We witnessed an altogether unexpected transformation. He threw himself into his work as Rotary district governor, whose term of office had just started. He absorbed himself so totally that he changed his e-mail signature from “Atmaram Gawande, M.D.” to “Atmaram Gawande, D.G.” Somehow, instead of holding on to the lifelong identity that was slipping away from him, he managed to redefine it. He moved his line in the sand. This is what it means to have autonomy—you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.
The job of district governor meant spending the year developing the community service work of all the Rotary Clubs in the region. So my father set a goal of speaking at the meetings of each of his district’s fifty-nine clubs—twice—and took to the road with my mother. Over the next several months, they crisscrossed a district ten thousand square miles in size. He always did the driving—he could still do that without trouble. They liked to stop at Wendy’s for the chicken sandwiches. And he tried to meet as many of the district’s thirty-seven hundred Rotarians as he could.
By the following spring, he was completing his second circuit through the district. But the weakness in his left arm had progressed. He couldn’t lift it above sixty degrees. His right hand was losing strength, too. And he was starting to have trouble walking. Up until this point, he’d managed to persist with playing tennis but now, to his great dismay, he had to give it up.
“There’s a heaviness in my legs,” he said. “I’m afraid, Atul.”
He and my mother came to visit in Boston. On a Saturday night, the three of us sat in the living room, my mother next to him on a couch and me across from them. I distinctly remember the feeling that a crisis was creeping up on us. He was becoming quadriplegic.
“Is it time for surgery?” I asked him.
“I don’t know,” he said. It was time, I realized, for our own hard conversation.
“I’m worried,” I said. I recalled the list of questions Susan Block, the palliative medicine expert, had said mattered most and posed them to my father one by one. I asked him what his understanding was of what was happening to him.
He understood what I understood. He was becoming paralyzed, he said.
What were his fears if that should happen, I asked?
He said he feared that he would become a burden on my mother and that he wouldn’t be able to take care of himself anymore. He couldn’t fathom what his life would become. My mother, tearing, said she would be there for him. She would be happy to take care of him. Already the shift had started. He was having her do more and more of the driving, and she arranged his medical appointments now.
What were his goals if his condition worsened, I asked?
He thought on this for a moment. He wanted to finish his Rotary responsibilities, he decided—he would be finishing his term in mid-June. And he wanted to make sure his college and family in India were going to be all right. He wanted to visit them if he could.
I asked him what trade-offs he was willing to make and not willing to make to try to stop what was happening to him. He wasn’t sure what I meant. I told him about Susan Block’s father, who’d also had a spinal cord tumor. He’d said that if he could still watch football on television and eat chocolate ice cream, that would be good enough for him.
My dad didn’t think that would be good enough for him at all. Being with people and interacting with them was what he cared about most, he said. I tried to understand—so even paralysis would be tolerable as long as he could enjoy people’s company?
“No,” he said. He couldn’t accept a life of complete physical paralysis, of needing total care. He wanted to be capable of not only being with people but also still being in charge of his world and life.
His advancing quadriplegia threatened to take that away soon. It would mean twenty-four-hour nursing care, then a ventilator and a feeding tube. He didn’t sound like he wanted that, I said.
“Never,” he said. “Let me die instead.”
Those questions were among the hardest I’d asked in my life. I posed them with great trepidation, fearing, well, I don’t know what—anger from my father or mother, or depression, or the sense that just by raising such questions I was letting them down. But what we felt afterward was relief. We felt clarity.
Maybe his answers meant that it was time to talk to Benzel about surgery, again, I said. My father softly agreed.
He told Benzel that he was ready for the spinal surgery. He was more afraid now of what the tumor was doing to him than what an operation might do to him. He scheduled the surgery for two months later, after his term of office as district governor ended. By then, his walking had become unsteady. He was having falls and trouble getting up from sitting.