of the new reactionary thinking echoes Voegelin’s idea that, in order to renew itself, a society must first go backwards to find where and how it lost its way.

 

***

Eric Voegelin defies easy categorisation. Born in 1901 in Cologne and brought up in Vienna, he was brave and principled. After a visit to the United States in the 1920s, he wrote two books criticising Nazi racial politics, which got him sacked from his teaching position at the University of Vienna. When the Germans arrived in Austria following the Anschluss in 1938, Voegelin and his wife fled on a train as the Gestapo ransacked their apartment.

After a brief stay in Switzerland, he moved to America and in 1942 took up an academic post at Louisiana State University. He then embarked on a prolific career, the centrepiece of which was his sprawling, multi-volume work Order and History.

Voegelin’s philosophy gave expression to the dark and powerful forces that had shaped his life. He believed that modern society was prey to flawed utopianism – he called this “gnosticism” – in which an elite of prophets takes power, claiming special insight into how heaven could be created on Earth for a chosen people. Gnostic sects in the Middle Ages had their modern equivalents in the Nazi proclamation of a racially pure utopia and the Marxist promise of equality for all. Voegelin’s catchphrase was: “Don’t immanentise the eschaton!” (meaning: “Do not try to build heaven on Earth”).

Marxism and Nazism, Voegelin argued, were political versions of religion: we get rid of God only to reinstall him in the form of an elite of reformers with all the answers. In his recent bestselling book Homo Deus, Yuval Harari argues that we are entering a new stage of the process that Voegelin identified. We have become as powerful as gods, he argued, but now need to learn how to be wise and responsible gods.

Today Voegelin’s attack on overreaching perfectionism echoes in reactionary criticism of Obamacare and in the yearning for national certitude. Voegelin thought the role of philosophy was not to change the world, but to understand its underlying order and help us tune in to that, rather than being diverted by the lure of the false prophets of political religion.

He was influenced by the Viennese satirist Karl Kraus, who said that “origin is the goal”, by which he meant that the point of the future was to restore the ancient past. For Voegelin, order comes from a sense of harmony, of everything being in its place. This is a position that opens itself up to deeply conservative interpretations.

When, in his presidential inauguration address, Trump spoke of American “carnage”, he was echoing Voegelin’s account of decay and disorder. When he talked of “one people, one nation, one heart” he was evoking the kind of order that Voegelin spoke of. Trump and his acolytes see their mission as the need to restore a natural order, under which illegal immigrants and aliens are kept well away and white people can feel at home once more in a society where everyone signs up to Judaeo-Christian beliefs.

Nothing could be further from the ideas of Herbert Marcuse.

Born in 1898 in Berlin, Marcuse became a member of the celebrated Marxist Frankfurt School, which included Theodor Adorno, Max Horkheimer and, tangentially, Walter Benjamin. Marcuse emigrated to the United States in 1933 as Hitler came to power. By 1940, he had become a US citizen and, while Voegelin was starting work at Louisiana State, Marcuse was working as a researcher for the Office of Strategic Services, the precursor of the CIA. He continued working for the government after the war and resumed his academic career only in 1952. His best-known book, One-Dimensional Man, was published in 1964.

One of Marcuse’s big ideas was the “Great Refusal”: progress had to start with refusing to accept an unacceptable reality. One should say “no” to a world of alienating work, dominated by corporations and impersonal systems, which allow little room for people to explore their deeper sense of humanity. Marcuse saw the student and anti-war protests of the 1960s and 1970s, which adopted him as their intellectual mentor, as evidence that the Great Refusal was gaining momentum.

Trump has given the Great Refusal new life. The documentary film-maker Michael Moore has called for cities to become “regions of resistance” by offering sanctuary to immigrants threatened with deportation. Angela Davis, the once-jailed Black Panther revolutionary who was close to Marcuse, told the Women’s March in Washington that people had to be ready for “1,459 days of resistance: resistance on the ground, resistance on the job, resistance in our art and in our music”. In a lecture at the Free University of West Berlin published in 1970, Marcuse said demonstrations and protests were an essential first step towards a “liberation of consciousness” from the capitalist machine:

“The whole person must demonstrate his participation and his will to live . . . in a pacified, human world . . . it is . . . harmful . . . to preach defeatism and quietism, which can only play into the hands of those who run the system . . . We must resist if we still want to live as human beings, to work and be happy.”

The Great Refusal was a capacious idea capable of embracing anyone who wanted to say, “No, enough!” It could embrace trade unions and workers, African Americans and feminists, students and national liberation movements, those who were on the margins of society and those professionals – technicians, scientists, artists, intellectuals – who worked at its centres of power and who chose to refuse as an act of conscience.

As a new generation prepares to embark on a period of resistance, what lessons should they learn from the wave of protest that Marcuse once helped to inspire?

Protest is a way to bear witness, to make voices heard and to make it possible for people to bond. Yet the fire of protest can easily die out as the Occupy movement did, even if its embers are still glowing. The carnival-type atmosphere can be uplifting but fleeting. Creating common programmes to be taken forward by organisations demands hard work. The Arab spring showed how quickly a popular revolution can turn sour when a movement is not ready to take power.

Since the protests that Marcuse was involved in, no comparable movement of the left in the United States has mobilised such a broad support base. Instead, that period of resistance was followed, at the end of the 1970s, by a shift to the right in the US and the UK. It was reactionaries, not revolutionaries, who set off forward to the past.

Now we seem to be in for an intensifying cycle of conflict between the adherents of Marcuse and Voegelin: between the Marxist revolutionary and the mystic conservative; between resistance and order; between those who want to live among a cosmopolitan, urban multitude and those who want a society of provincial oneness and sameness; those who want change, innovation and creativity and those who crave simplicity, stability and authority.

That much is obvious. Yet what is striking is not how different Marcuse was from Voegelin, but how alike they were. The best way to respond to the rise of Trump might be to blend their ideas rather than set them against one another, to create a new intellectual and political combination. Indeed, they could be seen as different branches of the same intellectual tree.

Voegelin was influenced by the German- Jewish philosopher Hans Jonas, who studied with Martin Heidegger in Freiburg in the 1920s. Jonas joined the German Jewish Brigade, which fought against Hitler, before emigrating to the US, where he became a professor at the New School in New York. He was one of the foremost scholars of gnosticism, which became Voegelin’s focus. Towards the end of his life, Jonas took up a chair at the University of Munich named after Voegelin.

Voegelin did not study at Freiburg, but one of his closest friends was the social ­theorist Alfred Schütz, a student of Edmund Husserl’s who applied his phenomenological thinking to the sociology of ­everyday life. Marcuse studied with Husserl and Heidegger at Freiburg, at the same time as Jonas and Hannah Arendt. From that shared intellectual root have emerged some powerful ideas that could unite progressives and conservatives.

Only at moments of profound crisis – of the kind we are living through – do we see just how contingent, vulnerable and fragile our society is. Voegelin warned: “In an hour of crisis, when the order of society flounders and disintegrates, the fundamental problems of political existence in history are more apt to come into view than in periods of comparative stability.”

A crisis should be a time for profound reflection, yet leaders are more likely to resort to “magical operations” to divert people’s attention: moral condemnation, branding enemies as aggressors, threatening war. “The intellectual and moral corruption,” Voegelin wrote, “which expresses itself in the aggregate of such magical operations may pervade society with the weird ghostly atmosphere of a lunatic asylum, as we experience it in Western society.”

Welcome to the Trump White House.

 

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Voegelin is a timely reminder of how unconservative Donald Trump is and of how conservatives should be a vital part of the coalition against him. Conservatism comes in several strains: laissez-faire conservatives such as George Osborne want small government, free trade, low taxes and freedom of choice. Status quo conservatives such as Angela Merkel want stability and continuity, even if that entails sticking with social welfare programmes and liberal democracy. Authoritarian conservatives, however, are prepared to use the big state to engineer change.

One important question for the future is whether the laissez-faire and status quo conservatives will realign around the ascendant authoritarian camp promoted by Trump. Merkel is the world leader of the conservative-inspired opposition to the US president. But his most profound critic is Pope Francis, who uses language similar to Voegelin’s to condemn the “material and spiritual poverty” of capitalism, and the language of Marcuse to condemn the process of dehumanisation embarked upon by Bannon and Trump.

“As Christians and all people of goodwill, it is for us to live and act at this moment,” the Pope has said. “It is a grave responsib­ility, since certain present realities, unless ­effectively dealt with, are capable of ­setting off a process of dehumanisation which would then be hard to reverse.”

The challenge for progressives is to reframe resistance in terms that can appeal to conservatives: to use conservative ideas of character and spirituality for progressive ends. We will spend a great deal more time trying to conserve things. The swarm of legal challenges against Trump will hold him to the principles of the US constitution and the rule of law. Many of the young people attracted to Bernie Sanders and the Occupy movement yearned for the restoration of the American dream.

Building bridges with the conservative opposition is not merely a tactical manoeuvre to widen support. It has deeper roots in shared doubts about modernity which go back to Freiburg and the man both Marcuse and Jonas renounced in 1964 for supporting the Nazis: Martin Heidegger.

For Heidegger, modernity was a restless, disruptive force that displaced people from jobs, communities and old ways of life, and so left them searching for a sense of home, a place to come back to, where they could be at one with the world. Technology played a central role in this, Heidegger argued, providing not just tools for us to use, but an entire framework for our lives.

Marcuse, writing four decades before ­Facebook and Google, warned that we needed to resist a life in which we freely comply with our own subjugation by technical, bureaucratic systems that control our every thought and act; which make life rich but empty, busy but dead, and turn people into adjuncts of vast systems. We should “resist playing a game that was always rigged against true freedom”, he urged, using language that has been adopted by Trump.

Writing not far from what was to become Silicon Valley, Marcuse pointed to a much larger possibility: the technological bounty of capitalism could, in principle, free us from necessity and meet all human needs, but “. . . only if the vast capabilities of science and technology, of the scientific and artistic imagination, direct the construction of a sensuous environment; only if the world of work loses its alienating features and becomes a world of human relationships; only if productivity becomes creativity are the roots of domination dried up in individuals”.

Writing in the 1960s, when full employment was the norm and advanced society was enjoying a sense of plenty, Marcuse foreshadowed the debates we are having now about what it will mean to be human in an age of machines capable of rapid learning. Mark Zuckerberg’s argument in his recently published manifesto that Facebook creates an infrastructure for a co-operative and creative global civil society is a response to concerns that Marcuse raised.

 

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Just as Marcuse saw that capitalism was a union of contradictions – freedom created on the basis of exploitation, wealth generated by poverty – Voegelin thought modern society was self-defeating: it declined as it advanced. Giving everyone wages to buy stuff from the shops was not progress, he said, but a soulless distortion of the good life, an invitation to spiritual devastation. The gnosticism that Voegelin so hated, the effort to design a perfect society, was also the source of the technological and rational bureaucracy that Marcuse blamed for creating a one-dimensional society. Voegelin would have regarded the apostles of Silicon Valley as arch-gnostics, creating a rational order to the world with the insights gleaned from Big Data and artificial intelligence.

Marcuse and Voegelin point us in the same direction for a way forward. People need to be able to find a sense of meaning and purpose in their lives. Both would have seen Trump’s ascendancy as a symptom of a deeper failure in modern society, one that we feel inside ourselves. The problem for many of us is not that we do not have enough money, but that we do not have enough meaning.

For Voegelin, living well involves “opening our souls” to something higher than buy and sell, work and shop, calculate and trade, margins and profits. Once we detach ourselves from these temporary, Earthly measures of success, we might learn to accept that life is a mysterious, bubbling stream upon which we cannot impose a direction.

A true sense of order, Voegelin argues, comes from living with an open soul and a full spirit, not being part of a machine manufacturing false promises. If we cannot manage to create order from within, by returning to the life guided by the soul, we will find order imposed, more brutally, from without. Marcuse, likewise, thought that turning the Great Refusal into a creative movement required an inner renewal, a “liberation of consciousness” through aesthetics, art, fantasy, imagination and creativity. We can only escape the grip of the one-dimensional society, which reduces life to routines of buying and selling, by recognising that we are multidimensional people, full of potential to grow in different ways. It is not enough merely to resist reality; we have to escape it through leaps of imagination and see the world afresh.

Václav Havel, the leader of the Czech resistance to communist rule, called this “living in truth”. Havel’s most influential essay, “The Power of the Powerless”, written in 1978, is about how to avoid the slow spiritual death that comes from living in an oppressive regime that does not require you to believe in what it does, merely to go along with “living within a lie”.

The greengrocer who is the central figure and motif in Havel’s essay eventually snaps, and stops putting in his shop window an official sign that reads: “Workers of the world, unite!” Havel wrote: “In this revolt the greengrocer steps out of living within the lie. He rejects the ritual and breaks the rules of the game. He discovers once more his suppressed identity and dignity. His revolt is an attempt to live within the truth.”

Human beings by nature long to live in truth, even when put under pressure to live a lie. In language evocative of Voegelin and Marcuse, Havel writes: “In everyone there is some longing for humanity’s rightful dignity, for moral integrity, for free expression of being and a sense of transcendence over the world of existence.”

In communist Czechoslovakia that meant taking a wide and generous view of what counts as resistance as people sought their own ways to “live in truth”. Under President Trump, many Americans are finding they are living within a regime of lies, and they will be drawn back, time and again, to find ways, large and small, personal and political, to live in truth.

Resistance to Trump and Trumpism will succeed only if it mobilises both conservative and progressive forces opposed to authoritarianism, and it needs to stand for a better way to live in truth, with dignity.

Charles Leadbeater is the author of the ALT/Now manifesto, which is available to read at: banffcentre.ca

This article first appeared in the 23 March 2017 issue of the New Statesman, Trump's permanent revolution