You're Not You (3 page)

“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.

“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 relief—I 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’s—she’s—lined 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 fit 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.