I’m in the doctor’s office and he tells me I have ALS. Light leaves the room. And air. And sound. And time. I sit on the chair opposite but I am far away. Deep inside. Looking up through the tunnel of myself, as he speaks those words. “Three to four years to live.” I don’t hear him. Is this my life? Is he talking about me? I leave the room, the tunnel all around me, and stand before my wife[, Ruth,] in the waiting room. The color leaves her face. Her father is beside her. They come into the room and he tells them the same thing. I don’t hear him. Ruth starts to cry. Within ten minutes we are out on the street. Not knowing what to do, we do what we planned to do before. We go to lunch. Ruth’s dad will meet us after. We walk through the streets like the survivors of some vast impact. Pale, powdered ghosts. We reach the restaurant. Dunne and Crescenzi on South Frederick Street. Our favorite. I stand into a doorway outside and call my parents. It is the worst phone call of my life. I tell them everything, fast, hearing the panic in my voice. Later, I’ll thank them for coming when they arrive at our house, and they’ll look at me as if I’m insane and I’ll become aware, for the first time, that nothing is the same. We enter the restaurant. Sit down like everyone else. We sit there, not knowing what to do, what to say. The waiter comes over and starts to speak to me. Ruth starts to cry. The place is under water and I can’t hear what he’s saying. Ruth is pregnant with our third child.
We are orphans of the universe. Our species is defined by asking questions, out into the dark, without anyone to guide us except one another.
Time is a trick. From an outside vantage point we live a certain length of time, one that we measure in minutes, hours and seconds, birthdays and anniversaries. But we don’t live at a vantage point to ourselves: we are immersed. We live in fits and starts and jumps, like dreams. And the lives we inhabit are measured in moments, irrespective of time. How we live is strange and uncertain and not written on any map.
In a movie, when a doctor tells a patient they have a certain time left to live, it sparks a voyage of discovery, a quest for authenticity and redemption. In Joe Versus the Volcano, one of my favorites, Joe Banks, when told he has a “brain cloud,” goes outside and hugs a large dog, then goes on to do what he’s wanted to be doing for years: he lives his life.
I think of him often in those first days after. How that moment I had always laughed at had become my life. What now? What do I do? And it comes to me very quickly. I suddenly know what is different between me and Joe Banks, between all the stories and my life. I am happy. I am exactly where I want to be, with exactly who I want to be with. It’s quite a realization to discover beyond doubt that you’re happy. And death had brought me there.
Death. On my shoulder. In my head. In the garden. At the door of my office. In every glance with my wife. My new companion: the end of my life.
We are living in North Cottage[, Ireland], with our two little boys, Jack and Raife. We moved here so we could afford to live the life we wanted to live. I was working on my films, Ruth was writing her first novel and the boys had a garden ten times the size of the one at our previous house. We had a plan. And it was working. We were happy.
But that was before. This is after. Never before had I felt that split, but now a fault line has opened between our past and present, and there is no going back. Death, which before had lived on some distant horizon, is now in our living room. We are lost, within the familiar surroundings of our lives. Ruth and I cry a lot, at night, in bed.
Human time is not measured by clocks and watches. Time slows down, time speeds up and the mystery of how we live is ever present, despite our will for it to be otherwise. Our lives are not the legacy we leave behind, or the value of the work we do. Our lives happened inbetween the deeds and ideas that define us. Each of us feels it, the mystery, the strangeness of life on earth. Of life and death. We feel it when we travel, we feel it when we stay at home. We feel it when a loved one dies or when a loved one is born. I’m sure we all crave more certainty than we have but that is not human life. That is the ticking of the clock.
When you are told you will die within a certain period, time slows down. Life becomes dominated by the last time. Is this the last time I will read a book to one of my boys? If not the last, how many more? How many? Everything is heightened. I stand outside in the darkness and watch my son playing in the window of the cottage. I stand until the cold is in my bones and wonder, Is this the last time that I’ll stand? I’m in my life and outside it, in the moment and conscious of the significance of every moment.
It’s lucky. In this heightened state, experience is burned into my memory. I’m running after Raife and I’m thinking, Is this the last time I’ll be running? So I speed up. I’m running with a limp, and so running full tilt becomes a series of long hops and strides. But I’m running, across the grass, after my son, who is laughing uncontrollably, in the half-fright ecstasy of pursuit. And I’m remembering it. Fear of the last time is recording every second. Which is lucky, because it is the last time. And when you lose something central in your life it’s important to have a memory of it, so you don’t feel insane, so the pain you feel has a corresponding shape, something that says definitively, “That is real.” Then, happy or sad about it, I have that for ever.