|© 2009 Mari Kurisato|
I don't want to be the cancer guy. I want to be the sci-fi guy. ... One of the things I realized almost out of the gate, literally the second day I was in the hospital, was I'm not going to get very much that's good out of this experience, maybe get to keep my life for a while, so I may as well make something of it that will help other people.In all of my recent reflecting on 2013, I neglected to mention one of the most powerful and educational bodies of writing that I read through the year: Jay Lake's blog posts on his experience with terminal cancer. (An index to early entries is here. See also: "A brief user’s guide to this blog".)
While Jay refers to these posts as "cancer blogging", which is entirely accurate, at some point I began to think of them by another name, conflating them with the title of a book by Audre Lorde: The Cancer Journals. The word journal also evokes the word journey, and that's what it feels to me Jay has given us: a journey. Not his journey, which is his alone, shared with closest friends and family, beyond the realm of language only — but the kind of journey narrative provides, and particularly, in this case, serial narrative. Another title might be morbidly appropriate, from a translation of Céline: Death on the Installment Plan.
The form is powerful because not only does it capture the day-to-day ups, downs, rollovers, bang-ups, jumping jacks, high-fives, and collapses of this experience, but it provides them to us in pieces. The story isn't finished. Further, while before the terminal diagnosis there was a desire for it to be finished — a desire for the cancer to go away — now the most likely ending is the one anyone who cares about Jay dreads. Each new entry to the cancer journals, no matter how painful, is a statement of life and the ability to keep sending words out to the world.
That's the personal part. But to read Jay's cancer journals as simply and solely a personal chronicle is a mistake. Given the state of the American health care bureaucracy and all the laws governing it, no chronicle of encounters with that bureaucracy can be solely personal. In sickness, the personal is very much political. And not only political: informational. And for anyone with even a minor tendency toward reflection, metaphysical.
It is for exactly these reasons that Jay's cancer writings have been among the most important words I've read over the past few years. I've had very little experience with cancer, myself — some friends with breast cancer, a grandfather who died of lung cancer when I was a child — and little experience with the absurd, immoral bureaucracy of the U.S. health system. (My closest experiences with that were when my father had a couple of heart attacks and congestive heart failure some years ago. Self-employed, he was barely insured. He died in debt to hospitals he'd stopped going to because he was angry and embarrassed at the bills. What I saw in his face and heard in his voice in that last year was just that he'd given up.)
As I’ve said on multiple occasions, my own story, the tale of my illness, death and dying, is the last story I do have to tell. My happinesses are specific to my own life. My sufferings are emblematic of so many other lives. That’s not ego talking. That’s the experience of blogging my cancer journey these past five and half years, and receiving countless amounts of email and comments and in-person feedback.
When I see a movie, or eat a good meal, or have a nice evening with a friend, that’s not really news. That’s just me living my life.
But as I collide with the limits of my disease and my death, and the financial, legal and medical processes around it, that’s news. It’s information. When I write about it, I put a voice to something many other people experience in silence, and I bear witness to something many other people have not yet encountered.
—"Talking About Life"
Thus, I had little knowledge of the routines of cancer treatment, the medications, the expenses. That's what Jay's writings have provided us with. What does it feel like to go through this day after day after day. What does it feel like to have your life defined by the disease that will kill you? What does it do to you to be in remission and then not? To be relatively young and to know how you will, in all likelihood, die?
His cancer journals remind me of Paul Monette's AIDS writings: Borrowed Time and Last Watch of the Night. In Last Watch, Monette wrote about people who complained that his writings were "too personal". Honestly, embarrasingly, that was my initial reaction to Jay's posts. I couldn't read them for a bit, because I wanted to be protected, I wanted to be outside and ignorant, I didn't want to have to look and look and look. I wanted escape. But then I remembered Monette. I remembered how much of my view of the world — of life, of death — was shaped by reading those books when I was a teenager, of grappling with personal experiences outside my own.
Too personal, yes. Necessarily so.
I haven't seen Jay in years — the last time was, I think, probably the World Fantasy Awards in 2005. We're Facebook friends, but haven't really kept in touch. He was so prolific for a while that I was unable to keep up with his fiction, though I wrote about it occasionally. (My favorite is an early post hereabouts, on Jay's very short story "The Redundant Order of the Night", not because I think there's anything even remotely worthwhile in the post, but because Jay pointed out at the time that my post was twice the length of the story itself. I don't know quite why, but that's always amused me.) We have some of the same friends, travel in some of the same circles.
Through his cancer writings, though, I have come to care very much about what happens with Jay on a day to day basis. At first, I couldn't read his cancer writings. It felt too voyeuristic. I'm a stoic New Englander — our idea of a good death is to go out back behind the shed and shoot yourself while everybody else is asleep, then let the buzzards pick you clean. No fuss, no bother. Yet it is exactly that sort of attitude toward death and dying that helps sustain our hideous health care system, because we hide away our worst troubles, our day-to-day pains and moods, we keep it all so personal, we disappear bit by bit until we die. The ghastly horrors of a profit-driven health system get hidden away.
We could read a hundred different pundits pronouncing on the good, bad, and ugly of Obamacare; we could read study after study of what is efficient or inefficient in American healthcare; but without experiencing it ourselves, will we know what it means to have this system, here and now, as one of the most important systems in your life? It is the testimony of Jay's writing that provides that for us.
More than giving us a vivid window into U.S. healthcare, Jay's writings bring us toward an understanding of illness, death, and life that is rare in much of contemporary American culture. A lot of this comes from how rational and matter-of-fact his tone remains. Partly, that's a result of the circumstances of writing — lacking energy and rushed for time, he has to write what's most important, what's most at the front of his mind. All his years of writing have provided him with the skills to be able to do that, to write clearly in a rush. I think it probably helps, too, that Jay is a science fiction writer, because most SF writers, even if they don't have the hard science mindset of, say, Larry Niven, are interested in the scientific approach to the world, and share, to some extent at least, a scientific mindset that tends to shy away from sentimentality and flights of lyrical metaphor. This is what it is, Jay's entries seem to say to us. Take a good, hard look. Why shy away? Why hide? This is life and this is death. Learn. Know!
Jay is determined to make as much of his experience as he can into a contribution to human knowledge. The knowledge of the everyday life of a terminal cancer patient, but more than that: knowledge of the disease. Through a crowdfunded project, he had his genome mapped, and has now made it "open source" — likely the first such endeavor in history. He's joined experimental studies at the National Institute of Health, and progress is being made. His life will not have gone to waste, nor will his experience of the disease go to waste.
This is more than I intended to write. When I began this post, I mostly just wanted to say: Go read Jay's cancer writings. They're important, more important than anything you'll read here.
As I wrote this, though, I discovered another purpose. I want Jay to know, while he can, that all of this matters. That he has wrenched something good, something useful from the ghastly abyss that is this experience. Part of me waits with terror for the day when Jay cannot write another post. If that is my terror, I can barely imagine the terror chasing him. I could choose not to read his posts, I could choose to turn away, to eulogize him on his death, to move on. I don't choose that. I want to know. I want to have what his writings give me: some tiny stake in his fate.
Broadly, his fate is our own. We are human and we are alive. Against all odds and crowded with suffering that is occasionally alleviated by joy. We are human. We are alive.
Now. Here. Now.
As for the substance of yesterday, while I feel pretty darned accomplished, I also recognize that all of these victories are fundamentally futile. The CT results were frankly quite depressing. We’re fighting rearguard actions in a war the outcome of which was confirmed last spring. This does not stop me from grabbing every chance I can, wringing what I may from each passing day. But last night when I was in bed shivering under extra blankets and feeling logy and strange, I kept wondering if all this was worth it.
So far the answer is still yes.
—"The Adventures of Self-Directed Patient Man"