He says he wants to be close to the outlet. His phone keeps losing its charge.
* * *
You find a therapist. You are smart enough to find a therapist. Someone for you to talk to. You haven’t had one of your own since Charlottesville. This one, like your last one, is a redhead, but she wears Birkenstocks. Your theory that the Birkenstocks with three straps were specially designed for therapists is, you are pleased to discover, actually really true. She wears flowy pants and has a big purple backpack at her feet at all times. She fights to keep her hair out of her eyes. Where was that folder, her pencil? Into the purple backpack she plunges a searching arm. You love her immediately. She is the gentle-voiced, grandmotherly version of you.
You tell her about the midnight trips to the hospital. You tell her they won’t keep him. Or you don’t want them to. You’re not sure! She listens, nods, coos her sympathy. You both write things down in your notebooks. At the end of each session, she says, “I realize we haven’t talked much about you.” You both laugh.
What you have is more important, in the meantime. Concrete advice. Phone numbers. Little articles she rips out of local magazines. If you have to take him to another psych hospital, she says, don’t go to Elmira. Go to Binghamton. You write it down.
* * *
One night at the dinner table, Aaron’s having trouble breathing. He’s been in a down period—depressed, tired. Now pain clutches his chest. Last night he was up tossing and turning, soaking the sheets in sweat. You’ve spent two hours making eggplant moussaka, and it sits untouched in front of him. Your dad gets out his blood pressure cuff, and the first number is low: eighty-something. It’s eight thirty on a Saturday night, so your dad puts the boys to bed while you drive Aaron to Urgent Care.
You’ve barely walked in the door and they’re already ushering him to a room. A white man says “chest pains” at any American check-in desk, and he’ll be greeted with the fastest-walking nurses you’ve ever seen. Two nurses are attaching metal disks to his hairy chest. Another wheels in the EKG. Another tries to get her computer to cooperate. Then the doctor bounds in. The EKG checks out, but still, she’s worried. “The fever, the disorientation, the pain in his jaw”—he has pain in his jaw—“you need to go to the hospital, and you need to go in an ambulance. We’re good for a broken finger.”
Before long, two paramedics wheel in a stretcher. One is short and rotund, one is tall and lanky, like a cartoon couple. The tall one recognizes Aaron right away. “Do you all live on Aurora Street?”
You do. Well, you did.
“I was there that night. The false alarm?” He smiles a friendly, toothy smile. He has a crown of very curly strawberry-blond hair. “You signed off, so we didn’t end up taking you. I was glad you were okay.”
Aaron nods, a little stunned. You are not used to such casual disclosures. One of the cops who was there that night is the father of one of Henry’s classmates, and every time you see him, at a birthday party or field trip, he smiles blankly, his lips sealed by some AA-level respect for privacy.
“I’m Leaf,” the paramedic says. “We’ll take good care of you.”
Leaf rides in the ambulance with Aaron while you follow in the car, and you choose to believe him. The casual way he’s brushed over the incident—understandable, happens all the time, you did what you thought was best—makes you feel vindicated, understood. Someone is keeping track of Aaron, a goofily tall guardian-angel paramedic. The doctors will see him, at least. You know he’s not having a heart attack, but still: maybe this is what it takes. Maybe they will keep him, look at him, listen. Maybe an ambulance will get their attention.
In the hospital where twice in the last four months you’ve waited six hours for a psychiatric evaluation, they test Aaron’s blood, run an EKG, take a chest X-ray. Never have they taken such swift care of him. They are worried about him. He is out of it. Can’t keep his eyes open. “Is this normal?” the nurse asks me.
“Well, it’s not normal,” you tell her. “But it’s normal for him.”
After a couple of hours, the tall silver-haired doctor comes into the room and moves your giant handbag from the seat beside you so he can sit. Good sign. Maybe he is one of the good ones.
“We don’t know what’s wrong,” he admits. “Everything’s checking out.”
Aaron is sleeping, or almost sleeping. The hope drains out of me like a fluid.
“Look, he’s very sick,” you tell the doctor. “He may not die tonight, but something is slowly killing him.”
He shakes his head sympathetically. “I’m good at figuring out what’s going on with the heart,” he tells you. “This—this is beyond my expertise.”
You have your little book out, your pencil poised, but what to write down? Nobody can help.
“What does it take to get someone like this checked into a hospital? To monitor him for a while?”
“It doesn’t really work that way anymore, unfortunately,” he says.
He leaves the room. The gentle way he slides the curtain aside sounds like an apology. Aaron is moaning in the bed, grinding his teeth. His eyes are doing that thing where the lids lie half open, the whites staring at me in accusation.
“I tried,” you say. “I’m sorry.”
“Ask him about parasites,” he says softly, barely able to open his jaw.
“You ask him,” you say. “He was just here!”
“They’ll send me to the psych ward,” he says. “Please. Ask.”
What are you so afraid of? Taking up the doctor’s time? Ending up in the psych ward yourself? You go back out to the nurse’s station and ask for the doctor to look in Aaron’s ear. “His ear is hurting him,” you say, “and his jaw.”
Kindly, he comes. He looks in Aaron’s ear. All clear. All fucking clear.
“I know this might sound crazy, but we’re just trying to rule stuff out. Could it be”—you take a breath—“parasites?”
Again, the sympathetic shake of his head. “We don’t really see that.” If it were parasites, the whole family likely would have them. “Well, there’s Babesia.” He crosses a leg. “But unless you’ve traveled to a tropical country in the last thirty days, we just don’t test for parasites.”
F/U with GP, the discharge papers say.
It takes you a minute to realize that F/U stands for Follow up and not something else.
Together you do the midnight walk of shame through the dim waiting room, empty but for the blue glow of the TV.
* * *
The next time, you’ll be prepared. You won’t leave the hospital without having him admitted to the psych ward. You won’t leave without answers. Be strong! Nerves of steel! Don’t back down! You remember the way you let your firstborn cry it out when he was a baby. You probably wouldn’t have been able to do it for long, but the volume was muted on the baby monitor and you didn’t realize he’d been crying—for how long? Never mind; he survived. Your husband will survive, too. It’s for his own good.
Two weeks later, when he’s breaking out and freaking out, you convince him to let you drive him to the hospital in Binghamton. Maybe they’ll have more beds, you reason, more resources, in a bigger city, maybe you can start fresh in a place where he doesn’t have a chart a mile long. But you forgot to ask the therapist which hospital in Binghamton. Was this the right one? When you arrive at the ER, while Aaron uses the bathroom, you walk to the desk and whisper, holding back tears, “My husband has delusional parasitosis. He needs help.”
The nurses escort him to the only empty bed. It is clear right away that you have made a mistake. Everyone in the ER appears to be in worse shape than he is. This makes you feel comforted and also deeply disturbed. Patients crowd the room in their beds, in their gowns, talking to themselves, talking into their phones, begging for help. One woman is trying to reach her father; she needs a ride home; won’t he come pick her up? A police officer who looks no older than twenty-one is sitting at a desk reading a newspaper. Another man, in his street clothes, is si
tting up on a bed rolled into the hallway. There aren’t even rooms, per se, just a bunch of beds with curtains drawn around them in various states of enclosure, screeching along their rods. You feel at once shocked and sympathetic and stupid—that your privilege extends to your access to the Ithaca hospital, which in hindsight seems absurdly elite, with its organic vending machine in the waiting room.
“Are you always so … restless?” the nurse asks Aaron, taking his blood pressure. He’s just nervous, he says. He tells her he has parasites. He says it kindly, a warning, but he is crawling out of his skin, can’t stay still, gets out, paces, rocks, until she guides him back to bed. When she leaves, Aaron begs you, “Do not tell her I’m on Seroquel.” He wants a clean slate; he wants them to look at his skin, not his brain. Wait with him; assure him; talk to him; try to keep him calm. He is talking to you about bugs, and the patient behind the sheet beside him, no more than six feet away, begins to talk back. That shit is for real! she tells him. Those bugs will get you. He is with it enough to give you a look that says That woman is bat shit crazy. Where is the nurse and what is wrong with this place?
You stay with him until you can’t stay anymore. Then you run to the parking lot and call Jen. Jen is a therapist! She is tough as nails, she takes no shit. You are in a part of the parking lot that looks like the sad place behind a grocery store, where the trucks come to deliver the food into giant doors. Cry into the phone, “I can’t do it! I can’t leave him here.” Listen as she says, “Yes, you can.”
When you try to get back through to the ER, the doors are locked. “You’re going to have to wait,” the receptionist tells you. “We have a coronary situation.” Through the glass panels of the swinging doors you can see an enormous man lying on his back on a stretcher, half a dozen people swarming around him with oxygen and paddles and beeping machines. Does this hospital have no proper rooms? It conducts its coronary procedures in the middle of the entrance? The man lies unmoving. There is no way around him. Sit in the waiting room and wait. Close your eyes and breathe, try not to panic, try not to worry about what’s happening back there. If you leave, and they sedate him, he will never forgive you.
Finally, you’re allowed back—what has happened to the man?—and your husband is in the same state you left him in. The nurse pulls you aside and says, “Let’s have a chat.” You duck around the corner and, when asked, give her the full list of your husband’s meds. How can you not? They need to know about interactions; they need to know his history. “He needs to be evaluated,” you say. “There’s something very, very wrong with him. He wasn’t always like this. Look at his skin, look at his head, test him, scan him. Please.” But as you say it, you feel it: you don’t want him here. This place is scary. In the hallway, the man in his street clothes is still yelling from his bed. “Who called me a pedophile?!” he demands. He looks at you and yells, “Did you call me a pedophile?!” Do your best to ignore him. Ignore the fact that this place can’t help you. “I’m sorry,” the nurse says to you. “We can’t help you. We’re full.” Maybe if he was admitted, they could transfer him to a state hospital. But they may not have any beds, either. The man demands again to know if you have called him a pedophile. The nurse, arms folded, again apologizes to you. You are not one of them. You are, like her, one of the sane ones. “Full moon,” she explains.
In twenty minutes, you’ll be discharged, driving your husband home with an antibiotic for “cellulitis.” You’ll be crying from relief and whatever the opposite of relief is. He’ll be sitting in the passenger seat, peeling off his sock, hiking his bare foot up on the dashboard. He is wiggling, twisting, worrying the sores on his ankle, on the back of his legs. Nothing has changed, except he does not know that you have tried to betray him and have failed.
Ten minutes from home, his foot presses against the windshield with such force that the glass cracks. You shriek, skid a little, right the car. “Holy shit,” he says. “I’m sorry. I’m so sorry.” The spiderweb looks like a stray rock has struck the car from the outside. Later, the insurance company will ask you to measure it, will ask you to explain. How to say that the pressure is coming from the inside, that something terrible wants to get out?
IRONY 5
In the other waiting room, back in Ithaca, while I am still waiting for Leaf to fetch me and tell me Aaron has arrived in the ambulance, while I am still nursing my cautious hope, a commercial plays for an NBC drama. It’s a new fall show I haven’t heard of before, New Amsterdam. A handsome young doctor in a white coat tells a room full of handsome doctors in white coats: “You know, we all feel like the system is too big to change. But we are the system. And we need to change. Let’s be doctors … again.”
I snort at the empty room.
“They’re not going to let you come in here and just … help people,” says another handsome doctor.
The handsome doctor winks. Is he winking at me?
“So let’s help as many as we can before they figure us out.”
IRONY 6
Driving the kids to the trampoline park in Syracuse, I spot a billboard on the unfamiliar highway. Above the airbrushed face of a sultry brunette are the words:
P A R A S I T E F O U N D.
The car hurtles forward. My eyes adjust. Just as we are about to pass, the letters fall into place:
P A R A D I S E F O U N D.
A gentlemen’s club.
From the backseat, Henry asks, “What are you laughing at, Mom?”
SEVEN-YEAR ITCH
It’s been seven years, you both realize. It has come to a head, in a way. For a moment, he’s there, your husband, looking you in the eye, as amazed as you are: seven years.
Then he is lost to his own reflection. His eyes hang inches from the bathroom mirror. He is waiting for something to move, in his eye, his eyebrow, his sideburn. He strips down, displays an armpit to the glass. He says, “I feel like my hair is not my own.”
* * *
The thing is: for a long time you thought they were unrelated, what was happening in his body, what was happening in his mind. They were like wars being fought on different continents. Now you see them with the full rush of historical hindsight. Both armies are battling the same invader.
You have no more time to waste. Check out books at the library. Check out real books and audiobooks and e-books, about the brain and about skin and about infection and chronic illness, books that promise you will get your life back if only you read every page. Read articles. Articles sent to you by friends who swear by their dermatologists’ advice and articles found on Wikipedia and WebMD and in the black hole of midnight, on Tripod pages made in 1998. Develop no system for organizing the articles whatsoever. Keep at least seventeen tabs open at all times. Email yourself the articles, with cryptic subject lines and lots of question marks. Stay up so late you feel sick. Oh well! The kids aren’t in camp because you can’t afford it. You all sleep in. Your sick house family will survive. The children eat a lot of toast and watch a lot of SpongeBob. Your dad is there, thank God, watching SpongeBob with them, eating toast.
This is the summer people are talking about Lyme disease. You read about it in Total Recovery, again and again, which, really, is a good book. In the case histories, there is always something invisible underlying: toxic mold, an amoeba in the gut, the trauma of a car crash, Lyme, Lyme, Lyme. Your child’s friend gets Lyme. Your friend’s child gets Lyme. They live in Syracuse and Connecticut, Vermont and Long Island and Maine. More and more in Ithaca, right here, children absent from summer camp, friends cancelling their summer trips. One child is bitten by a tick while hiking, a friend while picnicking in a downtown park. They feel terrible. They’re achy and tired, their brains fogged. They’re on antibiotics, all of them, some for a week or two, some for three or four. Some get the red bulls-eye rash, some don’t. Most get better, some don’t.
Read Sick, Porochista Khakpour’s new memoir. Make avocado toast—toast is really all your family eats—and read it on the deck. Dog-ear all the p
ages that give you goosebumps. The drugs, the pain, the insomnia, the racing thoughts, the feeling of being lost in one’s own house. Remember the time your husband said he felt his brain was like a slot machine? “Meanwhile, no one knew what it was that was physically wrong exactly, just as they could not pinpoint what was wrong mentally. My anxiety and depression seemed to scissor each other in ways that mimicked bipolarity.” Yes! you think. Yes! The diagnosis, finally? Lyme disease! Her doctor told her that “you hear a lot about the joint pain and muscle aches, but that the first symptoms of Lyme for most are anxiety, depression, and insomnia. The sort of insomnia that does not let up. The sort of insomnia that does not respond to conventional medication. Lyme attacks soft tissues in the body, and the brain is one of its favorite organs to feast on.” Squeeze your eyes closed, pound your feet on the deck in recognition and fright. Picture it: the bacteria devouring your husband’s brain. If this isn’t it, what is it?
Go to a NAMI meeting downtown. National Association for Mental Illness. You’ve been to Al-Anon meetings; it can’t be so different, right? Aaron knows you’re going; he is, amid the chaos, grateful for your concern. The people there talk about their grown children, mostly, children lost or nearly lost to schizophrenia, overdoses, suicide attempts. Should they call the police for a welfare check? Should they call the police for a restraining order? You want to gather them all up and let them gather you in their fleece vests and flowing skirts. When it’s your turn, describe your husband’s symptoms. “I thought it must be bipolar disorder,” you say. “It comes out of nowhere, then goes away, then comes back.” You are trying to get help. You can’t get him admitted anywhere. You don’t know where to begin. They listen—they are, as at Al-Anon, mostly sixty-year-old women—and they nod in solidarity over their Styrofoam cups of coffee.
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