Yesterday Facebook reminded me that it was two years since Josh and I visited the Demilitarised Zone (DMZ) in Korea.
I can recall, in vivid detail, standing diagonally behind a US soldier as we looked over the motely collection of prefabricated huts that straddled the line between North and South Korea. I can still see the rough texture of the soldier’s cheek as he briefed us. His hands rested on his webbing belt. His boots were spread wide, evenly distributing his weight. Ready for action. My face crinkles with the memory of realising that our tour was very much part of the US/South Korea propaganda mill.
“Don’t smile at them, even if they wave. They’ll take pictures of you smiling and use it in their TV shows,” he said in a clipped accent.
I’m still not certain of the psychological advantage that my smile would have provided Kim Jong Un and, in any event, no one did wave at me. Inside one of the huts I resisted the urge to poke at the impassive South Korean soldier who stood dead still in a room that existed in both countries. Josh and I took selfies. I talked about James Bond movies and Josh used the film reference as an opening to return to an on-going lecture on the relative merits of Marvel versus DC Comics.
Yesterday also marked eight months exactly since Shannon and I sat in the cramped hospital “consulting room” and listened to Joshua’s diagnosis.
It wasn’t a complete diagnosis. We were told he had Adenocarcinoma and that the pathologists were tracking down the origin. It would take a few more days before the medical staff began talking about cholangiocarcinoma and a few days after that before I Googled the term (it means biliary duct cancer, by the way).
I expected that the instant that we were told Josh was dying would be frozen in perfect detail indefinitely. I imagined it as a metaphorical lost tooth: a moment of exquisite pain that I could go back to again and again. I could worry at it; explore its edges and its magnitude.
The only thing I remember in any detail, though, was that the oncologist had no tissues. I had to squeeze past her to retrieve a paper towel from a dispenser. I can feel the sandpaper-scrub of its coarse grey surface against my lower eyelids. I replay the detail of one unbleached fibre that stood proud of the towel’s surface. The rest of the conversation is gone. I remember the outcome – bad – but nothing about the words or the sounds or even the face of the doctor.
For months, I headed back to that room night after night.
I knew that if I could only remember it, there was a detail I’d overlooked: a Dan Brown-ish key that would unlock the code for cure and my happily-ever-after. Each night I berated myself afresh for forgetting such an important moment.
In reality though it hasn’t been forgotten. The memory was probably never made. In that moment of extreme stress, the higher order functions of my brain will have shut down. Energy was, most likely, being diverted to my large muscle groups to allow me to fight or to flight. I would have lost peripheral vision and been unable to pick up the full spectrum of sounds available. All of this is established science. It’s what brains do when the situation is dire. I’ve spent hours, days, years explaining this peculiarity to clients as they work on reducing their stress.
And, of course, knowing all of this did nothing to stop me heading back.
And back. And back.
And then Josh didn’t die.
He kept on not dying until it became Not Dying.
For days and then weeks and now months he’s kept on Not Dying. There’s been no miracle. There’s still not much chance of cure but day after day he keeps on with this business of Not Dying.
And the thing with Not Dying is that, after a while, it begins to look a lot like living. If you are planning to live you have to – YOU HAVE TO – stop visiting the room with no tissues. You have to go to the DMZ or the beach or the garden (or even to school if you’re a nerd like Josh). On Friday we head off (courtesy of Reach for a Dream) to do some Not Dying at Comic Con in New York.
It turns out that the difference between not dying and Not Dying, is the difference between remembering and creating memories.
We have some Not Dying still to do.