I am trying to get Aaron to sleep.
It’s close to midnight on a Sunday, the bedroom dark but for one low lamp, the air purifier purring. He is struggling, crying out, his eyes squeezed shut in pain. I rub his back. I kiss his forehead. “It’s okay,” I whisper. “You’re okay.” Across the bridge of his nose are the freshly flecked scars on his swollen sinuses, like the scratches sleeping babies inflict on themselves with their tiny fingernails. How many nights have I spent rocking babies to sleep, how many hours waiting for the weight of their limbs to fall with the gravity of the dead, then laying them in the crib, sliding my hands out from under their diapered bottoms one knuckle at a time, praying please please please?
But Aaron is not a baby. He is my husband.
Two hours ago, he was in our older son’s room, putting him to bed for the second time. I’d taken the boys to the apple harvest festival—Aaron hadn’t been in shape to go—where they had encountered a clown in the funhouse. Later, the memory of the clown kept Nico awake, and Aaron got him to calm down by telling him about the painting of a clown that had hung in his house growing up, how much it had scared him, and how messed up it was that his parents had refused to take it down. Before long Nico was laughing, and then sleeping, and then the two of us stood as we do most nights in his doorway and said to each other, “What a beautiful boy,” and then stood in Henry’s doorway and said it again.
Now we are in our room. It’s the first night of October in Ithaca, New York. Last week it was in the nineties, and the portable fans are still gathered around the room, blank faced, needy, bearded in dust. It’s a narrow room, once a sleeping porch, still poorly insulated, and any day now we will need to turn on the heat. I’m in my flannel pajamas, wrapped in the bare, slightly sour-smelling duvet, but Aaron is in his underwear, no blanket, no sheet, because even though he’s cold, the contact hurts his skin.
“Did you take your medicine?”
He plunges his hand into the little basket of orange pill bottles arranged on his nightstand. He knows by size and shape which are the right ones. He rattles out two Seroquel, then two Aleve PMs—four years ago, he developed D-grade esophageal ulcers after a steady diet of Ibuprofen—and I help him find the baby-blue pills that have spilled onto the bed. His hands are shaking. He chases them with a swig of Smirnoff Ice. I try not to worry what the sugar will do to his teeth.
Four months ago, he’d been sober for four years. Then he decided that the pain of being inside his own skin was worse than the pain of addiction—and was he really an alcoholic anyway? My sister-in-law was making mojitos that night. She offered Aaron one and he said yes, and we all laughed about her bad influence, the powers of her mixology, but only Aaron and I understood what we were toasting, what we were risking.
“Let’s take off your glasses, honey.” I slide them off his blistered nose and find a place for them beside the bed. There is not a spare inch of space on the nightstand—a tissue box, nasal spray, a drawing pad, three alarm clocks, books upon books, a pencil cup Henry made for him from a frozen orange juice carton in kindergarten last year.
His body is seizing up, each wince piling on the last. “I don’t know what’s happening,” he cries.
I rest my head against his armpit, where I don’t think I’ll hurt him. “Shhhhh.” I don’t know, either. He is having a fit. It is kind of familiar, though I can’t be sure. Is it his skin? Or something deeper? The last two days, his body has issued a red, angry rash, one that evades language as fiercely as it evades diagnosis. (Although what is diagnosis but language?) On his left arm, above the bird tattoo and below the eyeball-sun tattoo, across the tattoo that says ELEANOR, it’s more like a third-degree sunburn. The one on his chest and ribs—a new place, in recent months—might be called a rash. (“Doesn’t it look like a penis and balls?” he asked me earlier today.) The one on his right shin—the one I am very careful not to rub up against in our bed—might best be called a boil. It is faintly blue, the color of the blood inside, though the skin around it is the electric pink of infected skin. Both ankles are slightly swollen. It is bad, though not emergency-room bad. Not even urgent-care bad. At least I don’t think so.
Should I have taken him to urgent care? Despite the old fights about it, our tired cycle of neglect and blame? We wouldn’t need to go to urgent care if you’d called your doctor for a refill! He needed antibiotics three days ago, but he refused them. Tomorrow—Monday—he has promised, he will call his dermatologist for antibiotics, and—while he’s at it!—his psychiatrist, for a refill on the Maxalt. Will she prescribe migraine medicine? It’s related to the mind, right? He will even call his gastroenterologist, he says, for that long-overdue checkup on those ulcers.
I will not call any of these doctors. It was part of our pact four years ago, after I got into Al-Anon, after I learned the word “codependency,” pronounced it like a woman with a new language in her mouth.
Now we have new language, every year a little more. The latest is schizophrenia, at least according to the latest psychiatrist. It’s a diagnosis he’s trying on, a jacket that still needs tailoring. Earlier tonight, from the schizophrenia handbook that hides in the toothpaste drawer, he read me two new words: “executive function.” I tapped the letters into my phone and read him the definition: “a set of mental skills that help you get things done.” Like? “Managing time. Paying attention.” We looked at each other, eyes wide. It has been a half joke among us for years, that Aaron is allergic to finishing things. The dishes. A song. A career. Starting things also! The middle part? He’s good at that.
I think of these words as I’m rubbing his back in our bed. Codependency. Executive function. Does my husband have schizophrenia, and if so, is it a spousal crime to fail to call the doctor on behalf of your executively dysfunctional husband? Is it like expecting your baby to pick up the phone and dial?
He’s on his stomach now. Every few seconds, his legs swing back and then he brings them down hard, one at a time, thumping the mattress.
“You’re kicking the bed again,” I say helpfully.
“Sorry. I know that sucks.” He is almost laughing, as anyone might when their body is out of their control—a shaking hand, a foot asleep. “I can’t help it.”
He has a long, broad surfboard of a back. A beautiful back. When he was a teenager and surfing all day under the Florida sun, his body tanned and lean, you could count—I’ve seen pictures—the marbles of his spine. Now it is the back of a forty-five-year-old man who still lifts weights every day, despite the pain. Fuck it. When I am lying beside him in bed, it is a dune, a whole beach between us. It is the only plane of his body that is not covered in tattoos, or sores.
I watched the tattoo artist put the ELEANOR tattoo on his arm. I was nineteen, half the age I am now. Aaron was twenty-six. In Burlington, Vermont, the city where my parents had fallen in love, I sat in the corner of the tattoo parlor and watched my name appear, letter by capital letter. Eleanor, even though he, like my family, called me Nell. So formal! And crooked, I was sure. Say something, I willed myself. But was it really crooked? Or was it just my angle? And wasn’t it too late anyway?
In our bed, he thrashes. He looks as though he’s being attacked by a hundred invisible needles.
Or is he being attacked by a hundred invisible demons? Are they outside, or inside?
“He’s always had his demons,” his best friend Derek told me on the phone, the night I called him four years ago. I nodded, knowing how much Aaron hated that fucking phrase, like he was an aging rock star on a VH1 documentary.
On the bedside table, my phone pings. I reach to turn off the volume. Beside the phone, splayed facedown and open, is a book. Part of my mind is still in that book. Part of my mind is scanning my phone—who is texting at this hour?
But I don’t pick it up. I put my lips to Aaron’s forehead. It’s clammy, though his cheeks are hot.
Maybe he just has a fever. Maybe he’s shivering. Maybe his body is fighting the infection in his limbs. It is almost poignant to me, the way his systems continue to rally, to fight off their threats, despite all of the ways they are broken.
But the struggling seems deeper. Tonight it is inside. His skin is burning, but he is burning somewhere else, too. He drives his head into the pillow. “Breathe,” I say. “Don’t fight it.” I say this with conviction, though I have no idea if it is the right advice or the exactly wrong advice. It’s the kind of thing the midwives told me when I was giving birth—don’t fight the labor, work with your body, not against it. And in fact my husband reminds me of a laboring woman, the pain that extraterrestrial, the desperation that whole. Any minute now he might expel eight pounds of life force. What would it look like, the foreign matter that is fighting so hard to break through his skin? I think of Gremlins, which we’ve just introduced to our kids. I think of Gizmo, splashed with water, writhing in anguish, and picture Aaron popping three viscous Mogwai out of his back. Pop! Pop! Pop!
What is it with that horror-movie goo? That ectoplasm of Gremlins, Ghostbusters, Alien. Last year, in this bed, we binge-watched the first season of Stranger Things, where that goo is nothing less than a portal to another world, the secretion of some dark birth canal that leads to the Upside Down.
I cried when it was over and I didn’t know why. I wasn’t just scared. I wasn’t just exhilarated. I was devastated. I felt so helpless, so sad.
It was the unkillable-ness of that monster. It would not die. It lurked in the darkness, never showing its face. It went away, and then it came back. And as hard as those kids tried to kill it, with shotguns and bear traps and Christmas lights, it returned to haunt them. And now, just when it seemed to be gone, it bubbled up its black tar from that poor boy’s throat. The monster was inside him now.
Here we are, Aaron and I, in the middle of the night, in our Upside Down. How did we get here? How do we get back?
“It’s bad,” Aaron says, his face in the pillow.
“Breathe,” I say, and I can hear him trying. He is trying.
It’s bad, but not bad-bad. It’s not guzzling-the-Nyquil bad. It’s not fighting-all-night bad, or crying-all-night bad, or hallucinating-bugs bad, or sitting-on-his-hands bad, or beating-himself-up-with-a-baseball-bat bad. It’s not call-our-therapist bad. Another night, when I don’t know better, I might have my phone in my face, rage-researching every symptom. Another night, he might punch himself in the face. Another night, in a cruel and illogical rage, I might smack him in the face. Stop it! Stop doing this to yourself! Wake up! Come back to me! Help!
Not hard enough to hurt him, I think, though I will feel the tarry shame in the morning and apologize. I’m sorry. I’m so sorry.
The worst nights are not the ones where he suffers beside me. The worst nights are the ones where he suffers alone. The worst nights, he sleeps on the couch downstairs, despite my begging. I don’t want to keep you up. I can tell it’s going to be a bad night.
Or: It’s too much. Or: I’m fine. Or: You didn’t sign up for this.
The worst nights, I can hear his soft voice down the stairs. It’s the early hours of the morning and he’s on the phone. For a moment I let myself hope he is talking to a friend. I let myself worry he is talking to a woman. But I know he has called the suicide hotline. A faceless, professional voice on the other end of the phone. And because what I fear more than anything is that my husband will try to kill himself again, and because what I want more than anything is to be the one to save him, it is the worst kind of betrayal. I go back to our room and sleep alone. I toss and turn, desperate and furious and hurt. Short of saving him—I am reasonable enough to know I can’t save him—I want all his pain to myself. Is that too much to ask?
Tonight, though, he is in our bed. Tonight, my touch is gentle. I spoon his beautiful back. “Stop hunching your shoulders,” I say. “Let me get in there.”
He relaxes his shoulders a little. I find the warm crease of his neck. I lay the kisses along his collarbone. His shoulders relax some more. He purrs. His feet thump the bed softly.
His skin: that tender membrane between inside and outside. What nerve endings is my mouth reaching, and what chemical reaction is happening below the surface? How do my kisses slow the beating of his heart, and ease the breath in and out of his lungs, and turn the fretful moan in his chest to the even rasp of sleep?
Maybe it’s the Seroquel. But I like to think it’s love.
I slide my left hand out from beneath him and place it on his back, soft, firm.
Tomorrow morning, I know, we will stand in the kitchen while the Keurig heats up, and he’ll be warm and solid and upright, and we’ll hold each other and we’ll say, “I’m sorry it was a bad night.”
But now, with my left hand on my husband’s back, I reach for my book with my right. His snoring is the loveliest sound on Earth. Peace has been restored. The monster has been banished. The portal, for tonight, has been sealed. And I read by the lamplight, far longer than I should.
SICK HOUSE FAMILY
In Nico’s backpack, in a wrinkled pile of fourth-grade homework—fractions and energy transfer and Susan B. Anthony—I find a worksheet about feelings. When I feel angry, I can take a deep breath. Nico finds this series boring and babyish, and half the blanks are empty, or answered with a sloppy I don’t know. I’m kind of proud of his bullshit detector, though his dad and I tell him, “Sometimes you just have to bullshit.”
But I keep reading.
I feel anxious about _________.
On the line he has written three words: sick house family.
I find him in his bed, reading a comic book. “Nico,” I say, trying to keep my voice open, steady. I show him the paper.
He takes it, balls it up, and throws it under his bed.
* * *
Last year, in kindergarten, with the pencil cup made from the orange juice carton, Henry brought home a drawing of Aaron for Father’s Day. On the other side, a worksheet about his dad.
My dad is a _________. My favorite thing to do with my dad is _________.
His teacher’s handwriting completes the blanks. One line says:
My dad is really good at putting medicine on his boo-boos.
* * *
Henry asks me in the car, “Were Dad’s boo-boos there when I didn’t exist?”
I tell him yes, he was in my tummy when Dad got sick.
The summer of 2011. I was seven months pregnant and on tour for my first novel, leaving Ithaca for a week, then coming home for the weekend, then going out on the road again. Aaron was home taking care of Nico, and our dog and cats. He texted me pictures of our son asleep in our bed in his Batman pajamas.
Maybe it was the stress of solo parenting a three-year-old. Maybe it was the lack of sleep. One night on the phone, he said, “I have this weird rash.” He texted me a picture: little red bumps on his back and the back of his arms, around his elbows. “Weird,” I said. “Go get it checked out.” We both expected it to go away. But he didn’t go to the doctor for another few weeks, until I was home for good, and by that time the rash had spread into painful, dime-sized lesions that wouldn’t heal.
When Henry was born a month later, it had been diagnosed as a staph infection. We had to get special permission for Aaron to be in the delivery room. The lesions spotted his torso, his legs, his concave temples. He was fatigued and he was in pain. He’d dropped from 163 pounds to 138. In the pictures of him holding our newborn, he is frightfully skinny. For most of my labor, Aaron slept in a chair while I rocked back and forth with contractions in the shower, he in his private pain, I in mine.
Aaron’s skin didn’t heal. It wasn’t a staph infection, his GP said. But he wasn’t sure what it was.
The first dermatologist, the head of dermatology at the state university hospital, said, “Prurigo nodularis!” with such conviction that later Aaron said he looked like he expected a high five. He took a biopsy that turned up nothing. He gave him some steroid creams that didn’t help.
The second dermatologist said, “You say it flares up with stress? Maybe you should look into that.” And stood to leave.
The third dermatologist took another biopsy and confirmed it. Prurigo nodularis. It means, basically, “itchy nodules.”
I’m not sure what those doctors saw under the microscope. Prurigo nodularis isn’t a bacteria or a virus or a parasite. It’s the body’s response to scratching, to self-excoriation.
“But he doesn’t scratch them,” I told the fourth dermatologist, who wasn’t a dermatologist but a physician’s assistant, but looked like he could play a dermatologist on a soap opera. “They just erupt that way. Spontaneously.”
“I understand. A lot of people scratch them in their sleep.”
“But his skin doesn’t itch. It hurts.”
“Well,” he said, not unkindly, “you have to understand. Ninety percent of patients with this disease deny itching and scratching.”
Copyright © 2021 by Eleanor Ann Henderson