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In 2014, a strand of RNA called an enterovirus invaded my meninges, the lining that covers my brain and spinal cord. As the virus used the machinery of my cells to make more of itself, those new viral particles invaded further cells. I soon became extremely sick. The symptoms of viral meningitis can vary, but they often include stiff neck, fever, nausea, and an unshakable belief that viruses are not merely unalive.
Also, there is the headache.
Virginia Woolf wrote in “On Being Ill” that it is “strange indeed that illness has not taken its place with love, battle, and jealousy among the prime themes of literature. Novels, one would have thought, would have been devoted to influenza; epic poems to typhoid; odes to pneumonia, lyrics to toothache. But no.” She goes on to note, “Among the drawbacks of illness as matter for literature there is the poverty of the language. English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache.”
Woolf had migraines, so she knew this poverty of language firsthand, but anyone who has ever been in pain knows how alone it can make you feel—partly because you’re the only one in your pain, and partly because it is so infuriatingly and terrifyingly inexpressible. As Elaine Scarry argues in her book The Body in Pain, physical pain doesn’t just evade language. It destroys language. When we are really hurting, after all, we can’t speak. We can only moan and cry.
“Whatever pain achieves,” Scarry writes, “it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language.” I can tell you that having meningitis involves headaches, but that does little to communicate the consciousness-crushing omnipresence of that headache. All I can say is that when I had viral meningitis, I had a headache that made it impossible to have anything else. My head didn’t hurt so much as my self had been rendered inert by the pain in my head.
But I think it is impossible to communicate the nature and severity of such pain. As Scarry puts it, “To have great pain is to have certainty. To hear that another person has pain is to have doubt.” Hearing about pain that we do not feel takes us to the limits of empathy, the place where it all breaks down. I can only know my pain, and you can only know yours. We’ve tried all sorts of ways to get around this axiom of consciousness. We ask patients to rate their pain on a scale of one to ten, or we tell them to point at the face that looks most like their pain. We ask them if the pain is sharp or dull, burning or stabbing—but all of these are metaphors, not the thing itself. We turn to feeble similes, and say that the pain is like a jackhammer at the base of the skull, or like a hot needle through the eye. We can talk and talk and talk about what the pain is like, but we can never manage to convey what it is.
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Unlike meningitis caused by bacteria, viral meningitis is rarely fatal and usually resolves on its own within seven to ten days. This sounds like a reasonable period of time to be sick, until you’re actually inside of it. Sick days do not pass like well ones do, like water through cupped hands. Sick days last. When I had the headache, I felt certain I would have it forever. The pain of each moment was terrible, but what made me despair was the knowledge that in the next moment, and the next, the pain would still be there. The pain is so entire that you begin to believe it will never end, that it cannot possibly end. Psychologists call this “catastrophizing,” but that term fails to acknowledge that pain is a catastrophe. The catastrophe, really.
For many people, including me, the initial period of viral meningitis is followed by several months of occasional headaches, which arrive like the aftershocks of an earthquake. Over a year or so, my headaches grew more infrequent, and by now they’ve almost entirely subsided. I can hardly even remember what the headaches felt like. I remember that they were terrible, that they circumscribed my life, but I cannot return to my pain in any visceral or experiential way. Even though I myself had the pain, I can’t fully empathize with the me who had it, because now I am a different me, with different pangs and discomforts. I am grateful that my head doesn’t hurt, but not in the way I would have been grateful if, in the midst of the pain, it had suddenly disappeared. Maybe we forget so that we can go on.
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I became sick with meningitis just after returning to Indianapolis from a trip where I visited both Ethiopia and Orlando, Florida. My neurologist told me I probably caught the virus in Orlando, because, and I’m quoting him here, “You know, Florida.”
I spent a week in the hospital, although they couldn’t do much other than keep me hydrated and treat my pain. I slept a lot. When I was awake, I was in pain. And I mean in pain. Inside of it.
Of course, aside from the fact that it doesn’t usually kill you, there is nothing to recommend about viral meningitis. As Susan Sontag wrote, “Nothing is more punitive than to give a disease a meaning.” The virus that spread through my spinal fluid had no meaning; it did not replicate to teach me a lesson, and any insights I gleaned from the unsharable pain could’ve been learned less painfully elsewhere. Meningitis, like the virus that caused it, wasn’t a metaphor or a narrative device. It was just a disease.
But we are hardwired to look for patterns, to make constellations from the stars. There must be some logic to the narrative, some reason for the misery. When I was sick, people would say to me, “At least you’re getting a break from all that work,” as if I wanted a break from my work. Or they’d say, “At least you’ll make a full recovery,” as if now was not the only moment that the pain allowed me to live inside. I know they were trying to tell me （and themselves） a tightly plotted and thematically consistent story, but there’s little comfort to be found in such stories when you know damn well they aren’t true.
When we tell those stories to people in chronic pain, or those living with incurable illness, we often end up minimizing their experience. We end up expressing our doubt in the face of their certainty, which only compounds the extent to which pain separates the person experiencing it from the wider social order. The challenge and responsibility of personhood, it seems to me, is to recognize personhood in others—to listen to others’ pain and take it seriously, even when you yourself cannot feel it. That capacity for listening, I think, really does separate human life from the quasi-life of an enterovirus.
I give viral meningitis one star.
PLAGUE
THE OTHER DAY, in the midst of a global disease pandemic, I called my pharmacy to refill my Mirtazapine prescription. Mirtazapine is a tetracyclic antidepressant medication that is also used to treat obsessive-compulsive disorder. In my case, it is lifesaving. So anyway, I called my pharmacy only to learn the pharmacy had closed.
I then called a different pharmacy, and a very sympathetic woman answered. When I explained the situation, she told me everything would be fine, but they did need to call my doctor’s office before refilling the prescription. She asked when I needed the medication, and I answered, “I guess in a perfect world, I’d pick it up this afternoon.”
There was a pause on the other end of the line. At last, stifling a laugh, the woman said, “Well, hon, this ain’t a perfect world.” She then put me on hold while talking to the pharmacist, except she didn’t actually put me on hold. She just put the phone down. And I heard her say to her colleague, “He said—get this—he said in a perfect world he’d pick it up today.”