We talked about my two sons. Her two sons. My work, her work. It turned out she actually was a minister. She had been a social worker for years. Then she’d gone back to school. She had just been assigned to a Methodist church.
What we didn’t talk about: my husband, her husband. I knew she had one. They weren’t technically married; they’d both been married twice before. But we didn’t talk about them. Irrelevant! It was just the two of us, drinking coffee, being women, being mothers, taking care. Whenever I’d open my mouth and start talking about Aaron—or worse yet, when I would begin to answer the question How are you? with Aaron—she would gently course-correct me. Once she complained about another Al-Anon-er who talked incessantly about her qualifier. She’s missing the point! Kate said. Oh. Got it. I would not miss that point!
So I didn’t talk about Aaron. I talked about missing my mom. I talked about teaching and writing. I talked about trying to keep my kids happy and safe.
They were, I thought, happy and safe. They had mostly been protected from Aaron’s hurricane. We didn’t lie about it. We just gently reshaped the truth. When he was in the psych ward, he’d been “in the hospital.” True. He was “sick.” Also true. When he was going to rehab, he was going to “a meeting,” or to “class.” True and true. Was this how it started? Was this what my parents had done, when they kept their marriage problems a secret? Would my kids be in their thirties before they learned that their father struggled with mental illness? With addiction? That their parents were in therapy?
But they were still so little! Nico had just turned five. Henry was almost two. They loved their dad unconditionally. They didn’t have the language for understanding what he was going through. Henry was just babbling out little clutches of words. I had weaned him that spring, but he still walked around in his footed pajamas with my bra in his hand like a blankie, muttering “Milk, milk, milk.” Meanwhile Nico had taken to coming down the stairs in the morning with five T-shirts on.
Kate laughed. Pick your battles, she told me. Except she didn’t give me advice. In Al-Anon, we spoke from our own experience, strength, and hope. “I tried to remember to pick my battles,” she said, remembering her own sons, now grown, one with a baby of his own. “I tried to say yes as much as possible.”
I tried this. I tried to say yes as much as possible. Who cared if Nico walked around with five T-shirts on? He was fine. His father was alive. He was healthy. We were all healthy. I walked around, knocking on all the wood. In the rooms, and in the Wegmans café, I did not talk much about Aaron. This was difficult, and also a relief. It removed Aaron from the center of my story and also gave him the space to struggle on his own.
I saw, from my side of the room, that he was still struggling. I could see how hard he was on himself. From the moment he’d come out of the psych ward, it seemed to me he’d wanted to do recovery perfectly. A meeting every day, push-ups and meditation and wheat-grass smoothies. It wasn’t new to him, after all, recovery—it was just a new word for the straight edge kid’s inexhaustible reserve of reinvention. All or nothing. That was what I would have said about Aaron, if I had been talking about him.
“Sometimes I just had to remember to do the next right thing,” said Kate, sensing, perhaps, all I wasn’t saying. “Whatever was in reach. Sometimes all I could do was read my kids a story.”
That worked. I took it literally. Henry would be crying, or Nico would be whining, or I would be yelling, and I would sit down on the floor where I was standing, reach out my arm until it touched the nearest book, and pull them into my lap. I couldn’t save their dad. At least I thought I wasn’t supposed to. Or I wasn’t supposed to want to. But anyway, Elephant and Piggie? What were those two fellows up to?
We did talk, Aaron and I, at Stu’s. Stu was so pleased with us! Going to AA, to Al-Anon. On his big yellow pad he wrote down all the programs Aaron was going to. CBT. DBT. Aaron had a drug counselor, a therapist, group therapy. Group, it was called, just Group. Stu was proud but he was kind of unsettled, seeing as he’d had no idea Aaron was an alcoholic. He ran a Drug and Alcohol group for men on Wednesday nights! And still, he had not seen it coming. “You and me both!” I said. We laughed. We were in good spirits. He was an alcoholic! An addict. Of course. He’d just needed a program.
Stu was part of our program, too. We saw that now. Why did people only go to marriage counseling when they were in a crisis? When they wanted to know if they should get a divorce? We were rising from the ashes of our crisis, and yet we knew we still needed Stu. I was resolved to be one of the white-haired ladies in Al-Anon in thirty years. It would be a lifelong program. Marriage counseling would be part of the program.
That had been our problem, I saw. We had not had a program.
Now we had a program.
* * *
I’d started to say it, to some of our friends: “Aaron’s in recovery.” He was doing well, on track, on program. I was grateful for this handy phrase, which gave these uncertain months a structure, a story: a road to recovery.
I told my family about rehab, therapy, medication. I told them we were making a fresh start in a new house and attached a picture of it, along with a picture of Nico and Henry smiling in the bath. My brothers and sisters-in-law responded with support and love. My dad wrote back:
Good show, guys.
Looks like a great house.
Where is the smoking porch?
Love, Pops.
Maybe the reason my dad didn’t say much wasn’t because he didn’t understand. Maybe he understood all too well what life looked like after you’d tried to end it. You could take away the alcohol. You still had to be the person you were. Now you just had to deal with it.
* * *
The rooms were in a stately brick building that had once been an orphanage, and then a Church of God, and now it was supported by the community as a recovery center. On the white board in the little lobby was a calendar listing every kind of meeting you could dream of. Recovering Couples Anonymous, RCA, was held on Sunday evenings in the big room downstairs. It was where Aaron attended AA. When we stepped into the room together, it felt like we were crossing a threshold.
When Kate had mentioned the meeting, I didn’t know what to expect. Couples who were in recovery: What did that mean? Did they both have to be addicts? Is that the way it worked for other people: addicts found each other, and then got sober together? Or had they gotten sober before? Had they all met and fallen in love in AA? Was that the fatal, stupid flaw in our marriage: we were mismatched, addict and codependent, forever on opposite sides of the fence?
All of this was in my head as Aaron and I stepped into the room. There was Kate, grinning, waving us over. “Welcome!”
I went over and gave her a hug. I started to introduce her to Aaron, but Aaron was hugging the man sitting beside her. Her partner! He was calling him by the name of his drug counselor, Rich. My sponsor’s partner was Aaron’s drug counselor! We all laughed at this. I shook Rich’s hand. Aaron shook Kate’s. It was like one of her little cosmic stories. It was like a double date. I felt dizzy with belonging. Aaron’s recovery and my recovery slipped beside each other like two canoes. We were all in the rooms now. They had opened up before me, these rooms, invisible to me before but now as big as a secret Wegmans. In fact, I think I recognized some of these people from Wegmans. I looked around. They were welcoming us, shaking hands.
And before long I would see that these couples were, like me and Aaron, mismatched, codependent, unmanageable, two trees tangled around each other from the roots. A lawyer and a chemist, together since high school, on the brink of divorce when they’d started coming to meetings eight years ago. Eight years! An EMT and a kindergarten teacher. A massage therapist and an opera singer. A midwife and a—well, he didn’t work. He was in recovery! In some couples, both were addicts. In some, only one was. Some weren’t married. Some didn’t even live together. Some had been together for decades, some for just months. Some were young, some were old. Most were straight
. Most were white. There was a lesbian couple, two Italian women with a small daughter who sat between them, coloring. How did they get her to sit so very quietly?
“Hi,” one half of the couple would say. “I’m so-and-so, and I’m in recovery with so-and-so.”
And then everyone would greet them as a couple.
They went around the table, introducing themselves, ten couples or so. When it came to our turn, I looked at Aaron. We raised our eyebrows at each other.
“Hi.” I sounded out the words slowly. “I’m Eleanor, and I’m in recovery with Aaron.”
“Hi.” His turn. “I’m Aaron, and I’m in recovery with Eleanor.”
“Hi, Eleanor! Hi, Aaron!”
We traded little smiles. Under the table, I squeezed his knee. He squeezed mine back.
The couple leading the meeting sat at the front of the room, a book open in front of them. Kate handed us a guest copy, and we found the right page. The wife began to read:
Ours is a fellowship of recovering couples. We suffer from many addictions and dysfunctions, and we share our experience, strength, and hope with each other that we may solve our common problems and help other recovering couples restore their relationships. The only requirement for membership is the desire to remain committed to each other and to develop new intimacy.
I was practically shaking with recognition. On the table in front of the couple sat a candle on a hand-carved three-legged stool. The three legs, they read, represented my recovery, my partner’s recovery, and the couple’s recovery. Or commitment, communication, and caring.
Three more C’s! I tried to see it all with some critical distance, these Ithacans with their candles and prayers and alliteration, their ceramic brown mugs of chamomile. I tried to spin it into a joke.
But I suddenly felt dead serious. What was this feeling of icy heat, like Vick’s VapoRub on my chest? Was this what fellowship felt like? Was this faith? Was this my shame, leaving me?
THEORY 3
It’s stress, stupid. The stress caused the rash. The alcohol suppressed the stress.
MADNESS OF TWO
When cancer returns to the body, when the old cancer cells you thought had been killed haven’t been killed, it’s called a recurrence. With autoimmune diseases, when the symptoms come back, it’s called a flare-up, or a flare.
Which is the weird disease your husband had? (Has?) A cancer—a foreign invader? Or is it his own body, turning on itself?
When you think that the weird disease that has almost ruined your husband has been killed, is capable of being killed, has been gone for a year, you imagine yourselves victors. Survivors of a deadly combat. He runs the Ithaca Festival Mile with your six-year-old and he might as well be running a marathon, so healthy and handsome he looks in his black running tank, his toned biceps flashing down Cayuga Street. From the sidelines, you cheer like a soccer mom.
When the disease has been killed not through radiation or chemotherapy but through some murky combination of luck and will and alcohol, you both remain, even in remission, in submission to the fickle beast, lest he wake from his cave. Be nice to your skin. Pet it. Moisturize. Exfoliate. Meditate. Avoid stress. Stay on program. Pray to the beast. You cannot feed the beast alcohol anymore. The alcohol will kill your husband if the pain doesn’t first.
Was it really ever dead, or have the cells just been sleeping? One afternoon in 2014 at the end of that first year of recovery, that long, lovely pink cloud, your husband will have to make a phone call. He has to call a doctor’s office and make an appointment. You go out. He stays home. He finds that he can’t do it. He finds himself locked in the bathroom with his phone in his hand, panicked. He paces. He sweats. When you come home, he emerges from the bathroom, and the sores on his forearms—the ones that had faded to scars the camouflaged color of chewed bubble gum—are on fire. A flare. The blood has bloomed to the surface. He walks out of the bathroom like a zombie, arms floating in front of him, like they belong to someone else. He walks out of the bathroom like Teen Wolf. The transformation is that swift, that complete.
“No,” you say. “No no no no no.”
You had been on guard for the return of the wrong monsters. It was suicide you were worried about, and alcohol. Relapse. Your army was divided, weakened. While you weren’t looking, the other beast has awoken. It’s the beast’s fault, and yet it’s your husband who has called him back.
This is the way you see it, this is where your fear goes. It fights. It blames. How not to blame your husband, when it lives inside him? What’s so hard about making a fucking phone call? And how does it lead to this?
There is nothing to be done. Keep coming back to the rooms. Buy him the apricot exfoliating soap he likes. Cry.
Going back to the rooms is hard when Aaron’s skin is on fire, though. You go to your own room. More and more, he stays home. He has been tiring of the AA meetings, anyway. Always a personal agenda, always the horror stories that trigger his nightmares. Sometimes he meets with Rich, who has become his sponsor. Mostly he stays in bed. His skin boils and bakes and heals. It feels like things are crawling inside it, he says. It goes away for a few weeks. And then it flares again. Recurs. “He had a breakout,” is how you put it to the doctors, to friends, which makes him sound like a teenager with unfortunate acne.
You go back to the internet. You search for “rash,” “skin disease,” “lesions.” Scrolling the images is like playing a slot machine, pulling the handle and begging for the symbols to line up. No matches.
Except there they are again, the pictures of Morgellons disease. The same chocolate-chip pattern of lesions across a forearm. You recognize them the way you’d recognize the pattern of freckles on your child’s face.
* * *
The literary festival I’d been invited to was in the fall, in a sleepy, green New England town with a white steeple and a dust-colored river rushing with rain. All weekend, the rain came down. I left Aaron and the boys in the hotel. The kids had their own adjoining room with twin beds, topped with Halloween gift bags when we arrived—spider rings, skull tattoos. Aaron wasn’t feeling great, but the kids were content watching Scooby-Doo and eating candy corn when I took my umbrella and ventured out to the library, where Leslie Jamison was reading from her new book, The Empathy Exams.
I’d seen it everywhere, the beating heart on the cover with its opened arteries. After the reading, I bought a copy, asked her to sign it, and sat in the coffee shop next door, waiting for the rain to pass and shuffling through the book. I paused on the first page of the second essay, “The Devil’s Bait.”
For me, Morgellons disease started as a novelty: people said they had a strange ailment, and no one—or hardly anyone—believed them. But there were a lot of them, reportedly 12,000, and their numbers were growing. Their illness manifested in many ways, including fatigue, pain, and formication (a sensation of insects crawling over the skin). But the defining symptom was always the same: fibers emerging from their bodies. Not just fibers but fuzz, specks, and crystals. They didn’t know what this stuff was, or where it came from, or why it was there, but they knew—and this was what mattered, the important word—that it was real.
I looked up from the book. Through the window, the festival-goers were bravely dodging the easing rain. I had never seen the word Morgellons outside of the glowing screen of my laptop, and it seemed odd and earthly—real—printed with ink on the page.
Real, I thought. Maybe it is real.
I followed Leslie Jamison into the essay, through the short, contentious history of the disease, and to a Morgellons conference at a Baptist church in Austin, where she meets scores of people who say they have stuff coming out of their skin. They look at the stuff under microscopes. They share pictures on their phones, finding comfort in each other’s symptoms. Their lesions look like all the others’ lesions. They show them to Jamison, too, and she nods, confused: she can see they’re suffering, but she can’t see the bugs.
“Folie à deux,” she writes, “
is the clinical name for shared delusions. Morgellons patients all know the phrase—it’s the name of the crime they’re charged with. But if folie à deux is happening at the conference, it’s happening more like folie à many, folie en masse, an entire Baptist church full of folks having the same nightmare.”
Across the street, the white church steeple was bright under the parting clouds. The rain had stopped. I thought of the boys back at the hotel, felt the restless distance between us, the familiar tug of them. Were they okay? I wasn’t a wife and mother who lounged in coffee shops without a decent excuse. And yet the book was keeping me there. The moment felt seizable; it felt important that I sit and read it out. I thought of what it would be for Aaron to be in that room with those people, the disbelieved. To be believed by each other—would it be enough?
And then, halfway through the essay, this.
This isn’t an essay about whether Morgellons disease is real. That’s probably obvious by now. It’s an essay about what kinds of reality are considered prerequisites for compassion. It’s about this strange sympathetic limbo: Is it wrong to speak of empathy when you trust the fact of suffering but not the source?
I looked up again. That’s probably obvious by now. What was “that”? Clarify your antecedent! I reread the sentence before it. Was it obvious that the essay wasn’t about whether Morgellons disease was real, or was it obvious that Morgellons disease wasn’t real?
I could feel the answer in my chest. It was the latter. My heart felt like the heart on the cover of the book, fat and sloppy, pumping out shame.
I had wanted the essay to render my husband’s suffering real, to be delivered the diagnosis no doctor would, but Jamison expected the reader to see with reason and clarity what the CDC saw, and the patients couldn’t: it was all in their heads.
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