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This excerpt is adapted with permission from What Doesn’t Kill You: A Life With Chronic Illness - Lessons From a Body in Revolt by Tessa Miller. Published by Henry Holt and Company. Copyright © 2021 by Tessa Delheimer-Miller. All rights reserved.
I was eating dinner with Greg on a humid July night when I felt the first blister. Greg and I hadn’t known each other long and were in the early days of dating. We’d met by chance weeks earlier—just after I’d moved out of a shared apartment with a man I had been engaged to marry.
I tend to touch my face a lot when I speak—a nervous thing—and at some point on this date with Greg, my fingers grazed my left cheek, tracing the bone to where it meets the jaw, just below the ear. I discovered a small, tender bump. It popped when I pressed it, leaving clear fluid on my fingertips. I felt another one just above my right eyebrow. Pop.
The next day, hundreds of the little red blisters speckled my face, shoulder blades, chest, and groin. I snapped pictures of the spots and sent them to Greg and Mom: “Holy shit.”
They itched incessantly, but even worse, every red dot sent a sharp, shooting pain into the muscle and bone beneath it. Each bump felt deeply tethered to the layers of flesh below, like a plant to its roots. This was nerve pain, the emergency room doctor explained, a signature symptom of varicella zoster, the virus that causes chickenpox.
A week earlier, I’d gone to a walk-in clinic for a urinary tract infection I couldn’t kick and a child, 8 or 9 years old, in the waiting room had the rash. I jokingly sent a text to Greg: “There’s a kid here with chickenpox. Knowing my luck, I’ll get it!” Well.
Usually, varicella is spread through close contact (i.e., the blisters themselves), but it can also spread via air—a cough or sneeze from someone who’s infected—or a contaminated surface. It’s easy for people with compromised immune systems to catch, and dangerous. See, healthy immune systems not only try to protect you from getting sick in the first place, they also help fight off bugs when you do catch something. But when your immune system is actively suppressed, like mine, it can’t protect you well from getting sick in the first place. I have Crohn’s, a chronic disease that causes my immune system to attack the digestive system. Crohn’s cannot be cured, but the symptoms—which range from bloody diarrhea to vomiting to intestinal blockages—can be kept at bay with regular infusions of a medicine that helps my immune system not attack my own body. The trouble is that when my immune system is supposed to fight an actual invader, it sputters but doesn’t start. Chickenpox puts even healthy adults at risk for serious complications like pneumonia and meningitis, though for most, it remedies in a week to 10 days.
I fought the goddamn chickenpox for almost three months. (Vaccinate your kids, people.)
The first couple of weeks were miserable. My fever stayed high and I was constantly itchy and sore. The antiviral medication valacyclovir (the same stuff used to treat herpes—chickenpox, shingles, cold sores, and genital herpes are all related) made me queasy. As one patch of spots would crust, a new patch would pop up. Greg changed my cold washcloths and gently dabbed my spots with calamine lotion. He held me up to take sips of Gatorade. He even put the bedsheets in the freezer to help cool me down. I slept day and night, waking only to check my temperature and apply calamine lotion. (I later asked Greg why he took such round-the-clock care of me when we barely knew each other. “Because I loved you,” he said.)
I blamed myself for getting the chickenpox. It all goes back to when I went to youth group at age 13. My mom and dad had recently split up and I was seeking something—stability, probably, and rebellion against my nonreligious, occasionally Buddhist dad. My town was small, white, and conservative, which meant there was a church on every block. I chose the biggest, loudest one: the Baptist church. The Baptists were scriptural literalists who taught me a lot over the following years, such as: salvation is the sole way to heaven, virginity is a girl’s most prized possession, ’N SYNC is the devil’s music, girls should only hug boys sideways so the boys can avoid contact with those wicked breasts, Catholics are probably going to hell and Buddhists are definitely going to hell, gayness can be cured, man is the head of the church and the household, the Bible is the one book anyone needs to read (and really, only men need to read it), we have to pray for George W. Bush, and unborn babies are the Lord’s army and must be protected at all costs. In the church, girls and women were not complex beings. We were virgins or whores; the virgins grew up to be mild-mannered wives and mothers while the whores existed to lead men astray.
I was invested for about two years—long enough to be baptized and go on a mission trip to the Bahamas where my only qualification was being white—before I snapped out of it. This brand of religion was and is toxic, hypocritical, and rooted in white supremacy, sexism, and homophobia. In return for my time with the church, I got a lot of free pizza and a good look at everything I never want to be as a human. But there are two things that have stuck with me from those years: one, an encyclopedia of hymns that pop into my head at completely inappropriate moments, like when my dog finally poops after sniffing 600 spots in 20-degree weather. “Our God is an awe-some God / He reigns from Heaven above / With wisdom, power, and love / Our God is an awesome God!” And, two, this idea that we’re punished for our sins. Though I had long abandoned allegiance to any higher power, I thought the chickenpox might be the universe’s karmic punishment for leaving my fiancé and soon after falling in love with Greg. In a backward way, I was almost glad that with the chickenpox, my “punishment” was visible, a kind of biblical plague of boils. I realize this is an irrational line of thinking, but sometimes brains deal with things in illogical ways.
Reality is less apocalyptic, if also a little harder to accept. I don’t have much control over my body. I went to a walk-in clinic and wound up with chickenpox because I happened to be there at the same time as an unvaccinated kid. Que sera sera.
Around week three with the chickenpox, Greg found a spot on his stomach and another on his face. His mom, when he called her, couldn’t remember if he’d had the rash as a child. And since he was in his 20s by the time the chickenpox vaccine came around, he never got the shot. So, just a few weeks after meeting, we were both down with adult chickenpox. While Greg didn’t get many spots, he was slammed with fever and aches for a week straight. But then, he felt better.
I, meanwhile, had to be hospitalized. Each time I finished a course of antiviral meds, the rash came back in new patches. My immune system wasn’t picking up the slack, so the infectious disease doctor recommended I be hospitalized and put on stronger IV antivirals. I was isolated, of course, and any staff that hadn’t already had chickenpox had to be gloved, masked, and gowned to enter the room. I knew some of the nurses and other staff from my IBD-related stays, and they couldn’t believe my bad luck. “You’re too young to be so sick all the time,” they’d say. Next to my bed was a giant air filter that sucked up the potentially pox-contaminated air and filtered it elsewhere; its loud hum helped me sleep. I spent a week there, eating pudding and watching the Rio Olympics, before the doctor cleared me to continue antiviral pills at home. Still, it took another several weeks of medication and a slow taper before I stopped sprouting new spots.
I have chickenpox scars across my chest and shoulder blades that have faded into white, scattered stars. A deep, perfectly round one on my forehead pisses me off every time I catch it in the mirror because it’s a reminder that my world is smaller than it used to be, and that while I’ve come to terms with my chronic illness, I will always be at risk. But sometimes good things are to be, too: Four months after I found that first pox blister, Greg asked me to marry him with a $200 ring in the parking lot of the Queens Center Mall. From the start, Greg has given me the gift of feeling safe.