How I Became Extremely Open-Minded

How I Became Extremely Open-Minded 1

When you have a chronic illness and struggle to get better, you try to maintain a certain equilibrium by distinguishing yourself from all those other sick people, the ones who are trying truly crazy things while you are proceeding sensibly and moderately along the path to health.

During my own multiyear struggle to get better from Lyme disease, I spent a lot of time reassuring myself this way, only to have my resolve crumble in the face of continued sickness, mounting desperation. I’m bad but not that bad, I would think when people told me about taking months of IV antibiotics — until I took IV antibiotics myself.

I’m bad but not that bad, I would think while walking through a photograph exhibit on chronic Lyme in the local library, with its pictures of hollow-eyed sufferers with platoons of pill bottles, dozens lined up in rows — until I found myself with drawers full of enough pill bottles to put those medicine cabinets to shame.

I’m bad but not that bad, I would think while I sat in a waiting room reading about some exotic treatment — until I found myself going in for exactly that treatment myself.

These exotic treatments, from acupuncture to IV vitamin C to magnet therapy and more, weren’t the core of what helped me eventually gain ground and improve — strong and various doses of antibiotics played the central role. But they were the most educational part of my slow, still-continuing recovery, in the sense of what they revealed about the complexity and strangeness of the world.

The strangest of them all was the Rife machine.

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The name comes from Royal Raymond Rife, an American inventor who achieved brief renown in the 1930s for claiming to have discovered a “mortal oscillatory rate” for various pathogens, a frequency at which they would vibrate and then shatter, somewhat like a wineglass exposed to the pitch of a skillful opera singer. This discovery was, alas, suppressed by powerful medical interests — or so Rife’s admirers claimed, after his death in obscurity in 1971.

His work was taken up thereafter by entrepreneurs of the medical fringe, who sold frequency-generating machines that promised to rid the body of all kinds of pathogens, often peddling them in multilevel marketing schemes, with sketchy endorsements from dubious research institutes. The caliber of person drawn to this work can perhaps be inferred from the case of a saleswoman named Kimberly Bailey, a California woman whose career as a Rife machine entrepreneur was cut short when she was convicted of plotting the kidnapping and murder of her business partner and lover at the hands of hit men in Tijuana.

When I read up on Rife machines online, these were the stories I immediately encountered — the purest quackery, unfiltered snake oil. But thousands of Lyme sufferers swore by the machines. A sympathetic 2013 portrait of chronic Lyme patients in The New Yorker began with one such case, Kaleigh Ahern, a Saratoga Springs, N.Y., teenager who spent more than eight months on antibiotics after a tick bite led to chronic illness, with crippling headaches, burning muscles and insomnia. Seeing little improvement on the drugs, she switched to a regimen of dietary changes and treatments with a Rife machine — which allowed her to recover sufficiently to graduate from college and go into medical work herself.

This was the kind of testimony that finally persuaded me to try the machine myself. So did the fact that I had been sick for almost two years at this point, and your risk-reward calculus changes radically when it seems like you could be sick forever.

It is difficult to convey just how weird it was when the thing actually arrived — not just the boxy console itself, which looked like it belonged in an ’80s sci-fi movie, but the accompanying instruction booklet, whose preamble informed me that “as an American national, you have the legal right to medically treat yourself by common law according to Amendment IX of the U.S. Constitution.” After that came a lot of advice on the different kinds of frequencies generated by the machine and how to hook up the metal hand cylinders — which, when dampened and gripped, were supposed to transmit the frequencies from the machine into my flesh.

Then came the frequency list: First 873 preprogrammed “channels,” usually linked to a specific ailment, from acidosis to zygomycosis, and then a longer list, which went beyond the frequencies supposedly discovered by Rife and his followers to include 50 years’ worth of purported revelations by ordinary sick people using the machines.

It felt like something out of a paranoid fiction, a slice of invented Americana by way of Paul Auster or Thomas Pynchon. Was it all a hoax, generated by charlatans sitting down with a list of medical conditions and a random number generator? Or did all the complex frequency combinations represent the fruits of a multigenerational labor, some kind of secret investigation conducted by the sick and suffering over years and decades?

There were two channels listed for Lyme disease, each one containing dozens of frequencies. I set the machine up inside the drop-leaf desk in our back bedroom, my office, the most private space that I could find. I dampened the terry cloth and gripped the cylinders, like a robot recharging his batteries or a video game player with a control in either hand. Then I punched in the first channel and hit start.

Naturally, it worked.

What does “worked” mean, you may reasonably ask? Just this: By this point in my treatment, there was a familiar feeling whenever I was symptomatic and took a strong dose of antibiotics — a temporary flare of pain and discomfort, a desire to move or rub the symptomatic areas of my body, a sweating or itching feeling, followed by a wave of exhaustion and then a mild relief. I didn’t get this kind of reaction with every alternative treatment I tried. But with the Rife machine I got it instantly: It was like having a high dose of antibiotics hit the body all at once.

Of course, this was obviously insane, so to the extent that I was able I conducted experiments, trying frequencies for random illnesses to see if they elicited the same effect (they did not), setting up blind experiments where I ran frequencies without knowing if they were for Lyme disease or not (I could always tell).

These experiments were less rigorous than they might have been, because I didn’t involve my long-suffering wife, for whom the arrival of the Rife machine was an unwelcome development, suggesting as it did a touch of mania in her husband. But they were consistent enough that thereafter the machine became part of my treatment process — again, not as a substitute for antibiotics but as a complement, another thing to try when I felt terrible, first helping me take lower doses of the drugs and eventually speeding my slow recovery along.

When I set out to write about the entire chronic-illness experience, I hesitated over whether to tell this kind of story. After all, if you’re trying to convince skeptical readers to take chronic sickness seriously, and to make the case for the medical-outsider view of how to treat Lyme disease, reporting that you’ve been dabbling in pseudoscience and that it works is a good way to confirm every stereotype about chronic ailments and their treatment: It’s psychosomatic … it’s all the power of suggestion … it’s a classic placebo effect … poor Ross, taken in by the quacks … he’ll be ‘doing his own research’ on vaccination next.

But there are two good reasons to share this sort of story. The first is that it’s true, it really happened, and any testimony about what it’s like to fight for your health for years would be dishonest if it left the weird stuff out.

The second is that this kind of experience — not the Rife machine specifically, but the experience of falling through the solid floor of establishment consensus and discovering something bizarre and surprising underneath — is extremely commonplace. And the interaction between the beliefs instilled by these experiences and the skepticism they generate (understandably) from people who haven’t had them, for whom the floor has been solid all their lives, is crucial to understanding cultural polarization in our time.

On both sides of our national divides, insider and outsider, establishment and populist, something in human psychology makes us seek coherence and simplicity in our understanding of the world. So people who have a terrible experience with official consensus, and discover that some weird idea that the establishment derides actually seems to work, tend to embrace a new rule to replace the old one: That official knowledge is always wrong, that outsiders are always more trustworthy than insiders, that if Anthony Fauci or the Food and Drug Administration get some critical things wrong you can’t trust them to get anything right.

This impulse explains why fringe theories tend to cluster together, the world of outsider knowledge creating its own form of consensus and self-reinforcement. But it also explains the groupthink that the establishment often embraces in response, its fear that pure craziness automatically bounds wherever official knowledge fails, and its commitment to its own authority as the only thing standing between society and the abyss.

This is a key dynamic in political as well as biomedical debates. The conspicuous elite failures in the last 20 years have driven many voters to outsider narratives, which blend plausible critiques of the system with outlandish paranoia. But the insiders only see the paranoia, the QAnon shaman and his allies at the gates. So instead of reckoning with their own failures they pull up the epistemic drawbridge and assign fact checkers to patrol the walls. Which in turn confirms the outsiders in their belief that the establishment has essentially blinded itself, and only they have eyes to see.

What we need, I’m convinced, are more people and institutions that sustain a position somewhere in between. We need a worldview that recognizes that our establishment fails in all kinds of ways, that there’s a wider range of experiences than what fits within the current academic-bureaucratic lines … and yet at the same time still accepts the core achievements of modern science, treats populist information sources at least as skeptically as it treats establishment sources and refuses to drink the voter-fraud Kool-Aid that Sidney Powell and the MyPillow guy served to thirsty Trump supporters.

This is the balance that I’ve tried to strike, after my own extreme experiences — to move between the mainstream and the fringe without becoming a captive in either territory. I am more open-minded about the universe than I was seven years ago, and much more skeptical about anything that claims the mantle of consensus. But I am trying not to let that mix of open-mindedness and skepticism decay into a paranoid-outsider form of groupthink. I keep the Rife machine in my attic and I still run it occasionally; I also got vaccinated for Covid without too many qualms.

And when the next disaster or derailment comes along, in my own life or the life of our society, I hope that I will be ready to trust experts as far as it seems wise to trust them — while always being aware that there are more things under heaven than their philosophies encompass, and a lot of strange surprises lurking deep below the not-entirely-solid earth.

This essay is adapted from the forthcoming book “The Deep Places: A Memoir of Illness and Discovery.”

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