On a sunny spring morning in 2006, while my husband, Mike, was showering, I secretly sprinkled his bath towel with holy water I had gotten from a friend who had used holy water from the same source on her husband. Her husband went on to survive his cancer, so I happily accepted the plastic container filled with water from a sacred site in Europe. It couldn’t hurt, right? Watching Mike dry himself off, I tapped into my childhood Catholicism and faith in a benevolent God as I pictured the magic water covering him with a protective layer. I never told Mike I did this. And I still feel guilty that I did. Neither of us went to church; we were agnostics. He would have been very annoyed. He didn’t believe in magic.
But we were six months into multiple brain surgeries and complications stemming from what was described to us as a benign tumor that had nonetheless taken over his midbrain. Thanks to hours on the internet, I had tried to Nancy Drew my way to the cause of his tumor, which devolved into my dabbling in conspiracy theories, and now I was out of options.
That was the last morning Mike would ever shower in our home. It was the last time he would see our 1-year-old boy wake up in his crib. When Mike received his craniopharyngioma diagnosis in October 2005, he was given a 95 percent survival rate at five years out, but he was dead nine months later. He spent many of those months hospitalized, undergoing radiation therapy, blind, with no short-term memory and unable to care for himself, enduring over a dozen brain surgeries and other procedures.
I watched the disappearance of light from his eyes as this once brilliantly funny man looked up at me from his hospital bed each morning, kind but emotionally flat, unsure if I was arriving for the first time that day or if I was just returning from the bathroom. I have a picture in a small album that shows Mike in the hospital holding our son, looking down at him quizzically but unaffected, as though the baby were a strange rock or a loaf of bread.
The doctors surely tired of my asking, “When will he be back to normal?” and “When will this be over?” There is nothing quite like feeling you have no agency to affect your circumstances. Up until then, my efficacy had always paid off. I got all A’s, was editor of my public high school newspaper and landed a free ride to an Ivy League school for my Ph.D. Lots of agency.
But I could not outorganize, outresearch, outcharm or outwork a tumor. So I turned to magic. It wasn’t just the holy water. I started keeping a little heart-shaped healing stone in my pocket for luck and brought him fresh berries from home each day. I read about the anti-inflammatory properties of berries online, so I fed them to Mike and pictured the berries shrinking the golf-ball-size tumor in the middle of his head. I started praying again for the first time since middle school. You find yourself bargaining in those moments. “I’ll never ask for anything again if you just get Mike better.” Well, he didn’t. So I guess I can keep asking God for things.
At some point, all of us will experience the maddening disconnect between our human desire to make things normal again and the dissatisfying limitations of the human body and of science and medicine. Not because science and medicine are wrong but because science and medicine are not magic.
Looking to magic and intuition for agency in a moment when science and medicine are frustrating is normal and human. But I worry that these normal human impulses are being exploited by powerful people who would rather a desperate wife carry a heart-shaped rock in her pocket than allow the government to support the very research that could actually treat or cure brain tumors like Mike’s.
Robert F. Kennedy Jr. and the Make America Healthy Again movement encourage us to lean into personal intuition and common-sense solutions over scientific evidence, to embrace the spirit of American individualism (your health is up to you!) over institution-based approaches. (The fact that such wishful thinking can also invite charlatanism of the “Apple Cider Vinegar” variety is another, separate problem.) There’s an appeal to individualized, intuitive approaches to health. Carrying that little rock, feeding Mike berries and even saying prayers made me feel better. They didn’t help him, but they helped me. They made me feel I was taking action. But they weren’t actions that were going to cure him. And they weren’t going to help uncover the origins of his tumor or why it grew so fast.
It’s science and research that do that — slowly, over many years. Not fast enough to save Mike, but that’s why he was eager to be part of a scientific study, to help people in the future. His giant tumor became a part of the research on craniopharyngioma treatment that was conducted by his neurosurgeons at Thomas Jefferson University Hospital. The university received about $72 million from the National Institutes of Health last year. Now this administration is trying to cut thousands of similar grants.
I see what MAHA is offering. It’s not really about making America healthy. It’s about giving people the illusion of agency in a complicated and scary world.
In between the organic berries and getting duped into a holy water bath, Mike was receiving cutting-edge science-based medical care — radiation therapy and noninvasive surgical techniques that had been developed and perfected, thanks in part to N.I.H. funding to university hospitals. The Trump administration has proposed cutting the N.I.H.’s budget by 40 percent.
One of those surgeries finally ruptured the fluid-filled cyst, relieving the pressure in Mike’s brain and bringing him back to us almost entirely — vision, memory, humor, emotions — for 24 hours. “You poor thing,” he said, stroking my cheek, “You must have been so worried.” He ate a Pat’s cheesesteak and left voice mail messages for those friends who couldn’t get to the hospital. It was a damn miracle. But of course, there are no miracles, and the postsurgical swelling triggered a sympathetic storm and multisystem organ failure. He went into a coma and died 10 days later. But Mike didn’t die because of medical malpractice. He didn’t die from surgery or science. He died from a rare, aggressive brain tumor. Because, despite the miracles of modern medicine and advances in science, the human body remains a mystery.
Because science is not magic. But magic isn’t magic, either.
Dannagal G. Young is a professor of communication and political science at the University of Delaware and a director of its Center for Political Communication. She is the author, most recently, of “Wrong: How Media, Politics, and Identity Drive our Appetite for Misinformation.”
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