Along For The Ride

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.

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