Eat. Sleep. Walk. Smile. Die.

5 Oct

There will be more blooms this spring.

They will open around nine in the evening and then close at the first gray light of dawn.

I’ll sit out there with a glass of red wine and the lights out.

When I tell people about the blooms, about how they open around nine and close before sunrise and only do this for one night of the year, they always ask, “Is that all?”

Yes. That’s all.

-Charles Bowden, The Bone Garden of Desire

The key term in Glioblastoma Multiforme (GBM) is multiforme. (Please do bare with me through science of this.) Multiforme means that there are multiple forms of cancerous cells, glioblastoma means that these forms are exceedingly malignant. Consequently, GBM always evolves towards:

(a) its most malignant form—which is also:

(b) the form that makes it most difficult to destroy.

And so you already see the paradox: by treating GBM—if you choose to treat it—you are, by definition, creating a stronger more resistant mutation with each attempt. Craniotomies. Radiation. Temadol beyond the bounds of the clinic’s established protocol. Experimental virus therapy. Green tea, fresh dandelion, a poisonous cocktail of intravenous Carboplatin mixed with the maximum dose of Tamoxifen—the shock-and-awe that almost wipes GBM out one day, in reality only creates an increasingly awesome mutation of it the next. On and on until you’re left with something indestructible growing inside your brain, until one day there is no space left inside your brain for it to grow.

The alternative? Well, researchers have witnessed the mass of an untreated GBM tumour double in a week, then double again, and again and again until—well, GBM very seldom fails. And there’s something to be said on GBM’s behalf for that. It is efficient. We are a culture that respects efficiency above all else. Such is the caliber of GBM’s efficiency, in fact, that it is scientifically quantified by the prognosis: “six months (give or take).”

“Give or take,” of course, because “everybody is different.”

Cancer can receive no higher compliment than “six months give or take.” And that will be the last it gets from us today.

~

I would see my friend about every second week. That’s what we’d try for, at least. He lived down the street from me in Kensington and we’d meet at a pub down another street called The Kensington Pub. There were fake Irish places and lounges with fancy names up and down other streets, but back then me and my friend liked the things which could to be as straightforward as possible.

So we did not believe in small talk either. We’d shake hands, assume our usual stools along the bar, take a deep breath and set to drinking ourselves near blind. This was our routine. It was straightforward. It filled me with immense joy. If I could be anywhere in the world right now, it would be on my way to the Kensington Pub to meet my friend for a beer.

What I found most comforting about those evenings was the way he always asked, “How’s your Mom?” when I’d first arrive.

I’d tell him how things were changing, how it was becoming less possible to pretend they weren’t. We’d shake our heads earnestly, like old men. Then I’d ask, “How is she?” And he told me how his fiancée, in her mid-twenties, was kicking the crap out of ovarian cancer. We’d nod our heads in understanding. That this was how things must work. Our updates never took more than a minute—they weren’t token, mind you, because everything was communicated in that minute. We wait quietly for the collars of the Guinness to settle properly, then launched into Stampeders Football and American Literature and India. All that is worth talking about in life.

And in the last year of those conversations, I realized that except for the American author Richard Ford, neither of us believed in anything that even remotely approached a “hero.” And that was the one sad part about our routine. Because me and Ian once based our lives around heroes. And without them, it seemed kind of pointless.

~

I’ve read a hundred times—I’ve been told at least a hundred times—that a life does not come down to, of all things, one’s “battle with cancer.” And you know what? It doesn’t and it does.

The prognosis for this kind of thing, as I said, is six months give or take. She went 36, and if you’d been around for those 36, you’ll know what I mean when I say that they say “everybody’s different.” And so you’ll also know what I mean when I say that I don’t mean that in the way that they think I do.

And if you don’t know what any of that means, don’t worry. Because this is what you should know, this is what was taught to me by her in those 36 months. It’s what I’d like you to know because I know you’ve got your own indestructible things to deal with, and every little trick helps.

It works this way: GBM, as I know I’ve mentioned, very seldom fails. The key term being seldom. Because…there are times. We threw everything but the kitchen sink at GBM, and at that moment when we tried to rip the sink from the wall, it hit me that she had been on another tack all along.

~

Over those last 36 months, her fridge was a jungle of cooking jammed inside different shapes of tupperware. Not cooking like at restaurants. I mean cooking. Packed plastic and glass and space age containers, which became immensely engrossing to me, because I am voyeuristic, and these were windows into the way other people lived. People with means and people with less; sloppy people and neat people and busy people and people with time. People emptied their gardens into these containers, they transferred the insides of humongous tins from Costco, they poured in all they knew how to do, and then they mixed in fresh garlic. Pea soup, cabbage rolls, quinoa salads with pine nuts, mulligatawny soup, painf au chocolat (delivered one morning by express post from Montreal), stilton cheese cake, cheese biscuits from the Georgia that isn’t the Georgia where Atlanta is but the Georgia where people live to be 125, grape jello, borscht, giant bricks of banana bread, ice cream pails jammed with curry, fancy Pyrex packed with frozen macaroni lasagna, four variations of spaghetti sauce, five alarm chili (which I once mistook for the fourth spaghetti sauce), half a dozen kinds of casserole, a 20-pound turkey cooked and stuffed—and too much chocolate to count (because like the magnet on the front of her fridge says: “the only thing better than a friend is a friend with chocolate”).

The fridge, even though it was never big enough, became the equalizing force of so many private lives. At any given moment it held every known manner of food in existence, all bound by a single trait: grace. It dripped and drizzled with grace. It was basted in grace. And so there wasn’t one bite of one dish that didn’t make my tongue tingle. I’ve eaten in restaurants around the world, and pilfering from her fridge was the first time I knew that a tongue could tingle. So I like the term cooking better than cuisine. And I think that has to do with the cook.

~

The famous paradox of being human is that we are both living and dying at exactly the same time; every day that we live, we are implicitly one day nearer our eventual death.

The paradox of treating GBM, as I’ve said, is that by trying to kill it, you implicitly turn

GBM into new, mightier and more diffuse forms of itself until these forms are such that they cannot be destroyed with any treatment but the inevitable final one.

It is these two paradoxes that she so shamelessly hijacked. Because it seemed to her that if GBM was going to mutate into another form—many other forms—then so she would let her own irrepressible qualities run wild into even more forms than that. And if it came down to her forms and unfaltering four-dimensional systems of distribution versus its, well, then she knew she’d have the sucker licked. That was the first trick, but now I’m suddenly nostalgic about how she tackled the second. Because the great marvel of watching her die—when it became defined to her as “dying” instead of “living”—was that I don’t think I ever saw such a consistent and fervent exhibition of life. By that, I mean the brazen savoring of every single moment of living in spite of a future that did not exist. I know that’s difficult to grasp, I’ll sum it up with three noteworthy things I saw because in these lie the mythology of what she has become.

The first:

When the fridge at her house was filled with more cooking than it could hold, I tried to sleep in a chair on either the sixth or eighth or tenth floor of the Foothills hospital (they always put her on even numbered floors). 3:45 in the morning—I note the time carefully. The hospital is draped in snow. The floor—let’s call it the eighth—is asleep, and all of a sudden she shoots up from bed.

All week she’s been given a bunch of scores like “karnofsky scores” and miscellaneous other neurological scores. Not to mention the MRI score, and if you don’t trust a picture of the inside of the brain, then there are the seizures which shake her body violently or else the fact that she can neither walk nor talk anymore. She’s been shifted to the charge of the chief neurologist, who hasn’t yet learned what the chief neuro-oncologist had learned; so in that morning comes a team, as they have come the morning before and the morning before that—a bleary eyed team with residents and nurses—discussing her case in a way that indicates she is not in the room. And at those moments when they do happen to address her (because, actually, she is in the room), it is in terms of all the tests you have flunked, Miss; their method of address is how one might address a plant that is dying but wouldn’t comprehend it.

And so 3:45. The eighth floor. She shoots up from bed with this—this pissed off look on her face. And I’m amused. Because I’ve never seen anyone who has never looked even mildly pissed about anything in her life, look as suddenly peeved as this mild-mannered middle-aged librarian now looks.

“Wanna go for a walk?” I ask. (Because levity is what me and her would do.) Like the third or fourth or fifth night in that chair.

And fuck.

It takes her all of six seconds to groan and move these legs, which have stopped working, over the left edge of the bed. She drops them into a pair of colourful sandals on the floor. She uses my arm to pull herself up (after glaring impatiently as I untwist out of the chair). She loses her balance for a half second as the room spins—like even the stupid walls wants her to get back down in bed. And she turns her glare from me to each of these stupid walls, and that breaks into the smile, which is the smile of primetime Nike commercials, and she just simply starts walking. We get to the door, and I flash a look like not bad, but maybe you should go back to the bed and maybe get some

But she’s already out the door.

Then halfway down the hall.

And I, who have supposedly long since learned not to be surprised by anything she would prove to me, am straining to catch up.

So OK then, that looks like your room, I point when we’ve completed a lap of the floor.

And the grin creeps further up her cheek, cracking the cleft of drool that has dried there over the night. You see, now she’s making me feel like a dork. Because she doesn’t even acknowledge that there is a room, that she has any tie to this place whatsoever. She barrels past it. Then past it again ten minutes later. Then twelve minutes later. Then fifteen minutes later. Lap after lap after lap. Until early in the morning when that chief neurologist (and her team of residents) arrive—jaws on the floor, this breathless lady staggering towards them—with this pyscho grin which is a grin that I would now like to call a screw you grin, but in truth is more like a send me home so I can work on my potted plants and walk in my neighbourhood grin. And the hospice arrangements are cancelled, and she’s out there on good old Capilano Cres in the snow doing laps. Neighbours’ heads peering out through curtains, faces brightening in relief—because there’s that bloody walking lady, and the world makes sense to them for a few minutes. Because she’s walking and smiling, and nothing is as straightforward and reliable as that smile. Which is not really a Nike smile or a send-me-home smile so much as the smile that could never be helped.

The second:

This is more of a general note about coming to understand how she had spent a life cultivating a proficiency at seeing.

She liked it best when she wasn’t the centre of attention, when she could sit back and watch her friends do what they did. When Birgit would bring news—and, yah, she liked the news, but it was the way Birgit would bring news—like Shaq going over top all New Jersey, ripping the rim from the backboard then heaving it in the river. When Bill and Leona would break into their exchanges, the ones that Albee so shamelessly steals and inserts into the part of the play that sends mouthfuls of tea out through all our noses, making you wonder why you’d even bother with the play. When Sandy and Bobby and Terry and Mike elevate the feng shui of the living room by simply sitting—four perfect juxtaposing postures and facial expressions and mannerisms who, incidentally, would have to be the last four people you’d want to leave off your crew when taking a yacht into uncertain waters. And then Jenny, who is timing, would tip toe through the door and bring an aura of peace over the room. And Berryl, to whom timing is a sixth sense, would break through like a tornado and bring an aura of peace over the room. And Bev would bring her daughter Justice over, who would bring the peace crashing to the floor—because who wants peace all the time, right? And Sheryl and Gilles would use the eyes in the back of their head to watch Luke and Dez, who somehow never knocked anything over as they trampled on the peace which Justice had laid waste to on the floor. And John’s easy movements would bring it back to life. While Barb would be on the speakerphone from Brisbane. And Matt’s brought beer! And the Dvorkins have flowers. And Charlene and Bunny and Dianne and Johanna and Susan—the book club—would smash down the door and kidnap her for the afternoon. And all those people who lived too far away to drop by, but said, “anything…anything we can do, just …anything…” before their voices would trail off. And Nick and Irene. Who would never be anything—ever—than Nick and Irene because that would keep you going for the week when nothing else would.

Her eyes lit up at the ways of these people. These remarkable people. (Her knack was that she only attracted remarkable people.) She’d shake her head in disbelief, what would such remarkable people be doing in MY living room?

The third:

A quick one. After GBM has been stable for a year, she is told that it is growing out of control again, that her time is now very limited. She tears up for maybe 90 seconds, has a stiff chai at her favourite coffee house (because brandy would interfere with the anti-seizure meds), she sighs “Oh God” once, then signs up for Level I Spanish classes.

This is human temerity.

This is how it is possible to live and die at the same time. And not really die.

~

The term grace is one of those terms that confound me. It’s been expropriated to mean something that I’ve never quite understood. It seems, at once, to be inadequate yet totally adequate.

~

She was the type of person who is a good listener. She learned it from her mother, and in turn has taught her daughter, who has since taken listening to yet another level. Too many people brag about being that person, the one who is a good listener whom others come to with problems. Yet nobody who ever makes that claim is anybody I would ever take a problem to. She never claimed anything, of course, only waited for them to come. Then listened. Her eyes would blink between states of absolute wonder and absolute knowing. And it didn’t matter if your life had just fallen apart, or if the schmuck son was going on about Butch Cassidy and a trip to Bolivia. Your story mattered. She’d probe. She’d understand. She made you feel like the most important person on the face of the earth because, if only for a cup of tea or chat on the phone, you were understood. She never attempted to solve anything. She was empathy, and empathy was the point. So consequently, she brought out the best in anyone who met her. If you liked yourself even a little bit, you wanted to hang out with the lady.

It annoyed me—someone who collects stories for a living—how effortlessly she could get to the bottom of yours with no apparent outward effort at all. And unless you’ve ever really tried to do this for yourself—like really do it—then you’ll never truly appreciate the outstanding effort something like this takes. To watch anyone who has perfected anything—to read Fitzgerald or invent Microsoft or discover America or watch Gretzky in his prime or even to see an old lady from the old country making goulash—it seems effortless. Virtuosity is the art and science of making the extraordinary appear ordinary. Her capacity was to live beyond what is known as living passionately, to make compassion what should be ordinary and expected. And maybe that is also what grace is. The smile that means what is happening matters. That life matters.

It’s what is done despite every outward sign that doing it would be futile.

~

I used to wonder what kind of self-hatred it must take to practice the kind of medicine in which you already know the outcome of every patient you will treat. To spend your days dealing only with goners. To go to bed at night so numb from the futility of the days’s work as to be half-dead yourself.

Her medical team was: a pair of neurosurgeons on opposite ends of the planet, a radiation oncologist whose ear-to-ear grin gave hers a run for its money, a world renowned neuro-oncologist who never failed to blow you away in the clutch, a palliative doctor whose name wasn’t the only part of his character that sounded like “love,” and too many registered nurses and aides who gave more—who were more—than I am capable of describing in anything less than a 10-volume manifesto. These are the people—nurses, doctors and the other dozens who fill in the gaps—the ones who have so brutally ripped the kitchen sink from the wall. They are the ones who have driven GBM to its most indestructible forms. The ones who will biologically push GBM past all it will know how to cope with one day.

Of this I have not one shred of doubt.

They will do this, not because of hatred but because they are relentless in their belief that life matters. They will do this because there are people like her who somehow hold that belief even more strongly than they do. Something always twigged for them whenever she walked into their waiting room, and they always started to say she’s different—but then scramble to immediately take it back after, because their training had taught them to think that everybody’s different. Except then she’d walk back in, round after round with that God damned smile until then finally they just said, OK OK she really is different. Because she validated the most profound depths of their belief.

When they push GBM past how it will be able to cope, they will spike it with a small measure of her to make sure it’s down.

~

To be honest, it’s difficult for me to be sad. I’ve teared about a hundred times—I tear up whenever I think about the fridge or Level I Spanish—but that’s not sadness. I tear up when my friend Anik rode her bike around South India, looking for an auspicious place and a Brahmin priest to say a puja. (And if you don’t believe in that sort of thing, I’ll tell you that puja was said the same night she sprang up on the eighth floor and started doing laps.)

I write back to my friend who is in an email cafe somewhere near the auspicious place.

It’s not sad like it is in the movies when people die with so much regret. The tears are what are shed at an airport—but more than that, they’re that stupid joy of seeing and realizing that her life has so viscerally touched so many people. That her life has amounted to “something.” That it is spreading. This is a paradoxical, but very perfect emotion for me. I think it happens like this when one glimpses the illusion of immortality. And in the end, I think that’s enough—the illusion.

I’d tear up when I talked with friends on the other side of the country too. The ones she has never even met call dutifully at first—but it’s mostly for my benefit, to see how I’m coping. “You don’t have to phone, you don’t have to pray,” I lecture. But they only phone more frequently, and I tell them, “Look, there are worse things happening all over the world—please, worry about those things.”

But they insist.

And then I realize.

This lady they’ve never met—they don’t necessarily feel so bad for her, they feel bad about the way life is. They are inspired by her. This dying librarian who likes to garden. Who has embraced life instead of death.

“Maybe I could drop by some time…” Shannon starts once when we’ve been up all night drinking red wine on opposite ends of the country.

“You don’t have to,” I emphasize.

There is a long moment of silence.

“It would only be for a minute…please? It would be an honour.”

And tears would start in my eyes. Because hall of famers blow free throws in the clutch and celebrities can’t sing a song and famous thinkers are famous only because they mock new ideas and the world is run by egomaniacs instead of statesmen. And these are the times that me and Shannon live in, and we drink so much red wine because we are so let down. But there are other ways to see all around us, and so then we are let down because we drink so much red wine.

And other friends—even still—come to me and insist: “Why her? She was too young, her soul too beautiful. How is this fair?” And I agree with them, but not in the way that they mean that it’s “not fair.” Because not only did she master what it means to inhabit human life—to fully realize life—she taught those she loved the trick. Indeed, why should that have happened to her?

~

She woke up in the morning and filled her belly with fresh fruit. For a while she had been putting it all into a blender. Wash it meticulously, chop it meticulously, then—at my urging— liquify it ruthlessly into something that was no longer whole. Until one day, she said screw that and went back to eating it whole again. She beamed when she ate fresh fruit.

A palliative doctor came by to check her over that morning. I wasn’t there, but can imagine the visit. Halfway through, the doctor realizes they have a mutual acquaintance—through the library (which is no surprise). But then a deeper flash of recognition occurs. The doctor suddenly realizes who this lady really is. The lady who gives comfort but seldom seeks it. The librarian. The Australian. With the garden.  Who likes cold plank-hard vegemite toast. Known by friends of friends and sometimes their friends. That lady doing all that walking. The doctor suddenly blurts: “My God, you’ve got strong legs.”

One of those dead philosophers said that you can have a kid or plant a tree or write a book. First of all, he should have said and instead of or.

And he should have said something about walking.

Their walks went between 43 and 47 minutes. Some mornings longer. Others less. Up and down hills; rain, snow, hail—all those pony express insurmountable scenarios—they always walked. They’d make their rolling observations about the neighbourhood—their piece of the universe—and between both of them, left foot, right, left and right again, she empathizing, he, her long lost other half, contextualizing the empathy, both reveling in having it all licked. For indeed, when you were walking, it was all licked. And we’d always take the walkers, their walking, for granted. We don’t anymore, of course—right down to the torrid swing of the arms on the upstride.

The most important thing we learned from the walkers is their practice of shared grace. That it didn’t have to be cruel or complicated; the walkers never let it get so. There was never any fixed destination when they walked, the point was only to walk and be happy to do so. Left and right and left and right. Every breath, every step, every movement and thought a way of conveying the big forever, the forever that only ever eventuates when two create something more eternal than each could individually.

That is my context for dropped jaws and 20 laps around the eighth floor at 4 in the morning with a fridge full of cooking waiting at home.

~

To those three noteworthy things saw I must add a fourth. I know she won’t like me sharing this last one, but you need to know it.

Near the end, her younger sisters come from Australia, the three of them break into a crying session. An epic crying session. Which gives way to an epic giggling session, which erupts into such deep laugher that her pants soon become wet. Which, of course, only brings more laughter and more wetness. Think about that for a second. She laughed so hard she wet her pants. How much more thoroughly can a human feel a moment than to let it trickle down her leg?

And I know she won’t like me mentioning that it wasn’t even the first time such laughing and wetness happened either—because there were other times over her 57 years. But actually, in the end she won’t mind me mentioning these times either because one day, God willing, you or I might laugh so hard as to pee our own parts, and she’ll like the idea that we’ll immediately reference her when that happens.

In the end—and this is something you should think about first thing in the morning when there’s something to be done about it, rather than late at night, because the end can arrive at any moment—I have learned that grace comes down to how much you are willing to succumb to a pointless moment. With laughter or tears, a stiletto full of piss—it doesn’t matter to what you succumb, be it taking a week to nail every last clue on the Boxing Day Crossword or talking to strangers on the train or starting on a long brisk walk up lots of hills—simply address the thing that is nagging as you read right now—or at least pause for a moment and acknowledge that there is that thing. And that you’ll set out on it this afternoon.

~

When she first heard about GBM and didn’t know what it meant, I hugged her the best that I’m confident I’ve ever hugged anyone or ever will. Because I knew what GBM meant. And by the way that I hugged, she then knew too. I had wanted to comfort her, but in an instant she realized that I simply had no will to let go. Every part of me was broken—the only moment of such total breakage I’ve experienced—and I realized that I wasn’t the one hugging, but the one being hugged.

This is living from dying, which has nothing to do with GBM. Because this was the concentrated way by which she lived an entire life.

So I guess you probably already understand that first paradox, the multiforme reaction of Helen Marie Koentges (HMK). I’ll set it down here for good, nonetheless:

As she went six times as long with GBM as what is supposed to be “average,” the ways of her mutated. She glowed and laughed and walked and worked in a garden that would die in the autumn. And as she did these things, the impact of her existence, via the motley lives of those she accumulated, it mutated in a way that can only be quantified and tracked by the expression: “negates the prognosis.” Friends and friends of friends dropped by to take her with them, and while she struggled to beat back GBM on one small area of a brain, the force of her life swirled. The resistance swelled. A smile and calmness shrouded her until her very last breath. With a cheeky wink and shrug, she out GBMed GBM. And now it—and its multiple forms are dead—while her ashes are in her garden. And we walk with her grace.

~

2,857 is the number of points Gretzky amassed in his career. There are 182 pages in Scribner’s edition of The Great Gatsby. 1492 is the year Columbus discovered America. And that year, Forbes magazines valued Bill Gates at $52.3 billion. And none of it inspires me anymore because in the end she has taught me better.

What is inspiring?

Some time back, when I took my stool, ordered stout, and my friend asked the question he would always ask, “How’s your Mom?” I answered  “Ian…it’s the last thing I would have thought I’d say in a million years. I’m embarrassed to even say it like this right now…this-this-this, you know, middle-aged librarian, who gardens and reads and goes for walks—Christ, man, my MOM, you know, has become…” He ducked his head in a little as I whispered the last bit. And he thought about it for a few seconds, then nodded slowly to indicate that it’s not entirely weird that a guy’s Mom could also be that. And I asked: “How’s she?”

“She’s tough.”

Shortly after she died, I finished Level I Spanish. There was borscht in my freezer. Her garden bloomed again that Spring. And a few days from now, when I walk to meet my friend for another beer, I will go the long way. Always life must pass through death. And by that I don’t mean what you think I mean. Or maybe I do.

CHRIS KOENTGES

5 Responses to “Eat. Sleep. Walk. Smile. Die.”

  1. Pablo906 September 14, 2013 at 1:26 am #

    I wish I could have met her. She is the kind of person the world is worse off because she’s not in it but at the same time it’s changed forever in a good way because she was. The paradox of life I guess.

    • veryethnic September 14, 2013 at 10:16 am #

      That is the paradox. Thanks for your kind words.

  2. Ravinder Tulsiani Learning Consultant July 13, 2013 at 4:18 am #

    excellent

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