“No, it’s good,” I said. “I’m happy. We’re still dating. We’re just not living under the same roof.”
It was good. I was happy. After class, nearly every day, Aaron picked me up in the parking lot behind Hepburn Hall, and I’d climb into his car, the heat roaring, and kiss him. We went on dates. We went to Woody’s and Amigo’s and Fire & Ice. At the little second-run movie theater on Main Street, we saw Rushmore. We saw The Blair Witch Project. We rented movies from the video store and watched them at his place—it was his place now; he paid the rent—and then he drove me back to my dorm. We were proud of ourselves. We had found a way to be together. My hair had grown out to a cute and respectable bob.
One Saturday in March, I answered the phone at the bakery, expecting someone to ask about our hours or to order a cake. I could barely understand the voice on the other end, but eventually I realized it was Aaron. “My dad had a stroke,” he cried.
At home, I found Aaron sitting on the bed, the phone to his ear. When he hung up, he told me what the doctors had said. His father had had a massive stroke. He’d been discovered on his scooter at the Palm Beach Zoo—the zoo!—and rushed to the hospital, where he was now. There wasn’t much they could do but stabilize him.
“This is why I didn’t want to leave,” he said, sobbing. It wasn’t really an accusation, unless it was aimed at himself.
IRONY 2
His father suffered from posttraumatic stress syndrome. He did, after all, get shot into a tree by a landmine when he was not much more than a child. He watched his commanding officer killed in front of him. He killed a man, and his dog.
IRONY 3
Our older son worships his grandfather. He’s obsessed with World War II. His favorite book is Maus. Every time we go to D.C., he asks to visit his grandfather’s grave at Arlington. He will inherit Morris’s Purple Hearts as well as the Nazi armband in our attic, which his grandfather removed from the uniform of the man he killed. When he was in first grade, Nico brought home from school a picture he had drawn of his grandfather at war, swastika armband and all. Luckily, he wasn’t a very good artist then.
GEOGRAPHICAL CURE
How many houses have you and Dad lived in?” Nico asks.
“Together?” I count them up. I run out of fingers. “Eleven. This will be twelve!”
We are moving to a new house. We are tired of living among college kids, the lawn littered with red Solo cups, the electric lines strung with shoes. We chose the Aurora house in haste, fleeing the haunted Etna Road, and we’ve been there for four years. We’ve graduated, done our time. Time to move on—not to flee, but to put down roots. In the summer, we found a half-built house on a couple acres eight miles south, long past where Aurora Street becomes Danby Road. It’s on the farthest edge of the county: the kids can stay at the same school, take the bus. There’s a beautiful view of the mountains, a tiny creek, a strip of trees. The house is all windows and angles and French doors. Aaron and I fell in love with it immediately. “Contemporary as fuck” is how he put it. When we bought it, the only thing inside was a massive salvaged beam from a dairy barn, ancient, sturdy. The old thing in the new house feels like a blessing, like my grandmother’s pearls that I wore at our wedding: something old, something new.
“Why not?” we said, arms around each other’s waists. “Let’s do it.” I loved that about us, that we could make spontaneous decisions together, that we could change our lives if we wanted to.
It will be a couple of years before I’ll hear the phrase, uttered by another codependent at an RCA retreat, “geographical cure.” I won’t need to look it up. I’ll know exactly what it means.
* * *
November in Ithaca is like settling into a long fatal illness. I distract myself from winter, from Aaron’s symptoms, with giddy plans for the new house. I research ceramic tile and wood grains, slate and concrete and quartz. All of the sturdy materials we will build our wolf-proof house with. Nothing will get to us there. Not by the hair on my chinny-chin-chin!
The kids are not excited about the new house. What was wrong with the old one? They don’t care about Caesarstone countertops. They feel comfortable here, in this hundred-year-old house with its vinyl floors and stucco walls.
Every week or so, we drive down the road to check in on the progress. We try to visit when the kids are at school. We have a key, and today the house is empty. There are wood planks on the ceilings now, whitewashed, new. The walls are primed. In the highest windows, trapped flies butt against the glass.
Behind the house, the leaves have fallen off the trees in the woods, and now we can see in plain sight that the rocks leaning against the tree trunks are headstones. We investigate, boots crunching over the leaves. We can barely read the names on the stones, but there are a dozen corpses buried a hundred feet from the house, and they’ve been there for two hundred years. We have bought a cemetery.
We say it at the same time. “No fucking way we’re telling the kids.”
But what is there to do? We go back inside and make love on the stairs of our new house, because there is sawdust on the floor, and a cemetery in our backyard.
* * *
A week later, I wake to a strange sight: daylight. No school today, I remember. It’s a parent-teacher conference day. Aaron isn’t in our bed. He has turned on the air purifier so I can sleep in.
On the dining table downstairs are several versions of the same drawing he draws almost every night, two people bent toward each other, viewed from behind. At age forty-five, deep into illness, he has started drawing. At first, it was cartoons for the kids. Now, twists and turns and faces and figures. Some nights he fills a whole notebook, like he’s making up for lost time.
The kids are awake, and Aaron is singing a song he’s made up for them, called “The Lookaway”:
Have you heard the news about the brand-new dance?
It’s got everyone moving like they peed their pants!
The kids show me the dance, tossing their chins over their shoulders. I laugh hard.
He says, “I have the most useless skills.”
* * *
On another November day, he says, “I want to take a long nap and wake up when all this is over.” He says, “It’s not worth it. I hate to tell you that. But right now I feel like it’s not worth it.”
The kisses, the sex, help. A blow job helps like nothing else. It cools the beast in his belly, in his brain.
“I want to feel something good,” he says.
He says, “This feels good.”
* * *
Spoiler alert.
In season two of Stranger Things, what happens to the boy with the Upside Down inside him is they have to burn it out of him.
He lies in the bed in the woods, writhing in pain, the thing choking him from within. The black vines crawl up his throat. He takes his mother by the throat.
I would do it. I would strap him to the bed, blast all the heaters, and press the hot poker to his belly.
* * *
In a note on my phone, Nico has composed a Christmas list while following me around Target. He has developed a code. The items with a crown emoji next to them are the ones he really wants. Most of the items are video games and most of them are marked with one crown. Then, at the bottom:
A cure for dad
Next to this item he has tapped out 107 crowns.
“Mom?” he asks in the car on the way home. “Are there doctors who are trying to find a cure for what Dad has?”
I think about it. “Not exactly. We don’t know exactly what’s wrong with Dad. We’re kind of trying to find a cure ourselves.”
It sounds outlandish when I say it, like I’m Jane Goodall or Erin Brockovich. Why do I think I can find a cure that dozens of doctors can’t? And why is a cure what I’m looking for?
Back home, Nico helps me carry in the shopping bags. Aaron is moaning faintly on the couch. “You okay, Dad?” Nico asks. He goes to him and strokes his face.
I like to think
he’s imitating me, performing the loving care he has seen me give his father. Maybe he is. Maybe he is just a baby bonobo acting the part of a baby bonobo. What percentage of my own loving care is performance? Nico’s affection is natural, innate.
“I’m okay, buddy,” Aaron says.
* * *
“I want to be sleeping or dead.”
We are at Stu’s. When asked for clarification, he says, “I don’t want to kill myself. I just want to be dead.” I don’t cry at this. It’s not the first time I’ve heard it in this room.
For six years, we’ve sat beside each other on the chocolate suede love seat in the waiting room, but I sit across from him today. This is how the fight starts. Aaron says to me, “You’re such a child.”
We aren’t fighting when Stu goes to fetch us some water. We are fighting when he returns and we fight for perhaps half the session before he puts up a forefinger and says, “My turn?”
The fight is about my being defensive. I am defensive about that. We fight and fight. I defend myself.
And then Aaron says, “You still don’t understand me! You don’t want to understand me!”
This makes me defensive. I say, “Understanding you is my fucking life’s work!”
“Look,” Aaron says. He sits with one elbow over the back of the chair, the other hand gesturing at Stu. He is trying to explain me to our therapist. “I still don’t believe she really believes me.” He is still looking at Stu when he says, “I know my own body, honey.”
We all laugh at the same time.
“You can call me honey if you want,” Stu says.
It’s an inside joke among the three of us, so twice as funny. We like to quote the line from What About Bob, when Bill Murray tells his therapist, “You can call me Boob if you want!”
It helps, or doesn’t help, that Aaron and I are simultaneously reminded of another slip-up of his, earlier in the day, when we were on speaker phone with our builder and Aaron let out a not-subtle fart. We are snickering conspiratorially now and we’ve lost the train of our anger. It’s running around the room like a poodle with its leash trailing.
“That’s how much I care about you,” Aaron tells Stu. “To me, you’re honey.” And we both tell him how, last week when I told Aaron to pick me up a pregnancy test—it was negative, that familiar twin of disappointment and relief—Aaron told me, “If it’s a boy, his middle name will be Stu.”
Stu is touched, but the clock is ticking. He tries to get us back on track.
“You just don’t accept that I’m sick,” Aaron says, looking at me now. “I get one diagnosis, and you can’t accept it. I get another diagnosis, you still don’t accept it. You’re still trying to fix me on your own terms!”
That’s when I stop being defensive and start to cry. “You’re right,” I say. “You’re right, you’re right.”
It’s an unseasonably warm day, fifty degrees and sunny. In Ithaca, any day in November when the sun is out is powerful enough to heal rifts between warring nation-states and spouses.
“Go put your face in the sun for five minutes,” Stu says.
So we stop at the park on the way home and walk along the lake under the willows. He looks for driftwood to draw. I put my hands inside his jacket. It’s like the rush of oxytocin after giving birth, the hormones washing away my body’s memory of pain. Stu’s waiting room is far behind us, and we are only here in the sun, and through my gloves I can feel my husband’s blood beating beneath his ribs.
* * *
In the new house, we will not leave dirty dishes piled in the sink. We will not leave Lego creations on the dining room table. We will not yell at the children to brush their teeth, put on their shoes, stop touching each other, stop saying, “Kiss my ass,” stop saying “Look at my nuts!” In the new house, I will use all five burners of the gas range to make soups with root vegetables, all of the vegetables no one wants from the farm share. We will get a farm share. None of the food in our French-door refrigerator will go bad. The kids will get water for themselves from the dispenser. This will increase my productivity by twenty percent. We will be productive, patient, loving, free. Even our messes will be beautiful—colorful blocks on the shag rug, red wine stains on the concrete counters. We will eat all our meals in the same room. Aaron will not sleep through breakfast. Aaron will not sleep through dinner. I will not whisper-yell, “Don’t wake your father!” We will build plywood furniture from plans we find on YouTube. We will build a new life. We will buy new sheets and rugs and pillows, and none of them will be stained with his blood.
* * *
“Can I tell you something?” Aaron asks me.
I am full of plans for the new house. My mind is on pendant lamps and fiberglass doors, backsplashes and built-ins. But when I show him the catalogs, the Pinterest pins, he shrugs.
“I know it’s crazy,” he says. “But part of me thinks I’ll never live in that house.”
I tell him that breaks my heart. I tell him I have no idea what that means.
Actually, I have two ideas. He believes I will leave him, or he believes he will be dead.
* * *
The first weekend of December, Aaron drops me off at the local arts colony so I can write for a few days. I pack two reusable grocery bags of books. If I get stuck writing, I can read. Yiyun Li’s Dear Friend, from My Life I Write to You in Your Life. Ron Powers’s No One Cares About Crazy People. Leslie Jamison’s The Empathy Exams. I unpack my books, my index cards, my ear plugs, my soymilk. Settling in is the hard part. One half of my brain is trying to focus on my desk. The other half is thinking about my boys—whether Aaron will feel well enough to take them out of the house, whether he’ll feed them noodles for breakfast.
I still haven’t gotten past “The Devil’s Bait” in Jamison’s book. My brain is stuck on it. But I slide out the book and open it up. It feels like touching an old bruise to find the line I read in that coffee shop in Vermont:
This isn’t an essay about whether Morgellons disease is real. That’s probably obvious by now.
The shame of believing, the shame of being fooled.
I close the book. It’s been five years since I researched Morgellons disease with any seriousness, but I find myself typing the words into the search bar. Am I trying to recover evidence, looking for clues to some forgotten crime? To find a definition that will confirm Jamison’s claim? Or that will refute it? There are the familiar photos, the CDC report, the link to Jamison’s essay, published in Harper’s and illustrated with a black-and-white hellscape: a skeletal figure, more insect than man, with fingers distorted into rakes. What I don’t expect to find is a new scientific paper, published in 2016. “Morgellons disease: A filamentous borrelial dermatitis.” Authors: Marianne J Middelveen and Raphael B Stricker. I read the first line of the abstract:
Morgellons disease (MD) is a dermopathy characterized by multicolored filaments that lie under, are embedded in, or project from skin. Although MD was initially considered to be a delusional disorder, recent studies have demonstrated that the dermopathy is associated with tickborne infection, that the filaments are composed of keratin and collagen, and that they result from proliferation of keratinocytes and fibroblasts in epithelial tissue.
I’m sitting on the carpet, cross-legged in front of the coffee table. I increase the size of the font, blow it up. I read the words again. Then I scroll on, past a photo of a hand that could be Aaron’s.
The distinguishing feature of MD is the appearance of skin lesions with filaments that lie under, are embedded in, or project from skin (Figures 1 and 2). Filaments can be white, black, or brightly colored. Furthermore, MD patients exhibit a variety of manifestations that resemble symptoms of Lyme disease (LD), such as fatigue, joint pain, and neuropathy. A study found that 98% of MD subjects had positive LD serology and/or a tickborne disease diagnosis.
I sit up, kneel in front of the screen, stare into it like a face. The part of my brain that is persuaded by scientific language is lighting up with hope:
dermopathy, neuropathy, serology.
Here I fall deep, deep down the rabbit hole.
I open links, chase leads, research publications, Google scientists, define terms. Bovine digital dermatitis, Borrelia burgdorferi, histopathology, microspectrophotometry. I know there are standards for publishing scientific articles, but I don’t really know what they are. “It has to be peer-reviewed!” I tell my students. There are more new studies, more new papers. They seem to be peer-reviewed? All of them are published on Dove Press. What is Dove Press? “Open access to scientific and medical research.” Open access is good, right?
Except you have to pay to have your papers published there. Except Dove Press was kicked out of the Open Access Scholarly Publishers Foundation for “lax standards for accepting manuscripts.”
The author consistent across the articles is Marianne Middelveen. A veterinary microbiologist.
Who is on the board of the Charles E. Holman Morgellons Disease Foundation.
I scroll to the bottom of the first article.
Funding for open access publication was provided by the Charles E. Holman Morgellons Disease Foundation, Austin, TX, USA.
God, what a dummy.
I have been reading at an arm’s length, but still, I feel that I’ve fallen from a great height, splayed hideously on the carpet. My jaw is tense. I close the computer.
* * *
Phone reception is weak at the colony, so the next day I have to step out onto the balcony in my scarf and jacket and socks to hear Aaron’s voice on the other end of the line. He has taken the kids out for breakfast and they’ve watched Robin Hood: Men in Tights and now he is calling from the school playground, where he is tossing a Frisbee around with them.
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