He was an ideal patient, Joe tells me. Meticulous, intent on doing everything right. And he was curious, wanting to understand why certain treatments were being prescribed and asking all the right questions. Jay wasn’t as willfully in the dark about his situation as I’d thought. “But he never asked if he was going to die,” Joe says.
As I listen, the tears come. Joe and Mark explain that many patients, particularly young ones, avoid discussing the possibility of death.
“People want hope and direction,” says Joe, his glass of wine untouched. “They don’t want to talk about dying. I always quote Samuel Johnson: ‘The natural flights of the human mind are not from pleasure to pleasure, but from hope to hope.’”
I can tell from Mark’s expression that he knows how much I am struggling.
“Listen, Katie,” he says, “there are different kinds of hope. One is the hope that the cancer can be cured. If it can’t, there is the hope that the disease can be managed. And finally, there is the hope for comfort and grace.”
Mark tells me he gave Jay many opportunities to talk. He sat in his hospital room as Jay recounted his most recent Civil War reenactment, describing the mist coming over the valley, how the soldiers had been scattered across the berm behind the trees. It makes me smile. That was so Jay, going into every detail about a fight to the death that had taken place more than a hundred years before. Just as he was facing his own.
Years later, I discovered a legal pad on which he had made a list of all our assets, including our house in Millbrook （how much we paid for capital improvements highlighted in yellow）， our minivan, his beloved Jeep, our bank accounts, IRAs, life insurance policy. In the right-hand corner was the date: October 30th, 1997, three months before he died. He knew.
THERE ARE MANY things I would do differently if I had the chance. Being more honest with Jay is the first one. I thought I was protecting him. And his surgeon at New York Hospital was all too willing to follow my lead. I’d told him to be careful when describing to Jay how much the cancer had spread. So he talked about seeing “shadows” on the X-rays rather than using the word tumors. It’s one reason I didn’t want Jay treated at Sloan Kettering, which has a reputation for being cold and clinical and sparing no details. I felt like I could co-opt the doctors more easily at New York Hospital and manage Jay’s information flow.
Why was I so afraid to talk to Jay about the inevitable? Why weren’t we straight with each other and admit that this was not solvable, not fixable, and that our storybook life together would end after just a few chapters? I remember thinking I did not want to destroy the time Jay had left by admitting defeat, leaving him with little choice but to wait for death to take him. But in hindsight, I think I was a coward.
There’s no playbook for how to handle the devastating things we all, sooner or later, will have to face. Death may come suddenly, out of nowhere. My friend Diane lost her husband, Mark, in a car accident one summer morning when they were on their way back to the city from Long Island. Her life changed in an instant. Other people’s loved ones simply fade away. Both bring their own unbearable pain. However it happens, you do the best you can.
I wish we had sought out the help of a minister, a social worker, anyone. Perhaps then we could have said the things we wanted to say, needed to say, but were too afraid to say.
John Kelly, who officiated our wedding, wrote to us the summer before Jay died:
Don’t let the fear of your vulnerability result in the building of a wall that blocks your talking to each other. Don’t stay behind a wall trying “to be strong for the other.” Rather begin from your mutual weakness, your vulnerability, so that together you can show the strength that can be found in the stories of your relationship.
It’s too late for us. But consider this my gift to you or anyone you know facing a terminal illness.
I did everything I could to keep Jay alive. Looking back, I wish I had done a better job helping him die.
I GOT SO ANGRY with people when Jay was sick. I felt like they couldn’t do anything right. If they stayed away, I resented it. If they got too close, it only strengthened my resolve to circle the wagons. I was furious that the church across the street from us in Millbrook, where Carrie was baptized, never sent over a note or a casserole—never even called to see if we needed anything. Not very Christian of them, I would silently seethe. （I was later told that the congregation didn’t want to intrude on our privacy, especially since I was a public figure.） I think I often defaulted to anger because it was easier to feel and express than pain or fear.