The fellowship hall of the Unitarian church smells like aftershave. When Mike spends all day in his garage studio, sometimes he goes overboard with cleanup before he comes to the artist collective’s meetings. The odor gives me a headache, so I busy myself making a fresh pot of coffee in the percolator, and finding straws and Styrofoam cups. Everyone in the artist collective has an unconventional body, and half of them use wheelchairs and want a straw for ease of sipping.
I sit between my girlfriend, Lee, and Naomi, who uses a wheelchair since she had polio when she was 9. Naomi started the artist collective because she wanted to experiment with abstract expressionism, not draw happy little landscapes like everyone expects if you’re an artist with a disability. These are people who want a serious critique. I shake two Tylenol into my palm and offer them to Naomi when I see her grimace. She gets muscle spasms. In my family, half the women develop arthritis in their twenties, so I learned to carry pain relievers, use them as birthday gifts, and put bottles in Christmas stockings.
“Thank you, Mattie,” mouths Naomi, letting me place the pills on her tongue before she sips from her coffee straw.
“Me, too,” says Lee, nudging my other side. She was in a car accident ten years ago that messed up her spine, so she uses a cane sometimes and has the kind of chronic ache that makes doctors shrug and tell her to take more drugs.
After everyone has coffee, we launch into the business part of the meeting, discussing our latest projects:
Naomi’s oil paintings of the sensation of water spurting from a garden hose.
Gerald’s watercolors of the bright noise of a Hendrix concert he attended in 1968 (rest in peace, Jimi).
Pam’s fabric collage of circles with pie-piece chunks cut out of them. She says it represents her latest gynecological exam.
Mike’s black and navy oil painting with swirls of yellow coursing through the canvas like lightning. He says it’s one of his dreams about serving in Vietnam. He’s been painting them since he returned six years ago with a wheelchair and an attitude.
My portrait of my mother sitting at the front of her classroom, teaching from her wheelchair. I wanted to capture her face as stern but smiling. Her arthritic joints shine like gilded marbles. I’m trying to make our pain visible, though I worry it’s too pretty on this canvas. My next attempt could be darker perhaps, but I don’t want it to seem like we dwell in a life of grays. Depicting disability is always difficult, even when I pray to Frida Kahlo, the patron saint of the surreal woman’s body. Her chips and cracks only made her more beautiful, like the painting in which she represented her broken spine with a Greek column.
After a round of comments (Gerald loves glowing joints, Naomi thinks they should be larger), everyone drinks more coffee and cheerfully bitches about their day: problems with the yappy dog next door, an attendant who’s always late, the latest rattle in the car engine. These are the kind of friends I’ve never had until recently, ones who take me seriously when I have an arthritis flare and don’t think I’m too young to be in pain. Lee and I both had that problem before we moved here, but it’s wonderful to be in the company of other people who take us and our bodies seriously.
We also love the artist collective because no one cares when we hold hands. Naomi is lesbian and forever talking about this or that woman she met at the gay bar, and Mike’s brother is gay (though Mike is the only one in the family who knows). Last year, homosexuality was taken out of the DSM, so psychologists aren’t supposed to consider it a mental illness. It’s one small blessing in this time of Vietnam and Nixon, but most people still figure we’re sinners. Naomi just says Lee and I look cute together.
“The new rehab counselor at the hospital is fantastic,” Naomi says after I get our second round of coffee. “She came here with a bunch of West Coast hippie ideas, and has pissed the rest of them off. The first time I met her she asked about my sex life. None of the other counselors have said the word ‘sex’ to me, much less suggested that I could have it.”
“Some of the vets brought it up in group therapy,” says Mike. “We were afraid we wouldn’t be able to perform and our wives would leave. The asshole therapist said the bedroom wasn’t his department. I learned more talking with guys after rehab, when we had a beer.”
“Walkies don’t think we fuck,” says Naomi. “Even the therapists.”
“Mike won’t let me talk about fucking if we’re in public,” says Pam.
“Just the word,” says Mike. “You can use other ones.”
“Getting it on,” says Gerald. “Humping, shagging, making the beast with two backs, shaking the sheets, making whoopee, boning, boinking, threading the needle, playing doctor, making babies, doing the deed—”
“Thank you, Mr. Thesaurus,” Naomi says.
“I developed a list since using the same term all the time gets boring,” Gerald says. He’s been writing wheelchair romance novels and sending drafts to a publishing house in California for the past five years. They mail back polite rejections each time.
“The editor says I’m close,” Gerald sighs when I ask if he’s made progress. “He doesn’t want the book to start in a hospital because he thinks that’s too depressing. I’m writing what I know.”
“Has anyone written a romance novel about people with arthritis?” I ask. “Can turning up a heating pad be sexy?”
“Anything can be sexy,” Gerald says.
“But sexy pain is the kind of pain you want,” I say. “The kind of pain you don’t want is . . . painful.”
“It can still be sexy,” says Lee. “When you rub someone’s back or run a hot bath for them or listen when they say not tonight because they feel like shit. Listening is sexy.”
“I’ll put that in the arthritis romance novel,” I say. I’d never try to write one myself, but maybe if I say this loudly enough, someone else will.
“By page five,” says Gerald. “You have to establish the terms.”
I never asked what love stories Gerald found in the hospital, but I bet he has material for several novels. He had polio when he was 15 and lived on the fourth floor for eight years since nobody in his family could manage his care. His aunt brought a used typewriter to his room, and he typed with a mouth stick and later his hands for an hour a day.
“I made friends and had sympathetic nurses,” Gerald told me, “but it took five years to finish high school. Then we got a new nurse who knew about government assistance for college. She worked with me on my application letter, which got me into school and a different hospital.”
The university hospital’s rehab program was better, and nurses trained him how to work with an attendant and strengthen his muscles. By his junior year, Gerald was strong enough to only need a respirator at night, so he got his own apartment with an assistant to help him get to class, see to his personal hygiene, and fix meals.
Gerald studied for an art degree since he had enough dexterity to paint with his mouth or with wrist splints, but after college, he could only find a job in the hospital’s pottery workshop painting decorative plates. In the meantime, he started writing the Great American Wheelchair Romance Novel. His current project is about two people who meet in rehab—a quad who uses a wheelchair due to a car accident, and a polio who sometimes uses a wheelchair and sometimes leg braces.
“The ear-licking scene is three pages long, but I’m highlighting foreplay and ways to be innovative with one’s tongue,” says Gerald.
Naomi purses her lips. “I’m not sure if that sounds sexy or gross.”
“It’s both a literary work and an educational effort,” Gerald says.
“Well, we do need more of those,” says Naomi. “The therapists certainly aren’t helping.”
* * *
In high school I didn’t think about sex, too nervous to even invite someone to a movie. I liked girls and boys but didn’t realize those feelings were romantic until freshman year, when I fantasized about the girl who sat next to me in geometry. The revelation of desire didn’t help, since I couldn’t even say a couple non-awkward sentences to her between classes. Everyone was looking for a life partner so they could get married and have kids. I didn’t want that, but I was terrified of living in a lonely apartment with one chair at the kitchen table.
When I was a teenager I thought romance was candy, kissing, and cuddling on the couch. I didn’t trust myself to imagine much beyond second base; sex education was a joke and intercourse seemed scary and painful. Nobody talked about it except for guys, who snickered behind their lockers and called it banging.
I had a couple boyfriends and one very secret girlfriend when I was in my early twenties—each lasted about six months—then I stumbled into my relationship with Lee after years of friendship. I’ve always felt easy around her. We met in the break room at the bank while having Tylenol with our coffee, starting a discussion on pain that led to us going out for a beer. She was still dressing like a guy back then. It took four years before Lee quietly explained that she had the mind of a woman and wanted to live like one. She was trying to start hormone therapy and find a doctor who’d prescribe them—not an easy task—and she was still deciding what else she needed to do to feel comfortable.
“Maybe I’ll get surgery someday,” she said as we sat side by side on her couch and she peered down at her hands. “But I can’t hide who I am forever. It’ll drive me up the wall.”
I was quiet for a moment, not sure what to say, then I put my arms around Lee and hugged her shoulders. She was my friend. I loved her. The way her mouth trembled meant she was trying not to tear up. If I tried to find words they would have been sappy or stupid. I worried when her shoulders trembled and she started to cry, but Lee folded her arms over mine. We sat like that for a while, embracing.
Maybe her willingness to share that crucial part of herself was one of the reasons I was drawn even closer to her. No one had gifted me with such an important trust before.
We developed a weekend rhythm—Lee dressed in a skirt and blouse and padded her bra, while I relaxed into jeans and a pair of sneakers. We drove an hour north to a bar in Toledo where we could ease into a booth and have a drink, and where Lee could practice her female voice, which she said was tricky.
“It’s not just speaking in falsetto,” she said. “It’s the cadences, the pauses, the rhythms. It’ll take a while to figure out.” After months of practice, Lee ditched her loan officer career and hefty paycheck. She asked me to move four hours south with her, where we could rent a bedroom from her Aunt Florence, who’d somehow known to call Lee “she” before Lee ever mentioned it.
Some time after that, we decided we were dating.
Lee has as many questions about how to be a girl as I do, only she puts on a corset every morning, then labors over her foundation, blush, two colors of eyeshadow, eyeliner, lipstick, and lipliner in a way that makes me tired before I even get out of bed. If I manage a smear of lipstick and daub of blush, it’s a good day.
“You’re cute as a button,” Lee says, kissing my pale cheek while I fuss with the zipper on my skirt. She walks to the kitchen to make coffee, practicing the hip swish that she says she learned from me.
“I have a hip swish?” I say.
“A gentle one,” says Lee. “You’re not supposed to think about it.”
Falling in love with Lee has been strange for all the intimacies I didn’t expect, the way a lover studies your body so they know it better than you do. It would be great material for a romance novel, but the world isn’t ready for our story.
Sometimes when my joints ache I worry about needing too much help from Lee, and feel like I’m constantly pestering her about little things:
Can you open this pill bottle?
Can you help me shampoo my hair in the sink?
Can you rub my hands (again)?
“You’re not demanding,” Lee says when I apologize.
Perhaps she worries about the same thing when she asks if I can help carry groceries from the car because her back aches.
“Of course,” I say.
“I don’t mean to be lazy, Mattie,” says Lee, shuffling after me with her purse.
“I didn’t think so,” I say.
“Are you sure you can get them all? The one with the milk is heavy.”
“It’s a good joint day,” I say.
“Okay,” she says, leaving many words unspoken at the end of the sentence.
It’s romantic to be sick and cared for by a lover for a couple weeks, but in the end of any movie or novel the characters get better or die. They don’t stay in bed for months, unable to work, puttering around the house when they can. People aren’t allowed to do that unless they’re old, and old people aren’t supposed to be the subject of romance novels. They’re another group barred from thinking about sex, like the idea of copulation is supposed to be erased from your mind after age 50.
Good luck with that.
* * *
Pam and Mike would probably look at me oddly if I said they should be a romance novel. They’ve been married for six months, moved in with Pam’s widowed mom four months ago, and have a two-month-old kid. Pam’s mother had the kitchen redone to be wheelchair accessible, with lower counters, no cabinets under the sink, and pull-out cutting boards. The walls are lined with pegs to hang pots, pans, and utensils so they’re easy to grab.
“Don’t know why my parents didn’t get this done when I was living at home the first time,” Pam says. “But Mom didn’t want me to cook.”
Mike sells insurance and Pam has a business altering clothes for wheelchair users, adding zippers and larger buttons, and making skirts less full so they don’t get caught in wheel spokes. When Pam’s doctor wondered aloud if she should get pregnant, neither Pam nor Mike paid attention. Mike lived with his brother while he and Pam were dating, and Mike’s brother didn’t mind leaving the apartment for a couple hours to give them privacy.
Nine months later, Mike assembled a baby care table using an old desk with a blanket on top that Pam could wheel under, and a basin on a lower table that Pam fills with water for baths. There’s space to change Amelia, and drawers to hold clothes and diapers. Pam also has a stretchy band of material that fits around the arms of her wheelchair so Amelia doesn’t roll off her lap.
“I figured Mom would be happy when we told her I was pregnant since she’s wanted grandkids forever, but she was terrified,” says Pam. “It took weeks to calm her down. At first I told her, hands off Amelia because I needed to do things myself, but now when the baby is fussy Mom is a lifesaver. She’s been remarkably good about keeping advice to herself until I ask for it.”
“That must be difficult,” I say.
Pam smiles. “She has bite marks on her lower lip.”
* * *
My mother never pressured me about marriage or family, which made me both relieved and suspicious. The last time I visited we sat across from each other at her kitchen table with mugs of tea, rubbing our knuckles.
“My doctor put me on a different medication,” she said. “I’d like to teach a couple more years, but some days I’m not sure.”
“You had so many students at school—one more kid at home must have been exhausting,” I said. “Did you think twice about being a mom?”
She shook her head. “I wanted a kid. Really two kids, but we were busy and your father spent so many hours working at the club—”
“You never bothered me about having kids,” I said.
“Did you want me to?”
“No,” I said.
“Then what’s the problem?”
“Do you not want me to have kids?”
“I want you to do what you want to do,” she said.
That seems logical but my real question lingers: Is it better for me not to pass this body on to someone else? Does my mother feel bad about our arthritic genes?
Lee says it’s silly to think that way.
“Maybe,” I say. “If your back problems were hereditary, would you think twice about having kids?”
“I’d think twice about bringing kids into a world with environmental degradation, hunger crises, racism, sexism, and the threat of nuclear war before I’d consider back pain,” she says.
As usual, she has a good point.
* * *
The problem with arthritis is that it’s more of a horror story than a romance novel. It’s the monster under my bed, in the closet, around the corner, waiting to strike with its yellowed teeth. I’ll be fine for days then get the gut-punch of a flare, the deep ache in my fingers and toes. Usually it’s when I’ve been busy, or when the weather turns cold or humid. I pop more pain relievers. Use ice packs. Try to read or take a slow walk around the block to help my joints stay flexible.
Maybe in a few years I’ll let myself be subjected to experimental drug trials, romanced by scientists with the promise of arthritis cures. Lee raises an eyebrow when I mention this possibility, but it’s easy to consider when you don’t have much else but Tylenol and steroids.
Lee has a job as a secretary at an insurance agency these days, filing papers and directing calls and remembering to keep her legs together or crossed at the ankles. She’s been on estrogen for the past six months, and embracing her identity full-time has been more exhausting than we expected.
“Every day I shift between feeling defiant and feeling terrified,” she says when I pick her up after work. Lee borrows Aunt Florence’s necklaces, reapplies her lipstick at her desk, and uses the one-person ladies’ room at work, but she lives in fear that she’ll forget to lock the door and someone will walk in. Some nights she’s so tired, all she wants to do is drink tea. Cozying up with mugs on the couch is romantic, but I worry about making an offhand remark that wounds her, about forgetting that what it means to be a woman is different for both of us, and there are so many spaces I can’t understand.
* * *
Pam calls on a Thursday afternoon and asks if Lee and I can take her mom out this weekend.
“Mike and I want to have time with Amelia,” says Pam, “and Mom needs a ladies’ night.”
Lee says we should go roller skating and get chocolate malts.
“Sure,” I say. “I haven’t tried to kill myself with athletic activity for a couple months.” (The last time Lee wanted to roller skate.)
“Do you want to do something else?” She raises an eyebrow.
“No,” I say. “Skating is good.” I shouldn’t have tried the sarcasm.
“You’re sure, Mattie?” Lee says.
“I’m sure.” I like skating, I’m just not very good at it, and it’s a bit like someone who’s allergic to chocolate eating a Hershey’s Kiss. The sweet pain burns for the rest of the day, but it’s worth the taste of agony.
Pam’s mom meets us at the front door wearing navy slacks, a pink blouse, and the weary smile of someone who knows they’re being kicked out for the evening.
“My daughter said pants would be better than a skirt,” she says, like she’s apologizing. Pam’s mom came of age in dresses and nylons, so it might be a bit of a leap for her to go without for a few hours.
I haven’t seen anyone look quite so petrified as she laces her skates and ties the bow tight enough to cut off circulation. I grab her hand to tug her from the bench, and keep her fingers laced with mine as we glide in slow circles around the rink. I like having someone beside me while I’m skating, but Lee swings by and takes my elbow, towing us in (almost) speedy circles while I yell at Pam’s mom to bend her knees.
“Lowering your center of gravity gives you more stability,” I say. After a few seconds in which she softens her stance and doesn’t fall, Pam’s mom lets a slow smile spread across her face. “All You Need Is Love” blares over the sound system, and for three full circles around the rink, she seems like she’s having a good time.
I don’t know what invades her mind then—the loss of her husband a year ago, the ache in her joints, the thought of her daughter and son-in-law and grandbaby at home, the realization that she is an older woman who needs to be babysat—but her face wrinkles like she’s about to cry. I let go of Lee’s hand and skate Pam’s mom to the side of the rink.
“Are you okay?” I say, not sure what to do but ask a stupid question.
“I’m sorry.” She dabs at her eyes with a tissue that was hiding in her pocket. “It’s very kind of you and your friend to take me out.”
“We’re glad to have you along,” I say, hoping I sound honest.
“It looks like fun,” she says. “I wish I were better at skating.”
“I say that every time I come here,” I say, offering my hand again. As we teeter a few more slow circles around the rink, I think about how women in her generation weren’t allowed to enjoy themselves outside of caring for other people. Maybe they were part of a garden club or book club or volunteered at the library, but they were young wives during the war effort and expected to give their all to support family and community. That can be a good thing, but it can leave you unmoored when the objects of your care and affection are gone or grown, and tell you they can care for themselves, so you should go out and live a little. How are you supposed to do that when your upbringing says otherwise?
After skating, I tell Lee we should drop by Gerald’s place and see if he’d like to join us for a chocolate malt. Decadence needs company.
“You’re life savers,” Gerald says as Lee helps him transfer to the back seat of her car. “My evening attendant is nice, but she’s a bean sprout hippie chick who won’t let me have cookies. I think she’s sick of listening to the novel, too. During the sex scenes she corrects my grammar.”
Pam’s mom perks up at the mention of sex scenes. I didn’t expect that.
“You’re a romance novelist?” she asks.
“Yeah,” Gerald says, “but nothing’s been published.”
“Romance novels are my guilty pleasure,” she says. “I’ve always wanted to write one, and I have five notebooks with the first two pages of . . . something. It goes so slowly.”
“Tell me about it,” says Gerald. “When I’m having a bad arm day, I type with a mouth stick. But that gives me time to think about sentences.”
We order three chocolate malts, one vanilla, and Gerald invites Pam’s mom to come to his place for an hour every day to work on their novels.
“My morning attendant doesn’t drink coffee,” he says. “Someone needs to finish the pot.”
“My novel ideas are about old people,” she says. “Ones in their sixties who lost their first spouse and find love later in life. Pure fantasy, eh?” She smiles.
“Canes are very sexy,” says Gerald.
“I want it to be sexy and romantic and . . . more than that,” she says. “Some days you get mad at the people you love for needing so much from you, and some days all you want is to be needed. Romance novels are less complicated.”
“Maybe you need to write something that’s not quite a romance novel,” I say. Like the arthritis romance novel I will never write.
“But there should still be sex,” she says.
“There can always be sex,” Gerald says.
“Many different flavors of sex,” says Lee.
Pam’s mom smiles. When she gets home she’ll be a grandma again, but perhaps mornings with Gerald will help her slip on some other shoes, even just in the pages of a notebook.
* * *
The problem with romance novels is that they’re usually about forbidden love, the Romeo and Juliet kind in which the lovers’ families are pissed at each other, or they can’t be together because one is rich and the other is poor. They’re still conventionally cute and sexy people who never get headaches or backaches or acne. They don’t worry about whether one of them wants kids and the other doesn’t, whether they like to do the same things in their free time, or who’ll do the dishes once they’re together.
Maybe they have dark secrets, like being an illegitimate child, or stealing food when they were poor, or getting a divorce that brought shame to their family, but they’re the kind of secrets that can be explained and dismissed so the pair can find a happy ending in less than five hundred pages.
They don’t harbor quiet worries that they can’t explain to each other. They know how to put all their fears into words.
* * *
I hate shopping for shoes, but Lee drags me along since she wants a pair of low heels and I need black flats. At the shoe store we’re helped by a saleswoman who purrs as she brings out box after box of footwear we didn’t ask to see. Sandals, go-go boots, platform shoes, clogs . . . How much does she expect us to buy? I don’t like the attention, but Lee smiles, lets the saleswoman slip each shoe on her foot before tottering across the floor, then asks for a different color or size. The saleswoman beams as she returns to the cavern of boxes in the rear of the store.
“I’ve never seen so many shoes in my size,” Lee whispers to me while the saleswoman is on her fourth trip. “They must outfit a women’s basketball team.”
It takes me five minutes to find the same black flats I always wear. They don’t kill my feet too bad after a day behind the teller window, and I buy them half a size too big so I can add insoles. While Lee continues being a foot model, I putter around looking at boots I’ll never buy.
Forty-five minutes later, we leave with two boxes. Lee chose a pair of low navy heels and nothing else, which leaves the saleswoman glowering. She amends her expression to a half-smile when Lee says we’ll return after our next paycheck.
By now I’m aching and not in the best mood.
“Did you have fun, Cinderella?” I say.
“Was that too long?” Lee stops swinging her bag.
“I could have gone to the cinema and watched the new Godfather move twice,” I say.
“I’m sorry, love,” Lee says in a low voice, “but now I don’t have to go to Chicago to feel comfortable being a woman and buying a damn pair of shoes.”
My impatience puddles at my feet. I should have thought of that. For years Lee could only dress as she wished in her apartment or on weekend trips. There’s too much I take for granted about her life, which leaves me blushing with embarrassment and shame.
“I’m sorry,” I say quietly. “I should have just sat down.”
“It’s okay,” says Lee. “Next time I’ll go shoe shopping alone like I used to in Chicago. I enjoy it too much.”
“I’m glad that you do,” I say. “Maybe I’ll come with you?”
“We’ll see,” Lee says, searching for the car keys in her purse.
In the passenger seat, I rub one hand over the other.
“Okay?” Lee glances at me.
I strain a smile. Joints again.
“The Tylenol is in my purse, love,” she says. “I didn’t hear a bottle shake in yours.”
* * *
After reading and rejecting Gerald’s work for five years, the editor of the little California press agrees to publish his fourth novel. This means a tiny advance on royalties, and a keg of beer at our next meeting of the artist collective.
Pam, Mike, and Amelia are there, and Pam’s mom brings a huge chocolate sheet cake. Pam gets to eat a piece while her mom holds Amelia. Lee and I help Naomi and Gerald with their cake. By the end of the day, forks can be hard for them to manage. It’s easy to establish a rhythm—a bite for Naomi, switch forks, a bite for me.
“Maybe I should go to California,” Gerald says. “They might have more horny people with disabilities.”
“There are horny people with disabilities everywhere,” says Naomi.
“I still want someone to write an arthritis romance novel,” I say. “One with a lot of hot baths, mint tea, heating pads, and watching movies on TV.”
“I’m in love,” says Naomi.
“It’ll be the most boring novel ever,” I say.
“I read mystery novels,” says Lee. “Exciting plots mean somebody died.”
“I’ll stick with the tea,” I say.
On the drive home, Lee rests her hand on my knee. It’s dangerous to hold hands in public, but it’s good to have another person I like to touch who likes touching me. Love is easier and more difficult than my high school self imagined, and involves sharing more pain relievers than passionate words. Teenage me would have been unimpressed with this idea, but maybe that’s why I’m just learning it now.