Up until two weeks before her death, my mother drove her little Toyota through the streets of Boston every day. She couldn’t do it alone; my father had to help her. He guided her in and out of the car and turned the key in the ignition. Once, I saw him lean across to spin the wheel for her during a tight turn. My father didn’t drive himself. He was a semiretired merchant-marine officer who could navigate a cargo ship through crowded coastal waters, but in all my life I had never seen him behind the wheel of a car. Mom did all the driving. When my brother and I turned sixteen, we just kept on using public transportation. And by the spring of my first year in college, when my mother started showing the first signs of amyotrophic lateral sclerosis, or ALS, she was still the only driver in the house.
As my mother’s condition progressed and paralysis and muscle-wasting set in — first in her tongue and throat, then in her extremities — she sought out treatments that took her all over greater Boston. She drove to the health-food store practically every day to purchase products like soy lecithin and evening-primrose oil, which she would mix with fruit and yogurt in a blender and feed through a G-tube directly into her stomach. She drove to the holistic-health center for weekly consultations; to the osteopath for biweekly adjustments; to the neurologist, the acupuncturist, the herbalist in Chinatown. She drove to the medical-supply store to buy an adjustable bed and a bathtub rail and a machine to suction the spit from her throat.
Each summer I’d come home from my Midwestern college, and my father would set sail for northern Europe or the Middle East. In his three-month absence, it was my job to care for my mother. Often this meant helping her drive.
We lived on Beacon Street, a busy four-lane with trolley tracks running down the middle, cars double-parked in front of the greengrocers and delicatessens, and everyone jockeying for position in the traffic stream. After two miles we’d hit Kenmore Square, where three avenues merged into one broad, ill-defined intersection and pedestrians jaywalked between Fenway Park and the all-ages nightclub. Then came Storrow Drive, famous for its bottlenecks, and finally the terrifying tangle of the Central Artery. My mother was unfazed by all of it. She drove with one foot on the accelerator and the other on the brake; her paralyzed fingers, which were locked in a permanent curl, lay over the top of the wheel.
Negotiating Boston traffic is something I avoid to this day, but my mother did it fearlessly for the duration of her four-year illness. She drove when her arms and legs grew weak, when she couldn’t smile or chew her food, when she needed a walker just to get down the hall. And when her lungs began to fail her, as they do toward the end with most ALS patients, she still drove. Seventeen years after my mother’s death, I struggle to make sense of this. I’m amazed that my mother drove for as long as she did; that she drove so well, considering the circumstances; that my father was complicit in this act of negligence; that I was equally complicit. And I’m amazed that my mother didn’t kill herself, or me, or some hapless child crossing the street. It’s our sheer dumb luck that astounds me most of all.
Though Boston traffic didn’t rattle my mother, plenty of other things made her nervous. She panicked if she thought she smelled gas in the kitchen. The odor of a struck match or car exhaust from the alley could convince her that horrible fumes were leaking out of a cracked pipe somewhere and might suddenly ignite, incinerating us all. Until I was thirteen, she would periodically show up in the lobby of my school to walk me home, which I knew meant that her anxiety had gotten the best of her, and she’d become afraid I would be abducted in the few blocks between the school and our apartment building. I dreaded seeing her there in her long brown coat and oversized knit hat, her knee socks and wraparound skirts and gum-soled shoes. She was older than everyone else’s mother by a good ten or fifteen years, wore no makeup, and refused to dye her graying shag. All of this would have been bad enough without the embarrassment of her being there to walk me home.
“I’m a worrier,” she liked to say, almost cheerfully, as though her anxiety were a physical quirk she had come to accept, like webbed toes. She handled her anxiety by placating it, catering to its whims — paying for ocean-liner tickets to England, for example, rather than flying there cheaply. Driving, too, was a way of dealing with worry. If she drove my brother and me to our friends’ homes, or to the mall, or to parties, it meant she knew exactly where we were at all times. Never mind what we did once we got there; she didn’t concern herself with drugs or unprotected sex. Her anxiety was focused on highly unlikely events, such as the disappearance without a trace of her teenage children. She’d pick us up whenever we called, even after midnight. My friends and I would sit stacked on one another’s laps in the back of her Toyota, giggling and reeking of smoke, while she delivered each girl home.
Driving preserved the illusion of control for my mother. When she became ill, she lost control in so many devastating ways. Because the muscles of her face and tongue were the first to go, simple interactions were close to impossible. She couldn’t click her tongue to call the cat in from the alley, or place an order over the phone. Everywhere we went, she was treated like an imbecile. People either didn’t know how to communicate with her, or simply refused to try. The mechanic at the Toyota dealership took one look at her thin face and sagging lower lip and addressed all his comments to me instead, as though she weren’t standing in front of him. Even medical professionals — the nurse who administered her hormone injections at the hospital, for instance — would speak to my mother loudly and slowly, with overburdened facial expressions, the way one does to a small child. My mother would write, I’m not deaf, on her pad, tear it off, and hand it to them, trying to smile. The notes confused people; for the most part they hadn’t realized that they were raising their voices or speaking in simple sentences. It’s just that my mother couldn’t give them the usual cues that there was a mind at work behind her face. She couldn’t smile pleasantly or draw her brows together to show keen interest. She couldn’t modulate her voice to convey humor or annoyance or irony.
None of that mattered when my mother was driving. The car — a dull blue Tercel, generic and unobtrusive — provided almost total anonymity. Crossing the Massachusetts Avenue Bridge toward Cambridge, she was a part of the world, pulsing along with the rest of the traffic above the glittering Charles River and its scattered white sails. Driving allowed my mother to keep pace with the rest, to veer east or west at will, to bear down on the pedal with the same easy force as anyone else on the road. When the strength in her arms and legs began to ebb, she could still get into the car (with help, of course) and charge from point A to point B. It was a triumph over infirmity, a way of denying her limitations. Even if my father and my brother and I had known how to drive, it would have been difficult to refuse her.
But we didn’t drive, and here I am tempted to start making excuses for us. My father suffered an accident in his late twenties: fell down an empty elevator shaft and cracked the ball of his hip. For close to thirty years, until hip-replacement surgery became commonplace, he walked with a cane and used a vibrating heating pad to relieve the stiffness in his leg. Had he been a driver before his accident, I’m sure it would have been easy enough for him to continue. But he had failed a driving test several years earlier, and the injury to his leg made him even more reluctant to learn. Anyway, he was married to my mother at that point, and they didn’t own a car. If they ever borrowed or rented one to take a vacation, my mother was glad to drive.
As for my brother and me, we didn’t have an excuse, other than growing up in Boston. The subway gave us access to downtown and Harvard Square, record shops and thrift stores and the theater district. Mom wasn’t diagnosed until after I’d left for college, and before that she was perfectly willing to chauffeur us anyplace that public transportation wouldn’t. And so I developed a passenger mentality. I was comfortable in my role as cargo and enjoyed riding in the bucket seat, one foot propped on the dash and my eyes staring out the side window. I never had to think about directions or lane changes or blind spots. Once I had helped my mother into the car and turned the key in the ignition for her, I let my gaze drift out the window and became lost in thought. If she made mistakes in judgment, if her reflexes were slow or her lane changes clumsy, I wasn’t aware of it. Mom could have been driving on the wrong side of the road, and I wouldn’t have noticed.
For this reason I have a hard time saying at what point it became unsafe for my mother to drive. At first, before she lost mobility in her hands, I’m sure that even a doctor would have given her the OK. Even after her muscles began to stiffen, it was hard to say the illness was an impediment. My mother was an artist and good with her hands. Holding a pen in the curled tips of her paralyzed fingers, she wrote as legibly as she ever had and could produce a passable forgery of my father’s signature on bank documents when he was out of town. And she continued to paint — small pen-and-wash illustrations, nothing too ambitious, but better than anything I could ever produce with my own, fully functioning, hand. After a while, though, even I recognized that she needed to stop driving. But I have no memory, not a single one, of my mother driving poorly.
I do remember clearly the toll that the illness took on my mother’s body. In the last year of her life, her arms and legs were so weak that she couldn’t raise herself off the toilet. I remember her frail ribs and the sallow flaps of her breasts. She would sit on a plastic seat in the shower, and I would swab her armpits, my whole fist disappearing inside the hollow cavity. Occasionally she would lose her balance while standing at the kitchen counter; I caught her before she fell backward on two occasions. Once, no one caught her, and she twisted her leg and bruised her lower back. The summer before her death, she was sitting at the kitchen table pouring puréed vegetables into her G-tube through a funnel, and somehow her head tipped too far back and flopped over like a baby’s. I was there at the table, and I reached over without a word and pushed her head up to balance it. I didn’t acknowledge what had just happened, and neither did she. It was our habit to pretend that none of this was happening.
Selma, my uncle’s accountant, was the first to suggest that somebody else in the family had better learn to drive. She was a motherly, practical woman in her late forties, deeply tanned year round, and wore gold chains around her neck and gems on her hands — so many that another, less-imposing woman might have been weighed down by them. She worked in my uncle’s downtown showroom — he was a shoe wholesaler — in a cubicle surrounded by rack upon rack of designer pumps. Mom did secretarial work there until two years after her diagnosis, and I worked there during the summers, typing up shipping labels and making photocopies in the airless back office. One afternoon Selma confronted me in the break room while my mother was busy up front. “Joanie, honey,” she murmured, “I hope you’re planning on getting your license one of these days. You know your mother can’t keep this up much longer.”
It was the summer after my freshman year in college. Mom’s hands were still basically functional, but she’d begun to have choking fits while eating her lunch — long, excruciating ones in which every cough seemed more like a scream. Selma had already taken a CPR class, so she could clear my mother’s airway if it came down to that. The fact that Selma had done this for my mother meant that I had to suffer her lectures.
I knew that Selma was right, but it was complicated. For starters there was my own reluctance to drive, my basic, gut-level dread of all things mechanical. The thought of taking the road test at the DMV in North Station, in the shadows of the highway overpass, made me dry-mouthed and nauseated. Beyond this was the fact that, even if I did learn, my mother would still want to do most of the driving. Just signing up for lessons would be a reminder — to my mother, and to myself — that she was sick and getting sicker and would eventually die.
But I kept all this to myself. “What happens when I go back to school?” I said to Selma.
She shrugged and seemed momentarily at a loss. My father was sixty-three at that point, and no one expected him to learn. My brother was just sixteen — a bright, offbeat kid fast flunking out of public school. He was also rarely home, and when he was, he spent much of his time locked in his room making elaborate pointillist drawings with an expensive marker. He couldn’t be counted on to bring in the mail, much less take my mother to an appointment.
“At least you could help her out during the summer,” Selma said finally. “It’s better than nothing.”
“Of course,” I said. “You’re right. I’ll get on it. I’ve been looking into it already.” It wasn’t a total lie; I’d gone down to the DMV twice before to take the written exam and obtain a learner’s permit, but both times I’d let the permit expire without taking a single lesson. And my answer satisfied Selma for the moment, which is what I wanted.
An encounter with someone like Selma — a decent, pragmatic soul who could evaluate my family’s predicament and come up with sensible solutions — was always embarrassing. Sensible solutions were not my family’s forte. Certainly it would have made sense for my father to take driving lessons; he’d had his hip replaced by that time and could probably have handled it. I should have learned, and my brother could have gotten started as well. If none of us was willing, we could have taken taxis everywhere — expensive, but not out of the question. Perhaps there were even charity organizations that provided transportation to doctor appointments. At the very least, we could have limited my mother’s time on the road by running errands for her. I could have taken the trolley to the co-op with a shopping list in hand, but it never occurred to me to suggest it. Even now it’s hard to imagine telling my mother to relax and let me take care of the shopping. “You take it easy,” I might have said. “No reason to wear yourself out. I’ll just hop on the subway and be back in a jiffy.” It sounds reasonable, the sort of thing a good daughter might do. But I know how deeply hurt my mother would have been. I’m not a shut-in! she might have scribbled on her pad, her eyes big and moist with insult.
Maybe I wasn’t a very good caretaker for my mother: I was clumsy bathing her, didn’t have the upper-body strength for lifting her, and goodness knows I’ve always been a miserable housekeeper. But I knew how to make her feel like a human being: by treating her the same way I always had, sharing with her the complicated details of my love life, asking her advice, showing her the bleak, overwrought fiction I produced in my creative-writing classes. Dad still prepared overcooked vegetables for dinner and sang dirty songs he’d picked up overseas during the war; my brother still came home with fresh body piercings, trash-picked art objects, and one time a domesticated rat that sat on his shoulder eating a cube of sweet potato. This was the messy routine of our family life, and none of us dared change it. We were trying our best to be normal.
Being normal, though, meant lying to members of our extended family. When my mother’s cousins and aunts called to find out how she was faring, I was under strict orders to tell them nothing. “She’s getting around still?” Cousin Blanche asked, her voice low and gravelly, conspiratorial almost. “I heard she’s having some trouble now with walking.”
“She’s just fine,” I answered. “She’s in good spirits.” That was my line. I was supposed to say it no matter what I was asked.
“What are the doctors telling you? There’s hope for a cure?”
“Oh, I don’t know about that. Mom’s fine, though. Just fine. She’s in good spirits.”
“You’ve got someone professional taking care of her, I hope. A visiting nurse?”
“That’s really not necessary at this point. We’re doing fine. Everyone’s in good spirits.”
Truth is, I’m a terrible liar. I can’t improvise, and I hate being evasive. One evening I just couldn’t stand it anymore and let it slip to Aunt Eva that my mother had been fitted with a G-tube. I was standing in the overheated hallway, where our telephone sat on an old, tile-topped table. As I stared at one tile that was cracked diagonally, through the stem of a painted flower, I heard my mother get out of bed with effort and make her way down the hall, the thump and scrape of her walker on the wood floor. When she reached the telephone table, she scribbled a note on her pad and shoved it at me: Get off the phone NOW.
“I’m sick of this,” I hissed at her when I’d hung up. “People ask me very specific questions; do you know that? What the hell am I supposed to say to them?”
It’s nobody’s business! she scribbled, then waved her paralytic right hand at me, unable to show her fury in any other way. By then she had completely lost the use of her voice, and so she wrote notes constantly. They were scattered all over the apartment: little pink slips mixed in with the mess on the kitchen table or hanging on the lip of the sink; brief notes, always brief, because her hand tired quickly. In the days after her death, I kept discovering fragments from her last conversations with my father: With the good knife and Use more soap and Call Dr. Posner and Don’t get upset.
I did not get my license, but I did bring a boyfriend home from college the summer after my junior year, which I figured was just as good, if not better. Peter had graduated that May, and he set himself up in a little flat in Porter Square and got a minimum-wage job working the night shift at a halfway house for boys just out of juvenile hall. (He’d chosen to devote a few years to unskilled social work for the greater good of the community.) Peter wore John Lennon glasses and kept his ginger-colored hair in a ponytail. He was tall and heavy in the shoulders, knew how to build a bed loft and cook vegetarian casseroles, and cleaned enthusiastically. Eventually his missionary zeal would wear on me, and our relationship wouldn’t survive much beyond my mother’s death. But for a couple of years, we were a perfect match: I with my needy family, he with his desire to be needed. That summer I was working as a park ranger at a local historical site, and my schedule didn’t have much flexibility, but Peter’s night job left him free during the day to accompany Mom to her appointments. When she was feeling more fatigued than usual, she’d actually let him drive.
It was Peter who pointed out to me that my mother could not drive particularly well. Her reflexes weren’t good, and she had a habit of waiting until she had reached an intersection before getting into the turn lane. When Peter first mentioned this to me, I wasn’t that concerned. Yes, I seemed to recall that my mother spent a good bit of time sitting at intersections waiting for other cars to let her in. And, yes, there was honking from time to time. But this had never seemed like a problem to me. I had always assumed that waiting at intersections was what one did.
Peter’s concern must have gotten me thinking, however. One morning not long afterward, I was sitting in the waiting room of the Cambridge Center for Holistic Health, a spacious Victorian on a busy stretch of Massachusetts Avenue, while Mom was upstairs having her blood drawn to test for heavy metals. A young receptionist, not much older than me, was sipping her bottled juice and flipping through her Rolodex, and I realized that she probably assumed I was there to drive my mother home, and not the other way around. I thought about what Peter had told me a week earlier: that the Toyota mechanic had taken him aside and told him that a woman in my mother’s condition really shouldn’t be on the road.
I decided to broach the topic with my mother — casually, just to see if she might not be feeling the strain herself and looking for an excuse to let Peter do the driving. I remember the note that she wrote in response: I’m an excellent driver. When I explained that it was the other drivers who concerned me, that maybe they weren’t excellent and at some point she might have to react quickly, she shook her head and wrote, I’m very careful. Anything I said after that was met with head shaking and finger pointing, first to one note, then the other: I’m an excellent driver. I’m very careful. It was late July, and my father was coming home in two weeks. Then the problem would be his — and rightly so, I figured. Surely the job of getting her off the road shouldn’t fall to her daughter.
I should have said something to my father when he arrived home, but I just couldn’t. He was exhausted, as usual, short-fused, and annoyed with me for leaving, though he would never have admitted it. It was hard on him, playing caretaker nine months out of the year, cleaning up the mess on the counters after my mother blended her meals, stooping to help her put on her elastic stockings, rinsing the mucus out of her suction tube. Meanwhile it was my senior year, and I was off to London for a semester, my last chance to study abroad before graduating. Instead of coming home for fall break, I would be sitting in a meadow on a mountain north of Lake Geneva. Whatever I might have said to my father about my mother’s driving, I’m sure he wouldn’t have appreciated it.
I hoped that the two of them would come to the right decision on their own. They never did, which makes a kind of awful sense to me, though I wish it didn’t. I wish I could simply be astounded, the way my friends and colleagues are whenever I tell them this story. Instead I understand too well my parents’ siege mentality, drawn inward and focused on short-term goals: one tube feeding, one sponge bath, one trip to the grocer’s. Like an old cat I once had who, though diabetic and crippled with neuropathy, would drag himself around the perimeter of the yard, sniffing the weeds for signs of intruders, my parents just kept going day after day until spring came and I graduated and my father and I traded places once more. And I could see then that it had to stop. She was thinner and used her walker almost all the time now. Plus there had been an incident: Peter had gone shopping with her while my father was at the eye doctor, and when they’d gotten back into the car, she had shifted into reverse instead of drive. She’d managed to get her foot on the brake, but not before she’d shot back a good ten yards. Luckily no one had been behind her, not even a parked car, but I knew that our days of relying on luck were running short. Peter and I agreed that we didn’t dare get in the car with her. And without our help, she couldn’t drive.
Somehow I forced myself to tell her. At first she assumed that she and I were having the same discussion we’d had nine months prior. She pulled out her pad and wrote, I’m very careful. We were sitting on an old blanket chest in the hallway. On the wall across from us was a piece of Samoan folk art, a huge tapestry made of painted bark that my parents had bought just after the war. It was brittle and buckling, shredded across the bottom portion. Siapo, the cloth is called. The Samoans use it for funeral shrouds, but I didn’t know this at the time. I stared at the geometric design, the pinwheels of dark triangles, trying to find words to tell her. “You could kill someone,” I said. “A child maybe. Is that any way for all of this to end?” I mentioned Boston drivers, the need for quick reflexes. She wrote again, I’m an excellent driver, and reminded me, as though I didn’t already know, how much she loved to drive. I had to tell her that I wouldn’t get in the car with her behind the wheel.
Now it was my turn to be stubborn while she gestured toward one note, then the other, grunting angrily. “I’m sorry,” I kept saying. “I’m sorry, Mom.” It was almost easy at that point, the inertia of refusing to comply.
Her eyes smoldered wetly, but she wouldn’t look at me. She scribbled, You’re killing me, then raised herself with effort and made her way down the hall, holding the wall for support. I crunched the note up and put it in my pocket. I suppose it was her last line of defense, to say that. Probably she believed it, which makes me feel sad, but not guilty — not exactly. Getting my mother off the road remains the single wisest decision I have ever made in my life. I can’t regret it. But I can’t congratulate myself either.
When my father’s ship came back to port in the fall, he clearly wasn’t pleased about what I’d done, but he didn’t say anything, and I didn’t bring it up. The next day Mom was back behind the wheel. I moved into Peter’s little flat in Cambridge and took a job teaching teens with behavioral disorders, kids who’d been slugged by their parents, who couldn’t keep still, who sniffed white-out and airplane glue and flew into desperate rages when they didn’t get their way. If anything, the job made me feel lucky: I was educated, gainfully employed, and operating well within the limits of acceptable behavior. It also kept me busy. I visited my parents in the evenings and tried not to think about what pothole-riddled obstacle courses they might be navigating during the day. Mom continued to drive until a week or two past Thanksgiving. On December 23, she suffocated to death in the middle of the night.
It’s years later, and my father and I have never talked about the decision I made toward the end. I don’t know whether he faults me or regrets the way he handled the situation. I imagine he probably doesn’t regret a thing. Why should he? The nightmare accident that could have happened never did, and we will never know whether or not it would have happened during the summer of 1986, when I got my mother off the road. My father can take comfort in never having betrayed my mother. I, on the other hand, have only the reassurances of friends and acquaintances that I did what I had to do. I’ve been told this by a friend whose husband has Parkinson’s, and another whose mother suffered a stroke in her eighties: It never feels good. It feels awful. Eventually you do it anyway.
I’m nearly forty, but it’s still easy to remember what being in the car with my mother was like. I’m curled in the sun-warmed passenger seat. Clouds as bright as meringue hover in the air above Boston. My mother’s ownership of the road is a plain fact of life, a comfort even, the way she carries me along with her. She loves to drive. Up ahead, the CITGO sign is a beacon in red and blue. Beyond are the towers of Back Bay, the heat and clutter of Tremont Street. Capably and with utter confidence, my mother is bringing me someplace. I don’t have to think about how we’ll get there.