“You have ten minutes to go to the bathroom, get out of your costumes, pack them up, get into your work clothes, and meet back here,” Tommy tells us.
“Then what happens?” I ask.
I get a hard look from Sunshine. “You’ll find out. Go!”
And I do.
* * *
We pack the show up through the night, a task I thought would be easy since we’d set up less than two weeks before, but I can’t remember how this dance began. I have no idea how to put anything away. Each task I’m assigned—dismantling the headless chair, folding the tent walls—require precision to ensure the objects stay in good enough shape to set up again, and physically fit in their exact space in the truck. No room for screwups. The next few spots we’ll play have shorter runs—just five days performing. I’m glad that the time between setup and teardown will be shorter; less time to forget how it all works.
I want to get my hands back on the electric chair, to feel its magic as I dismantle it, but I keep getting directed elsewhere.
Radios blare from every joint and we work straight through until 5:15 a.m.
“Get a few hours of sleep, if you can fit on your bunk,” Tommy says. “We pull out of here at nine a.m.”
* * *
Sunshine has a vapor cigarette clenched between her taut, bony fingers as she grips the steering wheel. The jump to Ohio is four hours, four luxurious hours where we can lay our heads against the plush headrests of the van and take in the rumble of the plastic clasps on the windows as they pound out the beat of Sublime turned to max volume.
We stop for pizza. Everyone orders cheese, I assume because it’s cheapest, but it comes out that nearly everyone is a vegetarian. All my carnies are vegetarians, I think, delighted with this little phrase I’ve just invented. I say it, quietly, to Cassie on the seat beside me once we’re back in the van.
Not all, she corrects. And not mine. And not carnies.
“We are not carnies,” Cassie says. “Well, I used to be one. But not anymore.”
“That’s right,” Sunshine says from the front seat, very matter-of-factly. “We’re showpeople. There’s a huge difference. We’re above the carnies.”
Showpeople. Has a nice ring. But so does carnie.
“There’s a very clear pecking order, and you should know it. Top line is bosses, of course. Then showpeople. Then carnies. And the big carnie rivalry is between game and ride jocks. Ride jocks have more power, because they can let pretty girls go to the front of the line and they gather bigger crowds, but game jocks make more money. Easier to swindle the marks. Foodies are at the bottom, obviously, though some of them make a killing. Don’t call a performer a carnie, okay?” Sunshine says. “Like, ever.”
“Right,” I say. “Sorry.”
I want to change the focus from my blunder.
“How long have you been a vegetarian?” I ask Spif, who is sitting behind me in the van and twisting his septum piercing with both sets of pointer fingers and thumbs.
“A while,” he says. “I can’t eat animals because I know they don’t want to be eaten.”
I nod, start to turn back around in my seat, but he continues.
“The first time I ate mushrooms, I was tripping and walking around outside and I found a bee. He was in a pool of water, kicking his legs and flailing around. I bent down to get a closer look and the bee started talking to me.”
“What did the bee say?”
“I can’t tell you. Don’t remember. But we had a whole conversation, back and forth, talking about all kinds of shit. I pulled him out of the water. I knew as soon as I finished talking to him that I could never eat another animal.”
“I only eat fish,” Sunshine adds. “And alligator. Did you hear what the pope just did, though? He proclaimed that rats were also fish so that people in South America could eat capybaras on Fridays.”
Our van was following the sun, west along highway 80 and then 90, skirting the base of Lake Erie as we passed the kind of strip mall that was indistinguishable from every other strip mall all over America. The TGI Friday’s, the China Buffets, the Starbucks popping up when we whizzed through an affluent area—never near the fairground. I’d know we were nearing the grounds when I started to see pawnshops, Quik Marts, or old factories. The carnival was not a place for the wealthy, though the cost of an evening there could quickly add up.
“You know what a group of ferrets is called?” Pipscy asks from the back seat. We shake our heads. “A business. When I get out of here, I’m going to have a business of ferrets business.”
We laugh, and keep on to Ohio. I’m trying to play it cool, but I think I might be falling for my carnies.
THE SOFTEST SKIN OF ANYONE IN THE ENTIRE WORLD
Two years and eight months after the stroke
June 2013
Davy gets up each morning in the dark to pay bills and schedule appointments. He researches how to visit a Venetian glass museum in a wheelchair. Tours of the David for the handicapped. The opera. Bathrooms in the cruise ship’s dining area. Size of shower in the room. He clicks and scrolls between websites, writes notes, scrolls, reads, writes notes.
When light comes in the window, he goes back into the bedroom and sits on his wife’s side of the bed. She stirs, her good leg bending and straightening. “Morning, cutie,” he says, leaning low to wrap his arms around her torso before he pulls her upright into a seated position and shifts her hips so her legs reach down off the bed.
“Na na na,” she says quietly, hoarsely. After four months with the tracheotomy, it was removed and she could make sounds again. She’d grown strong enough to swallow and cough on her own, lived with Davy except for when she had to go back to the hospital for an emergency.
She presses and releases her lips with little smacks just after she wakes every morning, like each new day has a taste she wants inside.
With one arm slipped beneath her good arm and one arm reaching over her bad one, his body stands in for her right side and they pivot to the wheelchair. There were disasters and then emergencies and then crises, and now this day after day. It is quiet.
“She has the softest skin of any person I’ve ever known,” he told me when I was young, when I was a teenager, recently at the hospital. “It’s surreal. Touch it. Here. No, touch it.”
As an act of kindness, or apology for tragedy, a lot of people give my mom lotion. It comes in the mail, in birthday packages, appears on their doorstep. Maybe they know about the skin. Want to help preserve that miracle. But I find myself, when I help clean out drawers, with an armload of lotions, lilac, eucalyptus, rose, fresh linen, in glass bottles and blue jars, in plastic tubs, oblong or circular, organic, elixirs, Chinese, tubes for the eyes, for daytime, for scars, for nighttime, and the metaphor of trying to carry so much is too obvious and also fundamentally right, that leaning stack piled against my chest, against Davy’s, even though we know, we know, it will tumble.
* * *
The house they rent, close to the house they sold, is entirely covered in wood slats like the hull of a ship. It seems that they might always be about to embark. My mom is in her wheelchair. Not Bubbles, the off-roader, but the regular insider called “the chair.” She spends all her time there, except for when he lifts her onto or off of the toilet or into or out of bed or the car. Occasionally I lift her onto or out of something, but I often feel like an intruder. There’s so much tenderness required for transporting a paralyzed body. Sometimes I hide in the other room when it is time, because I am a small, scared person.
There had been a trip to the emergency room two months earlier for the wound on my mom’s head, which wouldn’t heal right. It was where they’d permanently cut away the bone plate to allow enough space for the swollen, bleeding brain. The incision would not heal. The skin around it was dead. Months and months. Infections came. And then she started having seizures. A month before I leave for the sideshow, she’s in the hospital for seizures. They are scheduled to leave for Italy three months after th
at.
A week before I leave for the sideshow, she is back home. The days become regular again. Bills. Laundry.
My mom’s back is to me, wheelchair scooted right up against the couch. She stoops slightly forward and then straightens up, her left arm disappearing in front of her and then arcing out wide as she straightens again, a gray T-shirt between her fingers. In addition to relearning how to do many tasks as she slowly heals, she must learn to do them with her left hand.
A pile of clean laundry lies on the couch in front of her, T-shirts and socks and bras and sweatpants that I had been planning on folding very soon. Any day now, in fact. But here she is, the mother I spend hours convincing myself isn’t the same person living inside her body anymore. Because what would that be like? How would it be possible to carry on?
Here she is with a rumpled gray T-shirt between her fingers, shaking the wrinkles out.
I hold my breath. She shakes a lot, little spasms. Sometimes big ones. Seizures. I haven’t seen anything like this in almost three years—my mother, right there, completing a chore.
She sets the T-shirt down on the couch, away from the pile of laundry, and smooths it flat with the palm of her hand. She cannot see me behind her. Here is her bony hand, the one that was always covered in different shades of dye from her textile business, and more recently, the hand that was hooked up to so many IVs that it took on its own face and attitude, a medical Medusa.
That hand was the only thing that moved in the first months when it didn’t appear she’d ever really wake back up. I watched it like watching would conjure a prayer. Watched it twitch against the starched white hospital sheets, move slowly up from her side, trembling, toward her head to touch the skin covering her brain on the half of her head where her skull had been removed. Watched it touch her eye—here, now here—dried blood, dried rivulets of brain fluid against her temples. I’d watch that hand make its way back home to her side, tremble, and begin it all again, that journey up to try to understand what it was missing, here and here and here. I’d grab it to kiss it still and whisper terrible apologies and the hand would rest calm and motionless for a moment before it pulled away, readied to move on. She moved on and then they made her come back.
She spent a full month in the ICU after the stroke. Each day was the last day. Then the new last day.
Six weeks after the stroke, when the doctor got her to sit up in a chair, propped up by pillows on all sides, for thirty minutes straight, we clapped like mad.
Two and a half months after the stroke, on New Year’s Eve, she waved a noisemaker we’d brought in to celebrate. Yes, yes, let’s celebrate! Davy, my brother, and I said. She started physical therapy. Sitting up without pillows. Standing up with the help of a few therapists and slings.
A brain infection sent her back to the ICU.
Then she had to start all over again.
* * *
My mom’s palm flattens each crease with careful rhythm and precision against the couch. I don’t help. I want to see what she can do. If she completes the task, then my assumptions about what she is capable of are wrong. Then I am underestimating her.
It took me a few days after she had her stroke to say the words I love you. They were fire in my lungs. I knew they needed to come out. I love you, I said, very quietly, the words slurred. I tried to say it more. I love you, when I left the hospital for the day. I love you. I was just never sure if she could understand it.
She folds in one worn sleeve and then the other. Smooths the creases. Smooths the collar, evens out the sides. Her other hand remains tucked unmoving in her lap but this hand is grabbing the bottom of the T-shirt and folding it up against the shirt’s shoulders, creating a rectangle perfect for stacking in drawers, this little miracle of normalcy on a couch in a wooden house on a cool spring evening. She cannot talk or walk, but this. Here it is, a chore. Ordinary life.
* * *
We talk a lot about packing. Though I leave for the sideshow two months before my parents leave for their trip, I spend a lot of time navigating the half-packed suitcases strewn across my parents’ house. Day by day Davy prepares carefully for The Trip—his term for the long, dangerous journey he is planning—but that doesn’t assuage my unease.
One afternoon, my mom is in the bedroom napping.
“I just want to see her face,” Davy says, “seeing the bridges in Florence.” He is arranging pill bottles in the outside pockets of one of the suitcases. To fit a four-month supply of anticonvulsants, antihypertensive agents, osmotic diuretics, antibiotics, pain management medications, fiber pills, and vitamins, there are giant Ziploc bags filled with the translucent orange tubes, and white tubes, brown plastic tubes, bottles in all shapes and sizes filled with tiny morsels of health. Another suitcase is entirely filled with adult diapers. The right size is hard to find, and instead of risking it, he is bringing the entire three-month supply. There’s a bag with orthotic braces. There’s a bag that is used exclusively to hold the second wheelchair, Bubbles. There’s just one bag with their clothes: seven outfits each, Davy has determined, stuffing into one of their toiletries bags a large bottle of Dr. Bronner’s in order to do laundry most nights. Redundant thumb drives with copies of their medical records, advance directives—of which my brother and I both have copies—tucked into various pockets. Audio-recording equipment for one of the bags so he can capture the sounds of the streets around them.
Eleven bags total.
Over 250 pounds.
Plus the sweet beauty who will be sitting in the chair.
“It will make all this worth it,” he says. “Seeing her face see the water in Venice.”
He is counting out the week’s pills into the seven-day strip of containers. “There’s a secret spot in Rome I found when I was nineteen. It’s off the main road in one of the squares. I wandered off there when I was alone, when I was just a teenager. I bought some dope off a guy in a back alley, and, almost by accident, ended up smoking in this hidden garden with broken sculptures. It was the most beautiful place I’ve ever been. That’s what I want most on this trip. I want to find that place that I used to think was magic. I want to show Teresa that magic.”
DAUGHTERS
Day 20 of 150
World of Wonders
July 2013
Our caravan—one semitruck pulling the show, the fifteen-person passenger van pulling Tommy and Sunshine’s trailer/the office, and Red’s van—pulls into a small fairground surrounded by houses that have metal bars over their windows. We’re in Maumee, Ohio. A few joints are here already, unfolding their giant wings, pinning and joining and stretching out for the imminent arrival of little feet, but much of the fairground is still empty and waiting. It’s much smaller than the last spot. We sit in the van while Tommy talks to the boss canvasman. We aren’t supposed to interrupt the boss when he is talking to other bosses, or get out of the van when we aren’t told to, or walk near other joints during setup, because it is a dangerous affair that requires hard hats, which the people setting them up only sometimes wear. Those metal pieces—which I want to think of as spring petals unfolding from their metal stamens—actually swing and clang and break and people get hurt, badly hurt, during setup. The general rule is to stay out of the way.
The afternoon light is waning into a pale gold, and unlike the paved, smooth Butler fairgrounds we left just that morning, 230 miles back, here dirt roads carved into grass act as the midway lying between huge floppy trees with bright green leaves, willows maybe, and little yellow dandelions. As we wait, flecks of firefly light burst around us. On these new fairgrounds, I will be better at eating fire. Less afraid of snakes. I’ll lure more people into the tent. I’ll get better at what I need to do, focus more acutely, so my brain has less space to catastrophize elsewhere.
We’ve been on the road together two and a half weeks. Because our first fair was so long, we’ve put up the show only once, though beginning setup this time feels a little easier, a little less intimidating, even though we are all
tired.
A dirt bike pulls up to our lot bearing a huge guy who wipes his face with his forearm, spits, and lumbers over to the van on thighs the diameter of a steering wheel. The boss had posted a Craigslist ad for a new ticket guy, since he’d had to fire Snickers. The new guy is stopping by for an interview, which is basically a way for Tommy to see if he’ll be:
a. strong enough to potentially move heavy things, and
b. tough enough to actually stick around and do it.
The guy approaching us is even bigger than Big, Big Ben, our working man, and the prospect of adding a big guy to our team is alluring, another bull to take some weight and get that tent up fast.
Tommy sweeps the new guy out back to talk, and walks him around and through the tent like the boss at a construction site, gesturing with his hands and pointing out items they pass, items that require work. He’s sussing the new guy out, watching the way his body moves. I wonder if the working man job is one that has to be done by a man. The women on our crew, after all, do a lot of hard labor.
The gendered divisions of this work were explained to me my first full day with the World of Wonders, when we went to pick up our show from where it had wintered in Gibtown. Our van pulled into a junk storage lot, several acres of wild Florida vines and trees where carnies park big rigs and half-broken Ferris wheels in the off-season. The rust of a once-yellow bus peeked out from years of moss and low-hanging kudzu and I heard there was a man who lived somewhere in the middle of it all, watching over the big machines that were brought here to rest. There was no way to see the edges of the place.
Though the yard was full of rides and a few old circus cars, no other sideshows winter there because there are no other traveling sideshows. Traveling sideshows are a cultural fragment stomped out by science and social progress. Public perception began shifting at the end of the nineteenth century, as more information about the medical conditions freak shows displayed became known, then even further with disability-rights legislation in the 1950s and ’60s, as restrictions were established on who and what and how a person could be displayed onstage. Nowadays a few nightclub shows include sideshow performers and travel an adult circuit. There are still two stationary sideshows—one at Coney Island and one at Venice Beach, though the Venice show was just booted from their home on the boardwalk.
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