Stiltsville: A Novel - By Susanna Daniel Page 0,111

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