what’s the difference? If I die in two years’ time, what will I do between now and then which I don’t want to do now? The main reason for living longer now is for the sake of my family and my wife. And this is not rationalist bravado entirely. I’ve had a wonderful life. Yes, I’ve done a lot of things I shouldn’t have done. But you know, I’ve had a full, complete life, and there’s nothing more I can do to complete it. Dying when you’re younger is obviously a totally different situation. Or losing a child. I mean, that’s beyond words.

I see the future as something that could come crashing down very fast. Let me put it slightly by way of a comparison. Normal people, and I use the term very deliberately, by this not otherwise able situation - I'm disabled. I'm abnormal. Normal people dont think very much about the medium term future. They think only about the present, which is constantly changing for them or the very far future, which is just an abstraction. For me, its the other way around, my present never changes. So I dont really think about. But the medium term involves my death so I'm quite conscious of what is going to happen to me in about a year, maybe two years, who knows, whereas no one else I know thinks like that.

I just thought right away that I wanted to work. ... This is a good job. It's been a good job. Work is the most effective drug there can possibly be. ... I'm on the periphery of a lot of despair, of course. ... You'd have to be stupid not to be. I have my moments when I'm not too thrilled about this whole deal. But at the same time, the songs have never come like this, so I'd have to feel more gratitude than anything else. I'm probably in the intensest creative period of my life.

This is obviously not how I wanted things to turn out, but my wife and I have no regrets; we did everything I could to maximize my odds. And we want to thank everyone who has so graciously helped us. The really weird part of all this is that I'm not depressed. I'm not in denial (I assure you, I am fully aware of what is going to happen), nor am I whistling in the dark, but after having felt crappy and sick for 11 months, to finally be fully healthy again is so exhilarating that it's a wonderful emotional buoy. So I am going to enjoy each day very fully, and play hard with my kids until I can't.

None of this was supposed to happen. At 38, I wasn’t supposed to lie on my back in the E.R. on a late December morning and be told by a teary radiation oncology resident that the pain I’d been having for two months — that I’d been assured was from having a weak core after months of chemo — was actually from a tumor that had devoured my L2 vertebra. John wasn’t supposed to have to hold me up on the toilet. Put my pants on for me. Do Christmas Eve for the children without me. I’m not supposed to be thinking about where he will sit and hold my hand as I take my last breath.

Downstairs, the boys gaze at a screen on the old futon in the playroom. We will figure out what to do about them soon enough. They probably already know what’s up and are waiting for us to figure out how to say it. Their very existence is the one dark piece I cannot get right within all this. I can let go of a lot of things: plans, friends, career goals, places in the world I want to see, maybe even the love of my life. But I cannot figure out how to let go of mothering them.

So maybe I don’t try to figure it out. Maybe I just aim to get the couch right: strong bones, high-quality leather, something earthy and animal and real. A surface that knows something of what it was to be alive, that warms to our touch and cools in our absence. Also: an expansive bench that fits all of us. Something that will hold us through everything that lies ahead — the loving, collapsing and nuzzling. The dying, the grieving.