The Invisible Kingdom by Meghan O'Rourke

Author:Meghan O'Rourke [O'Rourke, Meghan]
Language: eng
Format: epub
Publisher: Penguin Publishing Group
Published: 2022-03-02T00:00:00+00:00

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One March day I met up with my friend Katie, who had a new baby. She was waiting for me in the coffee shop on a narrow wooden pew, reclaimed from a local church that had been turned into condominiums, as an icy snow stung the ground outside. The baby was sleeping in his stroller beside her, swaddled and peaceful in a way few adults ever seem to be. We sat and talked about her new baby, the novel she was writing, an acquaintance in the midst of a divorce. As customers gathered, the windows steamed up and made the room cozy and warm, the yellow light a cocoon. Her baby woke unexpectedly, and she picked him up and lifted him to her with a smile that pierced me. I wasn’t missing only life’s bacchanalian pleasures—the pleasure of tart raspberries and custard, the self-forgetfulness of a muscle-burning workout, the energetic sense of hurtling out the door, excited about a meeting—but its metaphysical ones. I had no children, and I wanted to be a mother. I once had ambition and yearned to write; now I only wanted the pain and fog to lift. I was, in some profound sense, interrupted and out of time, and it was this—the gray-wool hours through which I moved, the loss of a life as a mother, the loss of meaningful work—that pained me more than anything.

Katie laughed, jerking me out of my thoughts. The baby was smiling and cooing at her, his hair flicked softly up and to the side, his skin untarnished.

I was flooded with a hunger for life that I had not experienced in weeks. I really want to get better, I thought. No, not “better.” I want to have the will to keep living with this illness.

A sense of hope rushed in. I knew then that I needed to learn more about the complex reality of Lyme disease and tackle the near-impossible task of sorting out what was understood and what was not. At the recommendation of a science-writer friend, I finally made an appointment to go to upstate New York to see Richard Horowitz, a Lyme specialist, who is an internist with a focus on the disease.

I did not yet know that simply by exploring whether untreated Lyme disease could be the cause of my illness, I risked being labeled one of the “Lyme loonies”—patients who believed that a long-ago bite from a tick was the cause of their years of suffering. They had been called that in a 2007 email sent by the program officer overseeing Lyme grants at the National Institutes of Health. The now-infamous phrase betrayed just how fiercely contested the disease is—“one of the biggest controversies that medicine has seen,” as John Aucott, a physician and the director of the Johns Hopkins Lyme Disease Research Center, later described it to me. And I was walking right into the middle of it.

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