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.
The 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.
Grady was talking about the time he and the family had run across a corpse in Biscayne Bay. It was an old story, but Stuart had never heard it, so Grady was animated and bug-eyed as he spoke. “Mercy!” he was saying. “We thought it was just a bit of detritus, something that had snagged a piece of fabric.”
“It was clearly fabric,” said Gloria. “It had that shine of fabric in water.”