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 explained—she 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 it—she 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 him—he’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. No—they 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 feeling—both pleasing and ominous—that 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 colleg
e?”
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 you—assuming this all works out, of course—that 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 sandals—no, a suit, high heels—nodding 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.
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