Soon to be a major motion picture directed by George C. Wolfe, produced by Denise Di Novi and starring Hilary Swank, Josh Duhamel and Emmy Rossum
Bec is adrift. It's the summer before her junior year in college. She's sleeping with a married professor, losing interest in her classes, and equivocating about her career. She takes a job caring for Kate, a thirty-six-year-old woman who has been immobilized by ALS.
As it turns out, before the disease Kate was a stylish and commanding woman, an advertising executive and an accomplished chef. Now, as she and Bec spend long days together, Bec begins to absorb Kate's sophistication and her sensuality, cooking for her, sharing her secrets, and gradually beginning to live her own life with a boldness informed by Kate's influence. The more intense her commitment to Kate, the further Bec strays from the complacency of her college life. And when Kate's marriage veers into dangerous territory, Bec will have to choose between the values of her old life and the allure of an entirely new one.
|Edition description:||First Edition|
|Product dimensions:||5.50(w) x 8.50(h) x 0.65(d)|
About the Author
Michelle Wildgen lives near New York City. Her writing appeared in Best American Food Writing 2004 and Best New American Voices 2004.
Read an Excerpt
I would begin on Thursday morning. The idea was for me to arrive early, by seven thirty, so Evan could show me what he did for his wife before he left for work, and afterward I'd follow him and Kate through a typical morning and afternoon. I had one day to observe and then training was over.
I began the morning by smacking the snooze button in a single well-aimed flail at six fifteen. I then lay immobile, arm outstretched and palm still .at against the warm grooves of the clock, enumerating my regrets over the switch from a night job to a morning one, until the alarm resumed.
After a pot of coffee, however, I began to change my mind. It turned out our living room windows faced east and sunlight flooded the room, something I had not had the opportunity to note in the nine months I had lived here. I settled myself before the television, coffee cup a pleasingly warm weight on my stomach, careful not to unbalance the couch (a green and gold yard-sale affair we had to treat gingerly, since Jill and I had hacked off one of the legs to get it in the front door, then propped it back on the splintered stump). I even opened a window to let in the breeze. You really could hear birds chirping in the morningthat wasn't just in folk songs. I sipped my coffee and listened to the anchors' chitchat. Things were happening in the world. For once I knew what some of them were.
By the time I arrived at the Norrises' house, I felt downright hale. My lungs, I thought, breathing deeply as I rang the bell, seemed to be of genuinely admirable capacity.
Evan opened the front door. "Bec," he said, smiling. "I guess this is the official welcome. Come on back to the bedroom." He was wearing dark pants, a neatly ironed white shirt.
I watched his hands swing as we walked to the back of the house, liking him. Something in Evan's gait seemed familiar, but then lately I had detected a bizarre habit of trying to associate every person I liked with Liam: If Jill made me laugh I listened to the tone of her voice to see if it was like Liam's when he told a story; if a guy on the street gave me a certain kind of smile I searched his face for Liam's thick eyebrows or his straight white teeth.
In the bedroom Kate was in her wheelchair, already dressed in a khaki skirt and blue T-shirt. Her damp hair left dark patches on the shoulders of her top. Her face was pale and bare, her eyes soft. Without makeup she seemed soft-fleshed, vulnerable as an open mollusk. When she spoke to me, her voice was low, the words slurred and indistinct though it was clear she was trying to enunciate. Evan translated after each phrase, switching pronouns and glancing back and forth between us.
"So we let Evan . . . do everything today . . . and you watch, okay? Sometime I'll have you dress me . . . just so you know how, but . . . we can do that later."
When this last part was repeated, Kate gave me a sheepish smile. I said, "Oh, don't worry. I'll learn soon enough, right?" Maybe at the beginning she always gave herself a little grace period before she showed a total stranger everything. Frankly, I was grateful for the wait. I might not stay at this job beyond the summer. Perhaps I would never have to deal with dressing, period.
But I was resolved to put in the three months till September. Look at Jillback in high school she'd stuck it out, for no money, volunteering at an ugly nursing home for almost a year. By contrast, I'd found a pretty easy deal (I allowed myself a moment of superiority), and presumably I had a bit more fortitude at twenty-one than Jill had had at seventeen.
"So," said Evan, clasping his hands, "let's get to it."
The three of us went into the bathroom, which was palatial. There was room for three chairs, Kate and Evan facing each other next to the counter and me standing perpendicular to them, opposite the mirror. On the counter was a neatly divided compartment case of makeup and a few pricey hair products lined up near the sink: bottles of creams and mousse and a vial of something syrupy and clear.
Evan held up a bottle and said, "First you take a little of this and rub it on your hands and put it through her hair."
She let her head tip back as he combed his fingers through her hair, which looked silky and heavy, and rubbed his palms over the crown of her skull. The cream smelled of limes and coconut. That was just fine. I knew how to do that. He combed her hair back from her face, parting it to one side. I made a mental note that it was the left side. Her skin was pale, flushed through the cheeks and dusted with freckles I hadn't noticed the day before. Her eyes, a light, clear tortoiseshell amber, bore a burst of gold around the pupils. It was not a girlish face, but built of firm lines instead, her eyebrows slanted rather than blandly curving, her nose long and straight, the tip slightly angled toward her lips, her mouth wide but not especially full. It was the face maybe not of a model but of a tall woman, its scale too bold to be comfortable on a petite frame. How tall had she been? Five eight, five nine? Not just the chair but her thinness made it difficult to guess. The proportions were off.
When he finished she said through Evan, "How are you with makeup?"
My hand darted up to my face. Then I knew I should have put on a little, out of deference to the job. I hated makeupmy eyelashes felt stiff when I wore mascara, and I always forgot powder. I never understood how Jill could go out on a hot summer morning with her eyes smoky and dark and her mouth covered in a coat of burgundy lipstick. Yesterday at the interview Kate hadn't seemed to be wearing much, but now I guessed it was the kind of expertly blended makeup that only looks like nothing.
"I can learn," I hedged.
"Evan learned," Kate said.
"Oh, then no problem," I said. I took out some mints and offered the tin around. It was as though we were just girls hanging out. Except for the husband it felt like junior high. Of course, if I had paid better attention in junior high makeup sessions I might have known what I was doing by now. "This is going to be good for me," I said, through a mouthful of mints. "My roommate's been bugging me to wear some mascara since we were thirteen."
Kate smiled as she lifted her face to Evan. He dotted her skin with foundation and smoothed the makeup out, covering the freckles across the bridge of her nose, which I thought was too bad. Then he dusted her cheeks with blush and held up two compacts of eye shadow. She looked them over for a moment and then nodded at one, saying in that low voice something that sounded like "just a little." Evan went to work like a pro, whisking taupe shadow over her closed eyelids and feathering a stiff brush, tipped with brown powder, against the grain of her eyebrows and then brushing them back into place.
It was a brisk, impressive procedure, and as I watched I wondered if I would ever go through anything like it myself if I were her. She didn't have to go out every day, yet she did her hair and put on a full face of makeup? It seemed silly, so precious, to go through all these motions for nothing. But perhaps she simply liked to feel polished.
Evan lifted her face with a knuckle beneath her chin and caught her eyelashes in a curler. "If I ever get sick of the marketing game I'm going to go pro as a makeup artist," he said, then wiped extra mascara off a wand and started brushing it up and down Kate's lashes.
"I'd pay you," I said. He laughed and held up a couple of lipsticks. Kate nodded at one in his right hand. As he finished with her lips, the two of us looked her over. It was the same face I'd seen yesterday, her but intensified, her eyes darkened slightly and her mouth rosy. Now that I'd seen him do it, makeup didn't seem so mysterious.
Evan leaned down and used the tip of his thumb to brush away a bit of powder, his face intent. He smiled at her. Maybe the makeup was for him.
Finished, they turned to look at me. I glimpsed us all in the mirror, the backs of their tawny heads gleaming in the reflection as they faced me, and between them the pale oval of my face. After looking at Kate, whose coloring was faintly golden, my own skin seemed whiter, my nose a formless little button and my cheeks more rounded than I'd ever noticed, my naked eyes a wolfish gray.
"Think you can do this tomorrow?" she said.
"Sure," I told her. I considered practicing on Jill tonight but decided I wouldn't need to. Tomorrow I would just remember that all I had to do was enhance what was there and I'd be fine.
Their ad had caught my eye because it was so calm, free of suspicious overenthusiasm and exclamation points. Very few jobs deserved that kind of punctuation, and I appreciated an employer who recognized that. They were seeking a helper for the wife, who had Lou Gehrig's disease. When I phoned, I was imagining reading books to her, serving tea that smelled of something crisp and bracing, like mint. Even after Evan said Kate was only thirty-six, I persisted in imagining someone tremulous and elderly, someone you take one look at and know she needs your helpyour humor, your height, your muscled arms.
I may have been inventing everything else, but I knew the most important thing: The salary was fifteen dollars an hour, assuming I turned out to be a caregiving sort of person and got the job. I had no idea if I was this sort of person or notit's my belief that sometimes you just let the experts decide. They weren't even looking for a nurse, or a true home health care worker. Helping out, Evan said on the phone. Driving her around, making phone calls, lending a hand around the house. How hard could it be?
He hadn't seemed overly concerned with my lack of prior experience, which was a plus. I was so unfamiliar with the details of the disease that I wasn't even certain who Lou Gehrig wasa baseball player, I eventually recalled, and I pictured a woman slowly transformed into a thick mannish figure, growing daily more meaty and sad, until I realized I was thinking of Babe Ruth.
Instead I found a slim woman with dark gold hair that fell past her shoulders and bright amber eyes. When I arrived for the interview the French doors had swung open of their own accord as soon as I rang the bell, revealing a woman in a wheelchair, her hands folded in her lap, and a man standing behind her. His hand was resting on her shoulder. The two of them were positioned a few feet back from the front doors. They were the very first thing I saw when I entered the house.
She smiled at me. Between her shining hair and her dangling gold earrings, she looked even younger than I had expected. Her prettiness and her berry-red dress were a relief and a surprise to me, so much so that I had to admit I must have been steeling myself for this moment. Even as I was pleased to see what she looked like, I was ashamed to think how I might have responded if she had been homely and lumpy, in a pilled but comfortable polyester jumpsuit. I'd been picturing an older couple, a smaller house.
Kate mouthed hello. She shifted her knee slightly to one side, so that it pressed something, a switch or a button of some kind, on the chair. The big French doors swung shut behind me.
"Hi there," I said. I nodded to both of them. I wanted to address Kate, even though it was tempting to go toward Evan, since I had already talked to him. He'd turned out to be tall, maybe a bit gangly, with thinning blond hair and a handsome, lean face, long-nosed and etched with lines around the lips and eyes. He wore round wire glasses and rubbed at the back of his neck in the manner of someone who recently cut his hair shorter than he'd meant to.
"Becky, right?" Evan said. There was something bookish and friendly about him.
"Everyone just calls me Bec, actually," I said. "Don't ask me why."
I took a step toward them, wondering how to greet her. The movement of her leg had thrown me off. Evan had told me she was almost totally paralyzed, but clearly she could do some things, so I held out my hand for her to shake. Her glance alighted on my outstretched hand and then on her own hands, thin and attenuated with oval unpolished nails. The hands lay in her lap, motionless. She gave me a little shrug and a smile. Suddenly I was sure I'd made a terrible decision coming herewhat did I know about this job besides the money they offered? I hadn't thought this through at all.
"I'm kind of an idiot," I said.
She spoke, glancing toward Evan and grinning, and I took another step forward, straining to hear her. Had he mentioned this part, that I would not understand a word this woman said? Unsure if I was supposed to be answering, I watched Evan watch her and then say to me, smiling rather kindly, quoting his wife, "The important thing is that you feel at home enough to say so."
Evan set Kate's hand on the armrest, her fingers placed over the wheelchair buttons, and they led me through the living room toward the kitchen. The living room was cool and pearl gray, the sort of place that looks as if no one ever sits down. On a table by the wall near the kitchen door was a statue of a girl, and as we walked past itEvan first, then me, then Kate, the chair's gears whirring softlyI slowed to look at it. One arm hung at her side and the other curled over her head. Her stomach muscles were molded clearly, and so was the muscle at the top of one thigh as she stepped forward. The breasts curved out from her rib cage and came to a smooth undifferentiated point at the tips. Someone had hung a spider plant too close to her, so she had a mermaidish mop of green hair.
Kate saw me looking at the statue and rolled her eyes. With a tolerant smile, she tipped her head toward the kitchen, where Evan was waiting for us. I took it to mean the statue was his taste and not hers.
In the kitchen she stopped her chair at the table and Evan gestured for me to sit down as well. He stood, leaning against a butcher-block island in the center of the room. Behind him half a dozen battered copper pans hung from hooks in the ceiling. A row of cookbooks slanted against the refrigerator. If I'd had a kitchen this beautiful, I thought, I'd know how to cook by now. As it was, I mostly microwaved butter and poured it on things.
Sitting across from Kate gave me a chance to get a better look at her. The back of her head was cradled in the padded half-moon attached to the back of the wheelchair. When she brought her head forward, to swallow or take a breath, it fell a little too far, so that I could see her pale side part. She had the kind of hair, straight and heavy, that I'd always coveted. I was very aware that my own hair was a dark frizz around my face and stuck to the back of my neck. I set my forearms on the table and realized my button-down shirt had a tiny stain on the cuff. I felt incredibly out of place: fuzzy, damp, badly dressed. You think you're showing up to help people out, but there they were, cool and sleek and regarding me with an air of friendly curiosity, as though I were a Girl Scout or a Mormon.
If I got through this without embarrassing myself, I decided, I'd go home and call Liam. Let that be my little carrot to draw me through. I hadn't seen him in days, which was typical, if unpleasant. Sometimes I wandered aimlessly around his part of campus just to glimpse him, though we were smart enough not to be seen strolling the lawns together. When he did see me, sitting in the Rathskeller on rainy days, a book and beer on the table before me, or when we passed one another trudging up the steep sidewalk of Bascom Hill, we nodded and smiled pleasantly, leaving our sunglasses on. Sometimes we stopped and spokeno lingering, no idle touchesjust long enough to plan a meeting at my house.
I made an effort to apply myself and listen as Kate started to talk about what she needed. Her voice was soft, the sound coming from low in her throat. I had to watch her mouth carefully. Kate would speak, and then pause, and then Evan repeated what she'd said. Evan seemed to understand her, though sometimes he had to double-check a word or two.
She was almost impossible for me to comprehend without his translation. I was becoming very worried. Would he be here all the time? Because I didn't see how I would ever understand her. I darted back and forth between looking at her and then at him. It seemed very important to pay attention to Kate, even when Evan was the one speaking. After all, I reasoned, they were her words. So I watched Kate as Evan said he would generally get Kate up and dressed, and usually help her to bed as well. Without seeming to realize it, Evan sometimes referred to himself in the third person when he quoted her.
She had pockets of movement left, he explainedshe could muster some strength in her legs, enough to press a button on her motorized wheelchair with one side of her knee to open and close the front door, or to kick if she were in a swimming pool. Her fingers were strong enough to manipulate a remote control or a simple switch if it was placed beneath her hand. She could hold her head up and turn her neck, but when the muscles grew tired she often let the back of her skull rest in the padded cushion on her chair.
"We're not talking about something excessively clinical," Evan had said. "Obviously you're not monitoring her heart rate or giving her injections or something. More the general business of keeping her mobile and communicative. But I don't want to misrepresent itshe does need help bathing, for example, and using the bathroom, and as long as you're here we'd expect that to be part of it." Evan paused and looked toward his wife. "So if you're really uncomfortable with that, say so now."
"I don't think I am," I said. "But I don't know for sure till I try."
"That's honest," he said approvingly. "I take it you haven't done anything like this before? Or maybe you knew someone who did?"
"Not me, no. My roommate's grandmother needed a caregiver for a while before she died, but I think her mom did most of that."
"Uh-huh," he said, sounding as though he was waiting for more.
"I guess it made an impression on me," I said. Had it? I remembered it still, years later, so perhaps it had. Certainly it had made an impression on Jill, who was very vocal about her plans to die in some strategically timed manner. "How much they could have used some help."
In fact, there had been a home health care nurse who was supposed to be doing the heavy lifting, as it were, but Jill's grandmother had insisted her mother and Jill help her instead. "But no, I personally don't have a lot of experience." I paused. "May I ask why you aren't going through an agency?"
Kate spoke first. Then Evan nodded and said, "We have before. They're fine, but they seem to deal with Kate as sort of a generalized patient instead of as an individual." He cleared his throat. "They were never that willing to do things her way instead of what they'd always done. So we train each person ourselves. Fewer channels for things to get lost in.
"We've been using friends of friends, and now, of course, an ad, just to see who turns up," Evan was saying. "We had two, Hillary and Anna, but Anna left for graduate school in New Haven. So Kate wants to choose her own and make sure it's someone she has fun with."
"Well," I said to Kate, "that makes sense."
It was awkward, staring at this person who simply looked back at me. I nodded a lot. Sometimes she gave me a quick, understanding smile, the lines around her eyes deepening for a moment, and other times she only sat quietly and let me watch her. She was so small: her neck only a stem, her shoulders narrow and bony beneath the fabric of her dress. I tried to picture Evan dressing her. It must be such a delicate operation. On her wrists a prominent knob of bone bore outward, pressing white against the skin. If someone wasn't careful they'd bruise her against the hard metal of the wheelchair, or the walls of their widened doorways.
"I think I mentioned references on the phone, right?" Evan said, startling me out of my thoughts.
References? He hadn't mentioned references. I didn't think so, anyway, and in the absence of a job application asking for them, I hadn't even thought about it. The setup had seemed so casual on the phone.
"I'm sure you did," I lied. "I can write them down for you now, if you want." He handed me a notebook and pen that had been sitting on the table. I stared hard at the empty paper, then wrote down my boss at the steak house where I waitressed, as well as my boss from last summer, when I'd worked at a temp agency. Maybe I should have written down a professor or someone who could attest to my intellect, but I didn't know my professors very well. Liam was faculty, but I hadn't exactly taken a class with himhe'd taught Jill's class.
I pushed the notebook back toward Evan, who set it aside without looking at it. Maybe it was just a formality. Nothey were looking for someone to come in and have the run of their house and be responsible for Kate. They'd call, and my steak house boss would know I was looking. I'd just have to tell her I needed daytime work. Which I did my parents paid my tuition, but I had next year's living expenses to think about.
References dispatched, we returned to discussing what they needed.
As we got up to tour the rest of the house, I wondered how much of this they'd done before. Evan hadn't said how long she had been ill, but they seemed comfortable enough, their explanations practiced enough, that I thought it must have been some time. Five years, ten years? I was struck by the feelingboth pleasing and ominousthat they were wooing me a little, showing me how normal and easy it all was.
They led me down the hall, gesturing as we passed the den, the family room, the dining room, the sunroom. That cool living room at the front seemed strange now that I had seen the rest of the house, which was comfortable and bright. The kitchen walls were the color of buttercups, and in the other rooms there were vases of tulips and bowls of pears, big comfy chairs and end tables piled with books. As they showed me around I took in the miscellaneous details of a stranger's home: an old-fashioned shaving brush in the bathroom, a pair of dumbbells on a chair in the den. After ten minutes I knew more of their home than Liam's, though I had been seeing him for almost five months. I knew he lived in a small yellow house walking distance from campus, in a neighborhood known as a good place for big dogs and small children. Once I had made Jill drive me past the house late at night, but I had definitely never been inside. Were there bowls of fruit on the tables and vacuum tracks on the rugs? Or was it messier, with half-empty coffee cups in the living room, damp panty hose draped over the towel rack?
"I love your house," I called out, from behind them. Kate turned her head as far as she could toward me. I saw her lips move and decided she was saying thank you.
"You're welcome," I hazarded.
"Kate should have been a decorator," Evan said, as we turned left at the end of the hall. "She chose almost everything here. I helped on a couple rooms, too, but mainly it's all her."
It made sense: Her clothes were a similar palette of bright colors. Only her black wheelchair seemed out of place. I wondered if they made wheelchairs in other colors or out of other metals. She would have looked very nice in copper.
"What were you?" I asked gracelessly. The past tense sounded worse than I'd meant it to, but Kate either didn't notice or chose to ignore it. She answered, glancing at me and then at Evan, who said, "She was in advertising, too. That's how we met."
"Really?" I said. "That's my major. When I talked to you yesterday I was on my way to my final in 'Stoking Desire: Consumer Trends 341.' "
Kate smiled. "Is that what they call it these days?" Evan said, sounding faintly appalled. "We should talk about that too, maybe. What are you hoping to do after college?"
I froze. I had only mentioned it to establish a little rapport. Quite frankly I thought I'd gotten a C on the final. My choice of major was mainly borne of panic and an unproven suspicion that I might have a flair for writing catchy slogans. If pressed, I would be forced to admit I found the whole thing rather shady and manipulative. Yet these two seemed fairly straightforward, and suddenly I was unwilling to make up something interview-y.
"I honestly don't know," I said.
Kate nodded, her eyes closing briefly as if in emphatic agreement with something I had said. She spoke, and Evan watched her and then repeated: "We both totally fell into it. My major was literature and Kate's was business."
We were at the bedroom by then. They had a bed in the center of the room. Just a regular king size with a blue spread and a few extra pillows, flanked by nightstands but no railings or machinery that I could see. When I turned toward them, they were both watching me stare at their bed. Our eyes met for a moment, and then Evan began opening closets to show me how her clothes were organized, pointing out the remotes to the television, the lights, the fan. Next to what I guessed was her side of the bed was a nightstand, on which sat a small box with a lit green button. An electric cord ran from the box behind the table. He picked it up and showed it to me.
"I go out of town sometimes, and when I do we leave the lifeline under Kate's finger at night. If she has any emergency she presses it and that calls the fire department, the police, the ambulance, and a caregiver."
I pictured Kate surrounded by a swarm of dark uniforms, red lights flashing in the windows. "Wow," I said lamely. "Have you ever had to use it?"
Evan set it back down. Kate shook her head. "Not yet," she said, Evan translating. "We just got it in the past few months."
Kate said something else, but instead of repeating it right away, Evan looked back at her and shook his head. She raised her eyebrows at him. He sighed. Turning back to me, he said, "She wants me to tell youassuming this all works out, of coursethat if you're ever here and there's a problem, not to call nine-one-one or press the button without her permission. You should know that going in."
I thought maybe it was a joke, except that Evan seemed serious, even vexed. His brows were knit, and he crossed and hurriedly uncrossed his arms as he spoke.
"What if it's an emergency?" I asked. "What if there's no time?"
Kate spoke, looking at me and then more intently at Evan. He fiddled with the window latch as he said: "Kate feels very strongly about this. Once she goes into a hospital, say, if she were put on a respirator, it might be hard to get her off it." He stood up and put the button back on the table.
"I don't understand why you'd want to," I said, baffled. Was this some Byzantine role-playing game designed to ferret out the nutjobs? Surely anyone would press the button without asking. It seemed as if it would be a black mark if I said I might try to help her, but what did this woman want if not help?
"I wouldn't. We wouldn't."
Kate spoke again, more loudly this time, lifting her chin to project as well as she could. She watched him closely as he translated. "People can end up stuck on a respirator, in an institution, with no options. I know it seems odd, but it's important." He turned to me, his back to Kate, and said, in a much lighter, faster tone, "God, this is a heavy-duty way to kick off an interview. Really, Bec, don't worry. It's the kind of thing you need to have on the table and then forget about. It'll probably never come up. If it does, she just needs to sign off on it is all."
I looked to Kate to follow up on this, but she said nothing this time. Her lips were taut. She didn't seem to like something about what he'd said, but I didn't know what. She felt me looking at her and let her expression relax.
"Sure," I agreed. I paused, then decided to be honest. "I think it might be tough to remember that in an emergency, but I'd do my best." That was straightforward. I was feeling almost reckless now. I could be perfectly honest, I could be myself, because I could see now that I ran almost no risk of getting the job. They wanted someone with cooking skills, makeup skills, actual life skills, not just the ability to trounce one's best friend in handstand contests.
"I bet that way you don't risk creating an emergency if there isn't one," I suggested. They looked at each other but nodded. "I didn't even know they had anything like this," I said conversationally, tapping the cord. "Did it just come out?"
Kate said something with a tilt of her head, her eyes cast briefly heavenward. Evan repeated: "A few years back. But she was fine without it up till a couple months ago."
"Lou Gehrig's moves that fast?" I asked. So maybe even in January, for example, she had been moving well enough to reach a phone, speaking clearly enough to be understood? Looking at her now, her body carefully held in place in her chair, it seemed impossibly recent.
I thought someone in Kate's condition would have become immobilized through either one quick trauma or else years and years of slow deterioration, the sort that gave you time to prepare for each new loss. A year ago, she was probably in a wheelchair but didn't need Evan to translate. Maybe not long before that she only used a walker.
Kate spoke, and Evan waited and then said, "It depends on the person. Some people are fine for years. Kate's has moved faster than we'd like. We'd hoped she would just have tremors, or maybe use a walker for a few years, but she needed the chair after a few months. Lately she's been losing a bit more ground."
"I see," I said. I liked that measured way of talking about it, as though it were a burned cake or a vacation over too soon. Their calm seemed brave. I tried to imagine Kate walking into a doctor's office in a dress and sandalsno, a suit, high heelsnodding at the receptionist, sitting in a straight-backed orange chair with her purse in her lap while a doctor held up brightly colored charts.
I stood there, fingering the embroidered edge of a pillowcase. They were bright people, literally so: their blond hair and the vivid colors in their clothes, the light shining on their picture frames and paintings. I found them admirable, maybe for no other reason than that they had said nothing overtly angry or weepy.
"Well," I said. Suddenly we were all smiling shiny interview smiles again. Kate nodded at Evan and he said, "Thank you for coming, Bec. We have a few more people to meet to see who's the best fit with us, but we'll be in touch."
"Sounds good," I said heartily. "Of course." I shook Evan's proffered hand. Looking for a way to do something similar with Kate, I let my hand hover a foot above her shoulder, then thought better of it and lifted it into a wave. "Thanks. Thank you." I started to leave but then turned back and said, "Listen, can you recommend a book on this for me? On the disease? Either way, I might want to read up a little."
Kate's expression sharpened, her eyes focusing more tightly on me, and a faint smile touched the corners of her mouth. She wheeled the chair over to the bookcase, indicating with her head for me to follow, and nodded at one shelf.
"The one at the end, I assume?" Evan asked her. "Living with ALS?" She nodded, and Evan reached past us and tapped the spine of a thick blue book. I didn't know if they meant for me to borrow it or only to note the author, so I studied the spine intently, repeating the title. "I'll put a hold on it at the library," I said. I was embarrassed to have
asked. I'd been sincere but now seemed disingenuous. "Thanks again."
I walked out to my car, still thinking about the notion of fit. It was a nicety of interviewing I never failed to appreciate. It comforted me to think that any job I wasn't offered was not because I was totally unqualified but simply due to a vague notion of attraction. Fit, that's what it was: fit, not failure, like a date you kiss good-bye without feeling a thing, except an unfocused sense of goodwill and the knowledge that you won't ever see each other again.
Makeup applied and hair dressed, Kate led the way into the kitchen. She pulled up next to the table but not facing it while Evan poured himself a cup of coffee. He held up another mug to me.
"Thanks," I said.
"Milk's in the fridge," he said, nudging a sugar bowl toward me. I found the milk, sloshed a bit in, and dropped a spoonful of sugar into my mug.
Evan opened a pantry door and gestured to me to follow, which I did, sipping contentedly at my coffee. It was a big walk-in, stocked with blue and yellow tin gallons of French olive oil, jars of tomatoes and peaches and pears. Beneath that was a neat shelf of bottles. They had spices I knew but had rarely seen people really use: jars filled with piles of crimson threads of saffron or bright gold powdered turmeric; tiny reddish pellets that looked like the centers of flowers; little curls of cinnamon like stubby brown cigarettes; something I first thought was a jar of almonds but that turned out to be whole nutmeg.
"This is really something," I said. I looked over my shoulder at Kate, who was sitting just outside the pantry door. "Did you cook?"
She nodded and said something. " 'I used to love to cook,' " Evan's voice translated near my ear, startling me. I'd forgotten he was in the pantry too.
I touched a plastic bag filled with desiccated burgundy peppers, like long, shriveled hearts. "What did you like to make?"
She tipped her head, with a look on her face that was half-wistful and half-proud. "All kinds of stuff."
I turned back to the pantry, eyeing a jar stacked with coins of sliced cucumbers and starbursts of some green herb and wondering who had put these up last summer. Could it have been Kate? Evan was still standing where he'd been when he first motioned for me to come over to the pantry: next to a whole wall stacked with the same brown boxes on each shelf. He reached into one of the open boxes and held up a can a little smaller than a soda. A nutrition shake. He handed it to me and then grabbed another.
"Breakfast," he said.
He took a white plastic funnel and a long clear tube from where they were sitting by the sink and held them up for me to see. "I'm going to do this today, but tomorrow I'll let you do it." He and Kate exchanged a look. "Unless you want to do it now."
"You'd let me do this before makeup?" I asked, eyeing the tube. Where exactly was that supposed to go?
Kate said something and Evan translated: " 'Well, the makeup. That's important. This is just sticking a tube into my digestive tract.' "
I laughed, but I had no intention of getting ahead of myself on the first day of training. If they offered me the option, I was watching.
Evan showed me how to attach the tube and funnel to each other.
"If you lift her shirt on the right side, you'll see a little valve." He did this, gesturing with the funnel for me to come closer. I went to the other side of her chair and bent at the waist, bracing myself on her wheelchair. I saw Kate give my hand on her armrest the briefest of glances. I took my hand off of it, bracing myself against my knees.
But I didn't see anything, just her pale skin, the faint marks from her waistband, and a freckle on her rib.
"You may have to lower her waistband a little," Evan said. He pushed her waistband down.
"Is that it?" I asked her, glancing up. I was so close to her I could smell the faint powdered fragrance of the makeup on her cheeks. When she nodded and said yes I smelled the toothpaste in her mouth, a mix of mint and something like clove. Next to me Evan was warm and very close. I could smell the clean, laundry scent of his clothes.
He pointed at a round white plastic ring inside her skin, with a plug in the center, attached at one side by a tiny plastic arm. Evan glanced at me and said, "That's the valve. We call it the button a lot, I don't know why. So now I go ahead and open it."
Kate said something and I leaned back a little to watch her lips move. Her bottom teeth overlapped slightly. "Don't be nervous because of the valve," she said. "It freaks out everyone."
This was a reliefI could hardly take my eyes off it. The valve was embedded in Kate's flesh, a few inches above her navel, and the plug that closed it was the kind that holds air inside water wings. Evan took the plug by the little nubby tab and opened it gently.
"It'sshe'slined with plastic. It doesn't hurt. Now I need to insert the tube into the valve." He steadied one hand against Kate's belly and eased the tube in with the other. She sat silent and composed, and I tried to be as still as she was. Evan stopped inserting the tube. "You'll feel a little click when it's in right," he said.
"Now you give the can a good shake and then just pour it into the funnel." He did both and then straightened up.
This posture was hurting my back, so I stood up too, accidentally brushing against him. Evan moved a step away without saying anything, holding the full funnel in the air like a cocktail glass.
"The first few days are the hard part," Kate, and then he, said. "Once you actually start the hands-on stuff. But after a few days you get familiar."
"It doesn't seem so terrible," I said. Even to myself I sounded relieved. "It seems kind of straightforward, actually."
They exchanged a glance, and Evan went on, in the faster, more relaxed tone that I now realized meant he was speaking for himself and not Kate: "You can always give me a call at work if you need anything." He glanced at Kate. I wondered if they said this to everyone, or if they sensed that I would really need it. I didn't think I would. So far it seemed easy enough: You put makeup on; you .t a simple if weirdly intimate apparatus together. Really, except for the feeding tube, I wouldn't do much for her that I couldn't do for myself.
"Or you can call Hillary, who's the other caregiver, or one of Kate's other friends. A lot of them are old caregivers." He smiled at no one in particular. "No one wants to lose touch with her."
Kate grinned at me and said something, glancing at Evan and then back at me. I smiled uncertainly. Evan laughed and said, " 'They come to worship me.' "
"Something about the wound in my side," added Kate. For a moment I gazed, smiling uncomprehendingly, at her lips even after they had stopped moving. Then Evan repeated it, and I laughed. I laughed more loudly than it warranted, because I caught Kate's pleased expression when she saw the joke was still funny secondhand, and because I knew she was making an effort for me.
It was really very difficult getting to know someone like this. The more Evan translated, the more he spoke to me about what he was doing, the more I felt as though he and I were in conversation and Kate was off in the background. I made the effort to make eye contact with her and keep my attention on her, but really I wanted to focus on Evan. It was so much easier. And though I wouldn't have thought a woman who could do so little for herself would need humanizing, I realized I had been reading her relative silence as aloofness. I turned slightly away from Evan now, focusing my attention on her.
After that the day continued a lot like any other first day on the job: them showing me things and me nodding and realizing I should have brought something to write on. But I figured it would come back to me as I needed it.
I'd been wondering how Kate spent her days. It turned out the pile of books I'd seen by the table was hers, and on her computer there was a list of folders on ALS research and fund-raising. Evan had his own computer in another room, and this one was set up for Kate, with a small round silver sensor we could stick to her forehead. She moved her head and the sensor somehow clicked what she wanted on the screen the same way a mouse would.
"Do you do a lot of fund-raising?" I asked. She nodded and left it at that. I didn't need to ask how she'd become interested and I guessed I would be making a lot of phone calls on her behalf. I hated that sort of thing.
"A lot of times we have people over, and if Evan can't get home I might ask you to help me get ready," she said, pausing to let Evan repeat. "Do you have any interest in cooking? There's caterers and Evan too, if you don't, of course."
Why not? If someone was teaching me it might be fun. Maybe someday I'd even give a dinner party, for which I'd be flawlessly made-up. This job was going to be great for me. "I'll definitely give it a shot if we start very slowly," I said. There was a pause. "Like, salad-slow," I added. She was probably the sort who thought fresh pasta was simple too.
They were showing me around the office, which was largely devoted to filing cabinets filled with medical insurance and records, when Kate said, "I'd like to use the bathroom."
"Okay," Evan said. He nodded at me to let me know I should follow, and the three of us made our way in a single-file line.
Back in the bathroom I perched voyeuristically on the edge of the counter, as Kate stopped the wheelchair next to the toilet. Evan took her by the arms and drew her to her feet. "If you work quickly," he said, "she can stand. Not for very long, but long enough." Her head fell forward but she was upright, her arms still draped over Evan's shoulders, her knees locked and legs trembling slightly. My hand reached out involuntarily toward her.
Evan was fasthe lifted her skirt to her waist and pulled her pink bikinis to her knees in practically one motion, then gripped her beneath her arms and lowered her slowly to the toilet seat. I looked all over the place as he did this, not sure where it was best to be staring: Her face, as though I were waiting for her to show embarrassment? Her pelvis, where all of Evan's motion was, motions that I guessed I should be learning? I had a glimpse of a light brown triangle of pubic hair, the little mouth of the valve above a sharp hip bone. I'd seen a few photos around the house of her when she was healthier, and she'd been average-thin before, but now her pelvis was an empty bowl, her thighs almost straight lines from hip to knee.
The three of us, Evan and me standing with our hands in our pockets, Kate sitting, had a moment of awkward silence. I could hear the sound of urine trickling beneath her.
"You have to be ready to grab her if she can't stand," Evan said, breaking the stillness. I nodded. "She'll tell you, and if that's the case, then forget about what you're doing, her pants or whatever, and just grab her and help her sit and then you can go from there."
"Okay," I said. The bathroom floor was cold black-and-white tile.
"Be very careful never to drop her," Evan said.
"I won't." I thought I would be okay. You pulled her up, held her, set her down. It was doable.
Kate nodded at Evan as the sound of trickling stopped. As he lifted her, grabbing a tuft of toilet paper first, she told me, "Just hold on to me with one hand the whole time I'm standing. Under my arm." Evan repeated what she said as he wiped between her legs and dropped the tissue into the toilet. He pulled her underwear back up and tugged down her skirt so he could pivot her back to the chair again. Then he flushed the toilet and I stepped out of his way so he could wash his hands.
When he was done, I turned on the tap and wet my hands, squirting some soap into my palm and lathering up. I was scrubbing away unthinkingly at my wrists when I glanced up and realized Evan was toweling his hands a little more slowly than one normally does, and I glanced down at my wet hands and then at my face, now beet-red, in the mirror.
"I don't know why I just did that," I said. Kate had moved to just outside the door, in the hall. She said something. I watched her mouth and caught the word "weird."
Evan hung up the towel and repeated, "This is weird, but mostly for you. I'm accustomed to it."
I wiped my hands on my jeans, my cheeks still hot. "I was feeling pretty relaxed till now. Probably makes you wish you had some old hand of a caregiver from an agency."
Kate shrugged. She was very eloquent with her shrugs. This one consisted of one shoulder lifted toward her ear, her head tilting just a little, an eyebrow raised. She had a mischievous grin. "You learn to make your own fun," she said.
At three the other caregiver, Hillary, arrived. She was a tall, sturdy, blond nursing student with tiny octagonal glasses and a Teutonic briskness next to which I felt the urge to be rather frantic and talkative, my jokes sounding as though they ought to be punctuated with a clown horn. Nurses didn't wear those little folded white hats anymore, but Hillary carried herself as though one sat upon her head at all times, crisp as a starched linen napkin.
"How was your first day?" she asked me seriously. She wore her hair in a short, feathery cut, her downy earlobes unpierced and her body covered in a shapeless dun-colored T-shirt. We were all in the living room. Evan was seated on the arm of the couch. Kate was pulled up next to him, his hand on her shoulder.
"It was great," I said. I looked at Kate and Evan, who nodded briefly and in unison, their expressions unchanged. Were those diplomatic nods? "I watched today," I went on. "But Evan did a fine job."
Evan and Hillary laughed, but Kate just smiled briefly. She said something, her expression serious. Evan asked her to repeat it, then nodded and turned to me.
"Tomorrow you'll get hands-on experience," Evan said. "We try to make the first day kind of easy, but the second day we start to throw you in." He looked apologetic.
Hillary nodded. "They tried going really slow for one girl." She glanced at Kate for approval. Kate nodded. "But after a month she still didn't get some pretty basic stuff. So I got the boot camp, and so do you."
I laughed. "Oh, I doubt it's really boot camp. I'm ready to get started."
Hillary smiled skeptically. "Great," she said. She hung her bag over a chair and then looked to Kate. "Well."
It was my cue to go. I said good-bye and jogged out to my car.
Copyright © 2006 by Michelle Wildgen
Reading Group Guide
About this Guide
The following author biography and list of questions about You're Not You are intended as resources to aid individual readers and book groups who would like to learn more about the author and this book. We hope that this guide will provide you a starting place for discussion, and suggest a variety of perspectives from which you might approach You're Not You.
1. On page 117, after Bec has added her own words to a conversation when she's supposed to be speaking only for Kate, Kate says to her, "This is me … You're Not You right now." Why was this line chosen as the title? Why do you think Bec speaks up in this scene? How does Bec handle the dilemma in this novel of taking care of others versus taking care of herself?
2. On page 90, Bec, Kate and Evan are talking about religion. Bec says she was raised skeptical, whereas Kate says her family still calls her when they're having prayer services for her, and asks if she wants to come. Do you think that religious upbringing played a role in how the two women ultimately came to think about illness and death, and the decisions they make in the story? Did your own religious background, or lack thereof, influence your experience of Kate's death in the novel?
3. Much of the early bonding between Kate and Bec takes place over cooking and shopping and appreciating beautiful things. What role do class and economic status play in the novel? Would the story have turned out differently if Kate had been less well-off? Would the two women still have become close if Kate hadn't been so comfortable financially?
4. "Sometimes I looked at my face … and thought I was genuinely pretty. But for some reason I never did much to heighten or shape itI found it preferable to believe I had a certain amount of raw material, if only I attended to it someday" (page 55). What does it say about Bec's state of mind early in the story that she thinks about herself this way? By the end of the novel, she's wearing makeup occasionally. What do you think is the significance of this change? Is it a change for the better? How does it relate to Bec's experiences with Kate?
5. Do you think Bec's perception of Kate and Evan's breakup affects her own relationship with Liam? Do you see any similarities between the two relationships?
6. Do you think Kate's reaction to Evan's affair with Cynthia is severe enough? Too severe? On page 119, Bec tells Jill, "I was picturing sort of a series of mature, world-weary one-nighters with divorcées … All very-up front. And I thought that was kind of okay." Do you agree that a series of casual affairs would be less hurtful in this situation than one sustained relationship? Are there circumstances in which the spouse of a disabled person should be allowed to have an affair, in which it would help the marriage survive?
7. Based on the events in the story, do you think it's possible to guess the author's position on the issues of a person's right to die and assisted suicide? Do you agree with Bec's decision to let Kate die?
8. How do Kate and Bec use humor to deal with a difficult situation? Were you ever surprised or troubled by the ways in which they make light of Kate's illness?
9. Compare Bec's two romantic relationships in the book, with Liam and with Mark. What do the differences between them say about how she's changed while working with Kate? How do you think being with Kate, and observing Kate's relationships, influenced Bec's decisions in the novel?
10. Look at the episode with the flower girl on pp. 211-214. Rather than adoring her or enjoying her company, Kate and Bec are both made uncomfortable by the little girl's blind affection. Why do you think the author included this scene? What do you think it says about how these two women approach the world, and how does it relate to the way Kate conducts her other relationships?
11. One review of the novel described the author's style as "deeply sensual." The writing is full of descriptions of smells, tastes and physical sensation, and the emphasis on cooking and eating is unmistakable. How does this sensuality help the author to tell her story? What does it say about her approach to the emotional and ethical questions that underlie Kate and Bec's relationship?
12. When Bec goes to visit Evan (pages 261-264) the two of them argue over their respective roles in Kate's life, each seeming to resent the other for the roles they played in the end of Kate's life. Do you think Bec is right to lash out at Evan? Based on his remarks, do you think she has misunderstood some aspects of his relationship to Kate?
Most Helpful Customer Reviews
I could not put this book down! The book pulled me in and wouldn't let me stop reading until the last page. The characters are wonderful and very real and I forgot the story was fictional. It is a touching story and very emotional. I'd highly recommend this book to anyone who loves to sit with a box of kleenex and read a wonderful book!
Every now and then you stumble across a story that is fresh, complex, familiar and insightful. The writing was beautiful and not contrived, and the story itself grabbed my attention and left me wanting more.
'You're Not You' is a stunningly beautiful novel. The story evoked so many emotions that I couldn't put this book down because I so deeply cared for the characters. I highly recommend this book to anyone who wants a refreshing take on love and friendship. The moments of intimacy-- between lovers and friends-- are honestly written without overwhelming cheesy metaphor of romance novels, but with the tantalizing details found in real life. Read this book and you will want more from this first time author! I can't wait for her next!
I liked this book because of the character development. The college student's growth and maturity was very true to life. The book was very honest and real.
I read this book several years ago- and I always think back to it when people ask me if I've read any good books lately. I loved the characters and the relationship they built. One of my favorite reads.
This is a different story and grabs you at the very beginning. I loved the characters.
This was an excellent book about caring for someone in a physical sense and emotional. The relationship between these two women is facinating. Also- if you're a foodie you will enjoy the detailed cooking and market sections of this book.
I loved this book! Michelle Wildgen makes the characters truly come to life. I cared about them and wanted to know them better. She writes about a serious topic without becoming maudlin or oppressively gloomy. Most important - You're Not You is much more than a story of illness. The real value of this book is that it challenges readers to think about life and death issues relevant to all of us. What makes life worthwhile? For how long? What do we want others to do for us at the end of life? How far should an individual go to honor the wishes of another person? This book is an excellent choice for book clubs because it can serve as the springboard for a challenging and lively discussion of issues relevant to us all.
A rather heartwarming tale about a young woman becoming a caretaker for an elderly person with a terminal illness. Rather predictably, though, the young woman learns much about life and love. The ending did feel a bit odd.
While I truly enjoyed this book, I've been thinking about it for awhile trying to figure out how to say what I want to about it. I liked the three main characters, Bec, Kate and Kate's husband, right from the start. Bec is a self-absorbed college student who begins working to help Kate, who suffers from advanced ALS, as a home aide. Bec comes off as a smart, strong woman at the beginning but as the book progresses we find that Kate is the strongest of all of them, even, or because of, her health issues. The dissolving of the marriage between Kate and her husband is not handled well, he just kind of disappears and is rather hateful in the one spot he does reappear. It didn't feel at all right. . Once Kate leaves the story I found it very hard to read. It felt like the author wasn't sure what to do with Bec after the backbone of the book is gone. I don't always need a book to be wrapped up with a shiny bow, but this book just feels like it stops. I would still recommend it, just with some reservations.
Nancy Pearl recommended this book on her radio segment, so I had to give it a try. I was very impressed by Wildgen's skill with narrative. Each page seemed carefully constructed to put the reader in Bec's shoes; when Bec was uncomfortable, I was uncomfortable. A simple and moving story of a caregiver and the woman she looks after, this book never strays into treacly, feel-good territory. Instead, Wildgen presents Kate's decline realistically and honestly, and does a brilliant job doing so.
I really liked the beginning, which alternated between the story of a 21 year old taking care of a young woman with ALS and her affair with a married TA at U of Wisconsin - and her near-submergence in both of their identities. The crux of the novel, when, at the woman's request, she had to let her die, and then her dealing with that by retreating to her parents' house for a year, just didn't seem to work too well. It ended with her becoming a happy professional cook - just not that satisfactory an ending, given all the preceding drama. Very nice writing though.
I loved this book about an unlikely 21 year old girl who becomes a personal caregiver for a woman in her mid-thirties with ALS (Lou Gehrig's disease). The disease takes this woman, Kate, from the healthy prime of her life to paralyzed in a wheelchair barely able to speak in just a couple short years - however, she still maintains her dignity, personality, even a bit of independence. Bec, her caregiver, becomes so intimately involved with every aspect of this woman's life that she almost loses her own identity, but she eventually gains a lot from her relationship with Kate. This book even touches on the sexual needs of a disabled individual - not many books go there. Somehow this book manages be very insightful, compassionate and even funny at times without being depressing or preachy about life with a chronic illness.
One of the best books I've read this year. Wildgen must have lived this experience to be able to write so well about end-of-life experience. I look forward to her next (of many to come, I hope) novel.
Wildgen shines in this first novel of two women endlessly connected in ways metaphorical and tangible. The story flows from point to point, enlisting excellent dialogue and believable humans--the kind we can all relate to and connect with in our brokenness and our power.