Where the Light Gets In

Chapter

1

Our pale blue station wagon fishtailed down a hill on icy snow. Home was just ahead, a sharp and narrow right turn through stone pillars off Howe Place in Bronxville, New York. We were in trouble—moving faster, skidding nearly out of control. If Mom spun the wheel too hard and we missed the driveway, the Buick would whirl a hundred feet to the bottom of the street and plunge down a flight of stairs on the other side of an intersection.

There were no rules in 1979 about kids sitting in the backseat. So I was Mom’s co-pilot in the front. I could feel her panic rise. I looked out the window at the cold black sky and prayed in fear to the brightest star. In my eight-year-old’s world, it was the soul of my grandfather, who was something of a saint to me and had died months earlier.

Grandpa, I prayed. Save us. We need you.

“Shit,” Mom said. I’d never heard her say that word. I prayed harder. Grandpa, PLEASE. Help Mom.

We were entering the perilous turn. She seemed more alarmed than I’d ever seen her as her hands gripped the wheel. I struggled to keep my eye on that star. Time slowed. My mother screamed.

“Shit! Shit! Shit in a bucket!”

The car swerved, turned, and slid between the pillars. A layer of snow on our driveway crunched under the tires, and then we were in our garage, safe.

There was a silence, broken a few moments later by tentative laughter.

“What about a bucket?” I snickered.

“Sorry,” Mom said, a little embarrassed. “That was just something your grandfather used to say.”

A miracle. I thanked the star.

For one of the first times in my life, my mom had become someone else right before my eyes. I was both startled and intrigued. Who was this mother of mine?

I’ve asked myself that question many times since she was diagnosed with primary progressive aphasia, a rare form of dementia, in 2005 at the age of sixty-two. She has since become someone I barely recognize.

I miss her—the mom from long ago, before any of this started.

As I write this, I’m looking at two black-and-white photos taken on my wedding day more than thirteen years ago. The separate shots of Mom and me are nestled artfully together under clear, clean glass and a bright white beveled mat.

After Brad had kissed me, a gospel choir scattered secretly throughout the congregation stood up and belted out “Oh Happy Day.” Brad and I paraded back up the aisle and then snuck into a balcony to watch our dressed-down, rowdy guests. They were cheering, waving, singing “Amazing Grace” and a raucous “Praise God.”

And there was Mom in the middle of everyone. She seemed euphoric.

Later I arranged the two separate photos of that moment in the same black frame. She is in the lower corner, with her arms held high and rigid. Her one visible eye conveys a mixture of ecstasy and perhaps fear about what was beginning to happen to her. Above her picture is one of me. I’m looking up, laughing. I am lifted by the love of my family, especially my mother.

Below the photos is a quote from something I’d told an interviewer at a magazine a few years earlier for their Mother’s Day issue. I copied it down in black ink: She’s still that voice in my head that says, “Go for it! You can do it! Even if things are scary or difficult or you’ve never done them before, do them anyway!”

I put this collage together for Mom after my wedding as a sort of peace offering. Her bouts of anger had become more frequent recently, and I was hoping to put all of the strains of the engagement and wedding behind us. I think I knew she needed encouragement. And I wanted her to know I was grateful for all that she’d given me up to that point in my life. It was true: my mother had always urged my brother and sister and me to “go for it,” beginning in my earliest years.

When I was a child, we often went to Cape Cod in September to visit my grandmother after Grandpa died. Most beachgoers were content to sit on their towels at the end of the tourist season. But Mom wouldn’t stand for that.

Despite the first cool whisperings of winter in the breeze or a cloudy sky, she would gather Jay, Ash, and me up off the sand at Old Silver Beach, and we’d hold hands and charge toward the water, past the lounging local residents.

“Run right into the waves!” she’d instruct. “It’ll be great!” Mom knew that if we waded in tentatively, we would never get wet above the knees.

I was the oldest, the parent pleaser and rule follower. Back then, it was up to me to set a good example for Jay, three years my junior, and Ash, the youngest of the family. Mom’s enthusiasm was an invitation we couldn’t reject.

“We’ll do it together!” she would yell. With goose bumps on our tanned skin, we raced, shrieking, into the frothy waters of Buzzards Bay, let go of each other as we fell into the waves, and bobbed back up. She was right. It was great.

My mother was teaching us not to shy away in the face of a challenge. Not to shrink from what was uncomfortable.

One day in the future, when scientists study her donated brain, they’ll find signs of her disease. They might see plaque—waste material that looks like dust balls under the microscope. They may zoom inside the cells, searching for tangles resembling a jumble of spaghetti. Her brain overall will most certainly be smaller than normal, and some of the tissue might be slightly yellow or green instead of the usual gray.

But they won’t be able to detect my mother’s courage. They won’t see her stubbornness, or humor, or infectious passion for life. They won’t be able to measure how much she loved her family or what kind of parent she was.

My mother is not her disease.

She was the one who got me to appreciate the excitement of thunderstorms. When hurricanes threatened, while many residents were nailing plywood over their windows, Mom was driving us to the beach to see the wild wind churn the waves. It was her voice in my head that told me to go to the cattle-call audition for Father of the Bride when part of me wanted to stay in my safe dorm room. Hers was the whisper in my heart that urged me to say yes to the adventure of flying upside down in a biplane in the middle of Africa when I was twenty-four.

Seek out adventures, she told us. Come back with stories.

In the meantime, she didn’t tolerate whining. It wasn’t in her genetic makeup. Her British grandfather survived four and a half years in a Japanese prison camp in Hong Kong but didn’t talk about it after he came home. Her stockbroker father, George Payne, never outwardly despaired when markets plummeted. “It’s only money,” he would say.

Once I saw my grandmother Betty pull a dish out of a hot oven with her bare hands, and she didn’t even flinch. My mother’s family history was a tale of determination and endurance, and it influenced the way she raised us—including the way she reacted when anyone in the family got sick. When I was about ten, Mom gave me an eye roll when she overheard me on the phone with my father describing in detail the way the cut on my right palm felt after I’d fallen and gashed it on a rock.

“Pain, sharp pain, pain, sharp pain,” I said, milking the attention.

“Oh, brother,” Mom said. “You’re fine.” No big deal. Get back out there. It healed, and she was right. I was fine, even though I still have quite a scar.

Mom launched me at an early age toward escapades and quests, some braver than she’d ever attempted. And her deep, no-nonsense love helped keep my feet rooted to the ground.

But as Mom’s illness began to overtake her, dementia distorted her view of the world and erupted as extreme sadness, rage, and fear. Gradually I lost sight of the mother I used to know. I was shocked by the woman who seemed more and more alien.

My family made many missteps. I regret the things I didn’t have the nerve to discuss out loud. I wish I hadn’t listened to Mom’s misguided requests for secrecy and autonomy rather than to rational, practical advice from people outside the family who could have offered help to both of my parents. I’m sad that I didn’t keep a closer watch on my father, my mother’s primary caregiver. I’m sorry I had to be a long-distance caregiver, caught between tending my mom and mothering my own children. I hate that my sister wound up carrying so much of the burden.

Eventually, though, surprising blessings began to emerge. As I begin this story of my mother, I realize that our lives today are no longer black and white. I see Mom and me in a different frame now. I believe we’re healed in ways we couldn’t have foreseen.

The woman I visit today can no longer act as a mother or wife. Her single room and bath in her new home is on the fifth and highest floor, the last stop for residents requiring advanced “memory care.” She sits in a wheelchair much of the time and rarely speaks. Her head droops to the right. Her expression is vacant. She sleeps often.

But her caregivers love her. They say she is impish. And empathetic—she senses whether the people around her are happy or having a hard day. She makes a face if someone is being inappropriate, and she often laughs at the sound of music. She occasionally still seems to know some things. I continue to learn from her, in profound ways.

Today she’s near the counter where nurse assistants dish out a hot lunch. Her wheelchair faces a bank of curtainless windows with a panoramic view of lush treetops. I don’t know how much of her own story, or mine, she remembers now.

She sucks Fresca or cranberry juice mixed with water through a straw when I put it to her lips. I offer her minestrone soup, and she clamps down on the spoon and won’t let it go. I wait. She releases and sighs, closing her eyes.

I wipe a smear of soup off her chin with a napkin. Her eyes open and look at me. Connection! She shakes her tilted head slightly.

“Why?” she asks. It is a question she has asked before. It is one I ask a lot. Why? Why is this happening to you, Mom?

I imagine what she’s thinking. Why can’t I have an apple martini? Why are you staring at me? Why am I in this place with all these strange people?

“I don’t know,” I answer, and wait. She sighs.

“Shit,” she says.

“Shit in a bucket,” I answer. And she laughs, mouth open wide and eyes sparkling. For an instant there she is again.