Stiltsville: A Novel (32 page)

1993

O
n the afternoon of my fiftieth birthday, I thought I saw my sister-in-law under the bougainvillea behind the back deck of our house. I was standing at the kitchen sink, watching the canal—the water reflected the sunlight in spots, as if revealing coins scattered just under the surface—and there Bette appeared on the edge of my vision, near the fence that separated our yard from Mr. Costakis’s, wearing a lavender caftan I’d seen her wear a hundred times. I dropped the bowl I was washing—it cracked open against the porcelain sink—and ran to the kitchen door, which was locked from the inside. I turned the key, but it was rusted and stubborn. I jiggled it and cursed. Finally I was able to open the door and step onto the deck, but by the time I reached the railing—I believe I was going to leap over it the way someone half my age would—she was gone. Good Lord, I thought. My throat tightened. Oh, Bette, we need you back here.

I heard steps on the deck and turned, expecting Margo, home from the grocery store—but instead it was Marse, carrying two champagne flutes and wearing a satiny taupe pants suit with an ALS pin on the lapel. She’d worn the pin, as far as I could tell, every day since she’d acquired it at a benefit we’d both attended. Mine was in a drawer. She handed me a flute, saying, “I busted out the bubbly.”

“Margo and Stuart went out for cream cheese. I couldn’t finish the cake without it. I don’t know what happened—I thought—” And then I stopped talking, because without meaning to I’d turned and faced the spot along the fence line where I’d thought I saw Bette. I knew what had happened: I’d been at the sink thinking, for no reason that I could fathom, about one afternoon in 1987 when I’d visited Bette at her old house in Coconut Grove, shortly after she’d bought it. I’d brought a painting her mother had given me to deliver, of a girl in a yellow pinafore holding a dog on her lap—the painting was of Bette, and Gloria thought Bette would treasure it, though when I handed it to her she held it at arm’s length for a moment before sliding it into a hallway closet. “Did I really look like that?” she’d said, wrinkling her nose. She’d led me to the overgrown backyard, where we stood on the creaky deck and listened to the bufo toads as they skulked among the roots of the wart ferns. The backyard was a small plot of overgrown alamandas and firecracker ferns, fertile-smelling and closed in, and even from the porch I could not see through the thick branches of a mango tree to the neighbors’ house. “I’m living in the wild,” she’d said. “I’m an aborigine.” She was the happiest I’d ever seen her, standing on that rotting porch in her lavender housedress. And in my kitchen, two years after she’d sold that house and moved across the country, my memory and my vision had crossed over, and there she had been again, in the backyard of the house where she’d grown up. “Fifty years old,” I said to Marse. “Is that even possible?”

She put an arm around me. “We will be strong,” she said. I noted that she wasn’t making fun of me. This was remarkable for my friend, in whom my sentimentality usually inspired well-meaning jabs about self-pity. “You’re going to love my gift,” she said.

Together we walked inside and into the living room, where Dennis sat in his wheelchair, facing the makeshift entertainment system we’d assembled when he could no longer stand for long periods. On the marble living room floor, scattered around Dennis’s wheelchair, were a dozen cases, some closed and some open with the CDs visible. Dennis said, “I’m almost done here.” In the eight months since he had been diagnosed, he’d lost much of his ability to enunciate. His words ran together, elongating the vowels.

“OK,” I said, looking down at the mess.

“Don’t worry, I’ll clean,” he said. He laughed his watery, thick-tongued laugh.

The doorbell rang. Marse went to get it and came back with Gloria and Grady, who in the past months had taken to knocking. This habit—knocking before entering—was something I had wanted them to do for twenty years, but only when it was inconvenient (the physical therapist, whose name was Lola, was often working with Dennis when they rang, and I wasn’t always home) did they adopt the habit. “Frances, the house looks lovely,” said Gloria as she stepped down the ramp that led from the hallway to the living room—when we’d installed them, Dennis had compared the house to an Escher drawing, saying that all the ramps went in both directions, which of course wasn’t true but seemed true: it was as if our two-story home, with all its steps down and up, had been suddenly transformed into one tilting story. We hardly used the upstairs anymore. Gloria had brought a casserole, which Marse shuttled to the kitchen. When I’d met her, Gloria had made large, colorful salads and tender pot roasts and pans full of stuffed shells. But since they’d moved to the condo, she had abandoned all culinary efforts, which I thought was her right. Still, she appeared to think it was inexcusable to arrive anywhere empty-handed, which made for creative offerings—this casserole, I guessed, had probably been in the freezer for months, since Grady’s gallbladder surgery.

Gloria was wearing a pink bouclé suit and an ALS pin like Marse’s, acquired on the same day at the same place. I thought maybe I saw my lack of a pin register in her eyes, but she was too smooth to be caught in judgment. He was my husband, after all—what did I need a pin for?

Grady passed us to greet Dennis. He bent at the waist and embraced Dennis’s shoulders, and Dennis’s right arm came up, the fingers crooked into a half-grip, and lay across his father’s back. “My boy,” said Grady, and then Dennis said something I didn’t catch, and Grady laughed. They started to collect the CD cases and put them back on their low shelf.

“What can I do?” said Gloria.

“Margo and Stuart went for cream cheese, for the cake,” I said.

“You baked your own cake?”

“I did,” I said. I hadn’t realized that I wanted one until that afternoon, so I’d run out for the ingredients before showering, but I’d forgotten the cream cheese. “It’s carrot cake. It collapsed a little, but I don’t care.”

“Did you get candles?” said Grady.

“Fifty candles?” I said. “No, I didn’t.”

“We’ve got to have candles,” he said, then left for the kitchen, touching Dennis’s back as he went.

Marse told me to take Dennis outside. “It’s your party,” she said. “Have a drink.”

But Dennis wanted to change his shirt, so I wheeled him up the ramp into the hallway, then down the hall into the guest room, where we had both taken to sleeping at night, he in a low cot and me in a single bed. (Yes, I missed having my husband in bed with me, and every night I curled up against him for an hour or so before moving to my own bed, because I knew neither of us would be comfortable all night in the tiny cot. And he needed his rest, now more than ever.) I held up three shirts for him; he pointed to the one on my far left. I knelt to help him pull his T-shirt over his head, and though I kept my hand at the cuff, it was really he who did the lifting and pulling. When it was off, he dropped it on the floor, and I kicked it toward the hamper. I handed him the fresh shirt—a white linen button-down—and knelt to help him free his hands from the sleeves and button the buttons. “You,” he said. The sound he made was much like the speech of a deaf person, but also had a tone to it that was exactly the same as it always had been. It was this similarity I clung to. “You,” he said again, softly. I sat at his feet, my hands in his lap. I could smell the soapy smell of his skin—he was still bathing himself, albeit with some help into and out of the tub, though before long he would need someone there the whole time, and surprisingly, more often than not that person would be Stuart. “You are fifty,” he said.

I smiled and brought his hand to my lips. “Isn’t it ridiculous?” I said. “It’s not what I thought it would be.”

He made a jerking gesture with his head. “Under the bed,” he said, and I crawled awkwardly in my skirt until I could reach under his cot, where there was a small box wrapped in red paper, encircled by a white ribbon.

“Can I open it?” I said, and he nodded.

At Christmas, before the wheelchair, Dennis and I had gone to Italy. We’d spent three days in Rome, two days in Venice, a week in Florence, and two days in Milan, where we’d seen Pavarotti sing in
Aida
at La Scala. (Marse’s firm had acquired tickets somehow, and she’d given them to us.) Near the end of the first act, during the “triumph” scene, I’d looked over at Dennis and was startled to find him staring straight ahead and sobbing quietly, tears rolling slowly down his cheeks. He saw me watching him and wiped his face. After another moment, he’d stopped, and we didn’t speak of it. Later that month, we’d gone to Grady and Gloria’s church to see her sing in the choir, and during one of the hymns Dennis again started to cry. We didn’t know, then, that his disease and these uncharacteristic displays were connected. Dennis was moved by
Aida
, but he wouldn’t usually be brought to tears by it. For that, we had the disease to thank. Shortly afterward, Dennis’s doctor prescribed antidepressants for a condition called
pseudobulbar affect
—which until the moment the doctor said it was a term I’d never heard.

In the guest room, when I tore open the red wrapping paper, I found a three-CD set of Pavarotti singing Radames, and it was my turn to cry. I knew why Dennis had chosen this gift. The night we’d come home from La Scala, we’d lain in bed in the hotel room discussing the opera—his voice was just starting to weaken then—and he’d said that his favorite piece was “Celeste Aida,” because it reminded him of me.

“So ‘Celeste Aida’ is for me?” I’d said to him.

He’d looked at me. “All the songs are for you,” he’d said. And on the card that came with my birthday gift, there was only one shaky line:
All the songs are for you.

T
he diagnosis had come after a series of tests, most of which were designed to rule out lesser, more treatable afflictions: ALS was left over after the MRI, the spinal tap, and the threading of Dennis’s largest leg muscles with an electrode wire. His muscles had weakened; we’d known this going in, before we were even referred to the neurologist, Dr. Auerbach. We knew he’d lost weight—his spine was more prominent, his knees were bonier. We knew he’d had trouble every so often coordinating simple movements, like taking a step or standing up from a chair. I’d thought: Marcus Beck had Parkinson’s. I can live with Parkinson’s, no problem. We’ll have a dozen years or more. We might have had only that long anyway. And I thought: if it’s MS, that’s OK, we can handle it, I can keep Dennis from becoming tired or overstressed.

But after each test, as the evidence for ALS mounted, my mind became blank. I’d never known anyone with this disease; I didn’t know anything about it. Was it genetic or acquired? Was it curable or treatable? Would it kill him, and if so, when?

We liked Dr. Auerbach. He was a very tall man with curly white hair. He had pink, vein-lined cheeks and soft hands that were small for his frame. He referred to his nurses as Miss Diane and Miss Sara, which made me think he was southern, though he didn’t speak with an accent. In his office were photographs he’d taken in Thailand, Tibet, and Vietnam, all framed with white matting and a little signature, his own name in sloppy cursive, in each bottom right-hand corner. When he gave us the prognosis—ALS moves steadily, either fast or slowly, depending on the person, but it doesn’t speed up and it doesn’t slow down, and Dennis’s case was unfortunately moving fast—he sat on the edge of his desk and put his hand on Dennis’s shoulder. He offered a referral in case we wanted a second opinion, but Dennis said no, he didn’t need a second opinion, thank you. “Dennis,” said Dr. Auerbach, “ALS attacks the muscles, the body. It usually doesn’t take from the mind or the spirit.”

In the car on the way home, I said, “I want a second opinion.”

Dennis put his hand on mine, then took it away to change lanes. “If you think it’s necessary,” he said.

“What if—” I said, but then I stopped. I didn’t doubt the diagnosis, really. What I doubted was the prognosis: two to four years at the most, Dr. Auerbach had said. This stunned me. Three years before, Bette had still lived in Miami, Margo hadn’t been married, the stilt house hadn’t been destroyed. In the doctor’s office, when this news had been delivered, Dennis had said, “We’ll shoot for five, then, won’t we, baby?” and when he turned toward me he looked almost eager, like he’d found a great big project he was itching to tackle.

I
washed my face and applied lipstick while Margo finished the frosting, and when we went outside, Marse was there with a video camera, recording us as I rolled Dennis onto the porch. “Where did you get that?” I said to her. I’m afraid I sounded a little irritable. I touched my hair. I felt about having video cameras around the way I felt about having strangers around—self-conscious and defensive.

“This?” Marse said, then without answering turned it on Margo and Stuart, who were standing together against the deck’s railing, her in his arms. It was always a little surprising to notice that she was taller than he, though only by a touch. They waved at the camera and Stuart kissed Margo’s cheek.

The food was already set out, so I wheeled Dennis into place and sat next to him. Marse sat on his other side, and Grady and Gloria sat next to her. Stuart sat beside me and passed the sweet potato casserole I’d made early that morning, before sunrise. It had been quiet and still in the kitchen. I’d put the casserole in the oven just as a sliver of sunlight had started to spread across the canal, like a door opening onto a darkened room. I loved living in the big house. I loved the thicket of bougainvillea between us and our neighbors, and the gentle slope of the lawn leading down to the canal, and the ferns along the gravel driveway that Grady and Gloria had never bothered to pave. I loved the memories—ones I had and ones I couldn’t possibly have, of what had come before us, when Grady and Gloria slept in our bedroom. I loved the telephone nook in the den and the breakfast nook in the kitchen and the sun-bleached wooden deck, where Dennis and I spent an hour almost every evening.