Kate made a face: raised her eyebrows, turned the corners of her mouth down.
“It’s not perfect,” she said.
I STOPPED AT THE
library on my way home, where
Living with ALS
was waiting for me. I took the book to a café near my house and sat down with a giant iced coffee, into which I had put an extra spoonful of sugar. For a few minutes I just sat there, sipping steadily, my eyes closed. I was drained. The coffee helped a bit, the caffeine making my muscles seem less tight, my head a bit clearer. Gradually I realized my shoulders were relaxing and my neck straightening out. I lifted my head. I must have been holding my head practically drawn to my chest, like a turtle.
I was thoroughly chastened. Perhaps it was something like motherhood, where you can’t imagine how hard it can possibly be to carry that little baby, who sleeps all the time anyway, and whose needs are so simple, until the day comes when it’s just you alone with the infant. Watching Evan, who had not only been doing this for some time but had known her so well before, hadn’t given me the sense of how awkward it was to step into Kate’s life and try to do it all for her, to almost impersonate her without even knowing her. It amazed me now to think how gracious she and Evan had been yesterday, though it must have taken all their willpower not to roll their eyes each time I popped
a mint in my mouth as if I were watching a movie, or glibly assured them I could do anything they needed. I really had thought I could, too. But getting her out of bed seemed to have taken all morning, and while giving her lunch I blushed at the startling softness of her skin, the sickening tug of her flesh when I opened the valve. I’d slopped nutrition shake onto her skirt, and as I dabbed at the spot, our eyes had met. I didn’t even have the wherewithal to fake a smile right then. I’d had a glimpse of the rest of my employ here, and it was one long plain of humiliation, punctuated by moments in which we froze and watched my latest mishap barrel down upon us.
But although I’d had no clue what I was really promising them, I wanted to make good on it. It would be a great salve to my pride to become skilled at this job, and fast, so that they’d think my confidence had actually been justified. I would go home and practice my eye makeup skills on Jill. Maybe I could even practice lifting her. Having Jill on board—I’d phoned her from the library to see if she would be my rag doll, makeup, and hair model, afraid she’d want to keep the virtuous caregiver mantle to herself—made the whole prospect feel more manageable. I would treat this like a final exam I actually cared about. I would cram for this job.
I was halfway through my coffee and feeling so much better I went back to the counter and got a cinnamon scone to nibble while I read. As I opened the book, flipping around to see where I felt like starting, I felt purposeful, even powerful. At least now I knew what was required of me. I’d had one bad day, but from here on out, it’d be better. I took a bite of pastry, set my feet on the empty chair opposite me, and began to read.
A lot of the writing was geared toward people who actually had the disease, so I skipped around a bit. I read portions of a few case histories, which tried to give you the sense of the person but did it awkwardly:
The petite brunette was known for her love of jogging and romantic comedies
. I was trying to match up Kate with the case studies, get a sense of where she was on the continuum. She’d had it for two years and had been in a wheelchair for most of that, but she had no trouble breathing that I could see. It seemed to me that she was fine at home as long as she had help. Someone could probably live that way for years—didn’t you always
hear stories of people who had lived forty vigorous years in their wheelchairs? I knew no such people myself, but I believed in the general stereotype. As a caregiver, I thought, I would be a maintenance worker of sorts, lending a hand well after the first shock of diagnosis, long before the palliative care at the end.
An hour later, I had finished the iced coffee and was shivering. I moved to a table near the window to enjoy the sun, losing my page in the process. I leafed through the chapter headings and was thinking offhandedly about another scone when I came to a section on prognosis.
Long-term prognosis varies for each patient
, the print read,
but the average time span from diagnosis to death is approximately two to five years
.
I sat there, perfectly still, and read it again, and still again. The sun coming in through the glass was broiling. I felt the sheen of sweat on my face, prickling in my armpits.
Around me, people were chatting, tapping their fingers on the tables, tearing into oversize cookies and pastries, spooning the whipped cream off iced drinks. I watched them, dropping napkins as they went, slopping liquid on the tabletops, shielding their eyes with sunglasses as they went out the front door.
WHEN I GOT HOME
, I could hear our stereo from the driveway. The window frames were trembling slightly. Jill was in the mood to go out.
She heard me come in and walked out of her bedroom in a short robe, a towel around her head. “Hey!” she exclaimed. The prospect of going out often excited her more than the actual evening. She liked sipping the celebratory beer while she dressed, the festive announcement of the loud music.
She was holding an eye pencil. As I got closer I saw that one of her eyes was made-up, the other undone. I set
Living with ALS
on the coffee table, gazed at the plain block letters on the blue cover for a moment, then turned it facedown.
“I forgot and did one eye, but you can do the other if you want,” Jill said, holding out the eyeliner. I shook my head. My resolve was flattened.
“Don’t worry about it,” I said. “Just go ahead and do your makeup tonight.”
She shrugged, set the pencil down, and took the towel off of her head, running her fingers through her hair. “How was work?”
For a moment I couldn’t even remember. Then it all came back to me.
“What are you wincing at?” Jill paused with her hands still tangled in her damp hair, staring at me.
“Nothing,” I said. I stretched out on the couch and closed my eyes. “It was a hard day. I got her up and showered her and that was maybe the worst part. I don’t think you told me it was this hard.” I fanned myself with my shirt, giving it up after a moment. It wasn’t doing any good anyway.
“Didn’t I? I don’t remember it being so hard. I remember it more as weird at first,” she said.
“Oh come on,” I said. “Just say it was hard, Jill. You always talked about how nice they all were but I’m on to it now, you know. You didn’t want to admit it just sucked.”
Looking at her now I felt as though the whole thing was her fault: She was the one who used to say that volunteering at the home had been such an amazing experience, so fulfilling. I never would have thought I could do this if it weren’t for her. I would have volunteered with Greenpeace if I wanted to make a difference so badly, become one of the people who accosted you with their notepads at the bottom of Bascom Hill.
“It didn’t suck,” she protested. She looked at me and sighed, then sat down at the end of the couch, moving my feet out of the way. “It kind of sucked. At first. But it got better. I didn’t want to complain.”
This only made me feel surlier. I wanted to complain. Jill was always trying to put the best face on things, which right now seemed like pure fraud to me. The thing about Jill, which it had taken me some time to realize after she started piercing her ears all the way up into the cartilage and dyeing her hair pink in high school, was that she looked rebellious, but her upbringing, our town’s characteristic churchgoing and community-centered activities, had left their mark on her. Hence the volunteer work, the glossing of what I now thought must have been a truly hellish job into something sweet and edifying.
“How did you feel about all those people?” I asked. “You knew they might die any time, right?”
She paused, tapping her eyeliner thoughtfully against her front teeth. “Deep down, for some of them, you know it might be best. And then I felt really arrogant to think that I could judge somebody’s life like that, to basically say they’re better off dead. But some I really kind of loved, and even if they were miserable I wanted to keep them around.” She shrugged. “Don’t forget I didn’t work there very long. Not even a year. My parents made me.”
“They did? I thought you chose it. You know, because of your grandmother.”
“Well, it was that or take part in some repellent Pro-Life church campaign. Not much of a choice. It wasn’t like I was on fire to be with the elderly instead of out smoking pot with you and Steve Brearly.”
“Huh. I remembered it totally differently. Well, let’s forget I brought it up,” I said. I closed my eyes. “You know, it’s really freaking hot in here.”
“I know. I think I saw another roach in the kitchen too.” She peered into the blank television screen and lined her other eye. “They really threw you in today, huh?”
“Supposedly it’s better this way.”
“You know, at least she’s married,” Jill said. Her voice was a monotone with concentration, the skin of her eyelids stretched between the V of her fingertips. How was I ever going to do that to Kate? “I’m sure you won’t have to shower her too often, so don’t ditch this job too because of one hard day.”
“I’m not ditching anything,” I said, stung. Apparently I had a pattern. “Anyway, showering is the least of it. It’s worse for her than me, I bet. Let’s just forget it. How was temping?”
“Vile. I read the same issue of
People
three times and someone called me ‘doll.’ ” She straightened up and turned to look at me. “We’re meeting Heather and those guys at the Union in an hour and a half, by the way.”
“Who’s driving?”
Jill rolled her eyes. “After today? I’m calling a cab. We’re getting loaded.”
She went back in her room to get dressed, closing the door behind her. I stayed on the couch, staring up at the ceiling. I was thinking that, without even trying—in fact, while actively fighting off the influence—I had adopted some of my mother’s vocabulary of horizon expansion and branching out. That fetish was really hers more than mine. She signed me up for gymnastics and acting lessons when I was younger, later pointing out courses in the UW catalog that I would never have thought to take. Over the years I had indeed learned to balance on a narrow beam and leap over pommel horses, joined the freshman cast of
The Sisters Montague
as the flighty sister, and taken the occasional class in “Goddesses and Feminine Powers” and ended up enjoying it. In fact, I had been very good at gymnastics, though at first I had hated it on sheer principle (as a child I insisted on hating everything my mother pushed me into for the first several weeks) and faked a series of injuries my parents wisely ignored. After being forced to go for a month I had discovered that my usual lack of care for speed and objects around me, which translated into clumsiness everywhere else, transformed on the mats into sheer fearlessness. I was devoted to gymnastics until I was sixteen. My high school didn’t have a team, and I could tell the cost of the private lessons was taking a toll, so I gave it up. Not all my attempts were so successful. Singing lessons were an exercise in humiliation from the start, and, more recently, my brief foray into churchgoing had died off as soon as it began.
I reached over and adjusted the fan so it blew right at me. I was sweating but hadn’t quite gathered the energy to shower yet. I gave myself another five minutes and closed my eyes.
Church would not have been so bad except that I had told my mom I was going to attend St. Patrick’s every week. I had this idea that if I went to church I’d get involved in a group of some sort, or volunteer a bit. And maybe I just liked the idea of starting each Sunday with something welcoming and uplifting. When I informed my mother, she paused for what seemed to me an inordinately long time and then responded, “Well. That’s nice. Is there any particular reason why you chose to do this through church?”
My reasons seemed too vague to enumerate, plus I knew she’d suggest I volunteer at Planned Parenthood like she did if I really felt the urge, and I only wanted to try something different from what my mother would have done. But instead of saying so, I found myself on a minor tirade about the enigma that is faith. She responded skeptically. I admit the resolution struck me soon after Christmas, around the time or just after I had met Liam (my parents did not know that part), and the urge waned almost by the end of the first sermon, but out of sheer stubbornness I went every week for a month. It soon became clear I didn’t really want to join the Bible study groups or volunteer in the cry room, my atheist mother was scrupulously silent on the topic, and Liam often had free time on Sunday mornings while his wife met her book club. Lent came, the season for sacrifice, and I gave up church.
The whole thing had left me unsettled. My visits to Kelly Jervis notwithstanding, kindness and concern for my fellow man seemed to be playing a pretty minor role in my life. Jill, who probably should have been my mother’s daughter, not only had volunteered at the nursing home but voted Democratic and was forever forwarding me informative e-mails from NOW. Everyone else on campus seemed energetically outraged by any number of causes, papering the walls with flyers and meeting announcements and petitions. All those causes always mattered to me when I thought about them, but they didn’t light a fire in me as they did in other people. I had always thought of myself as aware and thoughtful, but since January it had begun to occur to me that most people believed this of themselves, even as they cheated on their lovers and averted their eyes from the homeless. You could ask a wife beater if he was a good person, and he’d probably say yes. What if I was really one of them, convinced I had sound reasons for everything I did? The fact was, I could have worked at a soup kitchen whether I went to church or not, yet I didn’t. And I could have dated plenty—at least a few—available guys my own age, but instead I sneaked around with Liam, and what was more, I liked it. I wanted to think there was goodness in me, some tough silvery cord of it like a second spine—hidden in its furrow, but resilient.