The Emperor of All Maladies hastens The Long Goodbye

But first: The Massachusetts Poetry Festival begins tomorrow! The poetry world will descend on Salem and it will be awesome. (Aside: I was researching parking etc on Google, and, as I began to note the many paranormal/witchy shops, wondered, What’s up with that? Yeah, that’s me, just a little slow on the uptake.) Saturday is the small press fair, my favorite event of all. If you’re planning on being there, be sure to stop by and visit me at the Tupelo table!

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I read The Emperor of All Maladies in the fall, but never talked about it after, though I meant to. It’s a perfect counterpoint to The Long Goodbye. The first is a fat compendium of all things cancer — the history of its discovery, the evolution of our understanding of it as a varied disease, the progress and perils of cancer research, as well as the stories of researchers, doctors, and patients themselves. The second is a memoir of love and loss of a mother to cancer, intimate, exquisite, and painful. Both are essential reading.

Cancer is a topic you’re only allowed to discuss within a certain framework. You must be positive, talk about fighting it, be plucky. What we don’t consider by blithely subscribing to this terminology is how doing so proscribes a value judgment on the way patients handle their diseases. Every cancer is different, and while being optimistic may be a good way to get through a shitty day, it’s not the liminal factor in survival. A patient who receives his diagnosis with depression and despair isn’t weak, just realistic. My mother was cheerful and determined, but that didn’t keep her alive; her handling of cancer was an extension of who she’d always been, and we should accept that of whoever is dealing with illness, not demand that a life-threatening diagnosis suddenly effect a personality transplant, and then blame the patient when that doesn’t happen. Folks are dying, the last thing they need is our expectations, or worse, directions, on how that should proceed.

One of the things I love about The Long Goodbye is how honest M O’R is about her and her family’s flaws as they fumbled through her mother’s illness. The mistakes, the flares of pettiness or just plain selfishness. Because we can’t always be our best selves in the best of times never mind the worst of the worst. Illness is hard work, caregiving is hard work. Brutally elementary and elemental. This is life, this is death, and while there are moments of amazing transcendence, losing your mother is permanent, final, and nothing less than awful.

Raina Wallens has a piece over at The Rumpus that wonders why 5 grief memoirs in a few years is considered so notable. For those of us in its grip, these memoirs of grief are vital:

Ask anyone in mourning and they will tell you how alone and isolated they feel. They will have countless stories about inane and insensitive remarks, or other peoples’ avoidance of them altogether – the death cooties. Too often, people in mourning are made to feel like they must worry about appearing too sad so as to make others uncomfortable. You always need to be pressing on, firmly in one of the designated grief stages. And if you haven’t “gotten over it” in a year, well, what’s wrong with you?

Live long enough, or not! — death touches us all. And, statistically speaking, cancer as well. The Long Goodbye hurts to read. It should, the story it tells is deeply human. But it’s funny, too, and anyway, isn’t reading about opening ourselves to the wider experience of what it means to be human? M O’R marshaled her inner resources to tell this story, and in the telling, honors her mother’s memory. To read it is to lose her mother with her, and your own as well, the emotion is that palpable. But what a mother she was, and how glad I am to have met her, even though that meeting was in the pages of a book. And the conversation M O’R has started about grief is long overdue.

The nature of cancer is as protean as the nature of grief. If you take only one thing away from The Emperor of All Maladies (though there’s so much more), it should be that there can be no cure-all. This is a critical shift we need to make in our thinking about cancer — we’re so obsessed with magic bullets. But cancer is wiggly, and adaptive, and endlessly varied. Cancer isn’t even cancer, but cancers. The most we can hope for is cancer as something we live with, but don’t die of. Cancers as chronic diseases, akin to diabetes, or COPD. Not curable, progressive even, but treatable, not immediately fatal. Not any more of a death sentence than life itself.

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I’m not afraid to remember my mother as she was at the end of her life, weakened and frail. She wasn’t less just because she was sick. Any moment more was precious. Her smile still lit her careworn face.

I mention this because many people said to us that they were sorry they hadn’t visited my mother as she became ill, but they couldn’t bear to see her “that way.” I understand, but.

But.

They lost out. They lost their chance to be with her and be there for her.

And I want to urge you (all three of my readers): if you’re ever in that position, go. Go often. You’ll be needed, in a thousand little ways, and you’ll be making memories, memories you’ll draw on in a thousand little ways later, after.

As I’ve said, critical illness has a way of burning away the inessentials. Visiting someone you love, someone who’s dying…really, what could be easier?

Mum with her oncologist at the cancer center's St. Patrick's Day party, 6 days before she died.

Despite it all…

…I know I’m lucky. I’m lucky that I was born to a great mother, that I loved her and told her so all the time. That I was able to be there for her and that she let me care for her was a real blessing. A critical illness has a way of burning away all the inessentials. The pain I’m in now is because I love her so much — my grief is the best tribute I can offer.

I’m lucky that I have so many sweet and thoughtful friends who thought of me and how difficult Sunday would be for me, and reached out with comfort. I know there will be many such hard days ahead, but I confess I didn’t handle this one very well.

And I’m lucky I have these boys, and their patient father, all of whom look stricken every time I go out “for poetry,” but let me go nonetheless. The poetry is returning — a new poem last week, another brewing — but nothing could happen if they didn’t give me a little space to maneuver.

And I like to think they’re discovering the exhilaration of creating for themselves…

Beyond any notion of a beginning

When we talk about love, we go back to the start, to pinpoint the moment of free fall. But this story is the story of an ending, of death, and it has no beginning. A mother is beyond any notion of a beginning. That’s what makes her a mother: you cannot start the story.

But, oh hell, you keep trying.

— Meghan O’Rourke, The Long Goodbye

I’m back to stories again; they’re inescapable. The thing is, more than ways of making sense of your life, they can be companions, ones who’ve been there before you. Maybe they can’t show you the path through the dark woods — because there is no one true path, is there — but they can keep you company as you go. It’s an unspeakable help.

I was lucky enough to receive in today’s mail an advanced reader’s copy of The Long Goodbye, by Meghan O’Rourke. I will write about it when I finish — I’m 40 pages in and find it painful and exquisite and necessary. Reading about her parents’ courtship reminded me of the story I learned from my mother just a few years ago —

At 21, my mother went on a double date with her best friend, Estelle, and her beau. This was in Georgia. Dad was a yankee, only there because he’d joined the Navy and was in training at Fort Benning. My dad was a mate of this beau, and he had a car. They chose my mom’s date, my dad, because he had a car.

They hit it off: engaged in 4 weeks, married in 6. Can you imagine?

How our lives can be hinged on the most random details.

One of my brothers tells me that they had a rough patch in the 1970s, but I don’t remember that. I remember him giving her a kiss every day before he left for work — actually, it was more like a series of kisses — their goodbyes were always long.

But his leaving was abrupt. A massive heart attack at 49. It never occurred to me that my mother would remarry. Some do. But I knew — he was her all. She’s never stopped missing him.

A critical illness brings you up short any number of ways. Points a finger at you and asks, What do you believe, anyway?

I was brought up Catholic, but aside from various ceremonies haven’t been in a church in a decade. I think of myself as agnostic/borderline atheist. I might allow that there might be creators up there, but if so they’re much too busy to bother with us and our insignificant lives.

And yet it appears somehow I’ve harbored the hazy half-formed belief that the universe owes me for taking my father so soon. As if the universe has ever been an entity that bargained. Or apologized.

My mother’s universe is shrinking to the size of two rooms.

She sleeps in a recliner, and has for months — stairs are simply insurmountable. Neuropathy in her hands and feet cause her hands to shake so much that she needs her meals cut for her, can only drink from cups with handles.

The bathroom is but a few feet from her chair, but it’s still too far these days. She has a walker, but her every movement takes an infinite amount of energy, leaves her depleted and exhausted.

She’s sleeping much more than she was just two weeks ago. She’s not as alert as she was, becomes confused easily. Her pain meds haven’t significantly changed. This isn’t morphine brain. This is cancer, on the march.

Among other things, she’s on oxygen, fentanyl patch, oxycodone, several steroids, and a diuretic — her feet have swollen to the point where the skin has cracked and become infected. No more chemo until it heals.

And she didn’t have chemo last week because her platelets were low. Chemo was interrupted earlier to try radiation on the metastasis in her spine. And during these necessary interims between chemo her cancer counts have sky-rocketed.

Her legs are weak. Tomorrow she’s having an MRI to see where else the cancer’s traveled.

But she still wants chemo. She may be dying, but she’s not ready to stop trying to live.

I may never be ready to live in a world without my mother, but it feels like some sort of grace that we’re being given this long goodbye.

(Who’s doing the giving? Don’t expect consistency from this quarter.)

And in the grand and small scheme of things, it’s not about me. Because with or without her, I’ll get to keep on living.

Too True

The 4 truths and one lie about myself, with the lie revealed:

  1. My tenth grade teacher called me the Emily Dickinson of our class. When I showed him my next poem, he took a friend aside to inquire about my mental health. I laughed. “Poetic license, dude!”  **TRUE. My first lesson that readers often confuse the speaker of the poem with the poet herself, that poetry occupies a middle ground between fiction & nonfiction that the average reader finds challenging to navigate.
  2. While working during the Thanksgiving weekend as the manager of a mall store in my early 20′s, I gave directions to one of my favorite soap opera stars. I didn’t act weirdly or ask for his autograph, just smiled big so he’d know I knew, see how cool I am?  **TRUE. My introduction to soap operas was my grandmother, who lived with us the last couple years of her life. The soap she never missed, which became the soap I never missed (until I moved away & stopped watching soaps) was “Another World,” and my favorite character was Cass Winthrop, a smart-ass lawyer played by Stephen Schnetzer. He apparently had family in the area that he was visiting for the holiday weekend, and they came to the mall. I can’t remember where I gave him directions to, but indeed I smiled a mile wide. I’m smiling now. I love that guy.
  3. I have a heart-shaped uterus. Is that TMI? **TRUE, due to a small septum.
  4. My twin brother was born 4 minutes before me. My mother didn’t know she was having twins until after he was born. “Whoops! Guess what…!”  **FALSE. I have a twin, and my mother didn’t know she was having twins until the first one was born, but the first twin born was ME.
  5. I haven’t written a new poem since December.  **TRUE, sadly enough. Between trips to my mum, AWP, and illness, nary a poem has been written. I’ll amend that soon. I hope.

There you have it. So the winner is Donna! And the runner-up, for her kind, if  misplaced, benefit of the doubt, is Victoria. Both of youse email me your snail mail addresses ( mgauthier DOT hunger AT gmail DOT com ) and I’ll send you something wonderful next week.

In the spirit with which it was given

Many thanks to Karen for the Memetastic Award (which I keep reading as the Metatastic Award, but nevermind) and the sweet and generous things she said about me and my blog. This is just the sort of thing I’m terrible at — I never met a chain letter I didn’t break, never confronted a set of rules I didn’t feel compelled to vary — but nominating 5 more bloggers is the easy part, though it’s not exactly easy to limit myself to 5. In no particular order:

  1. Emma Bolden: She writes really long posts on topics as divergent as poetry & pedagogy & play-doh, and includes such awesome visual aids as stick-figure chalkboard drawings and “pirate vs. ninja” — go, now.
  2. Carolee Sherwood: Her struggles for balance between art & family, rough drafts of poems, book reviews — Carolee is open about it all, a bright light showing the way.
  3. Jeannine Hall Gailey: Health challenges, various moves initiated by forementioned health challenges, employment travails, all while maintaining an active (& fruitful! new book due this summer!) creative life. Pluck, thy name is Jeannine. Where else can you go to get a shot of Buffy with your poetry?
  4. January Gill O’Neil: Poet mom of two, MassPoetry committee member, January took the question of how to market yourself as a poet from taboo to front & center. Her packed schedule shows she knows what she’s talking about!
  5. Amy Dryansky: Her blog’s title says it all: “Pokey  Mama — Poet. Mother. Worker. Member of the slow-parenting movement.” The out-of-order chronicles of how one poet birthed a book and babies, and what happened next. Among other things.

Some of my other favorite blogs have already been nominated elsewhere. Thanks to all of you for expanding my universe and providing endless hours of reading pleasure.

The next part of the requirements is for me to tell you 5 things about myself, only 1 of which is true. Instead I’ll tell you 4 truths and 1 lie. Which is the falsehood?:

  1. My tenth grade teacher called me the Emily Dickinson of our class. When I showed him my next poem, he took a friend aside to inquire about my mental health. I laughed. “Poetic license, dude!”
  2. While working during the Thanksgiving weekend as the manager of a mall store in my early 20’s, I gave directions to one of my favorite soap opera stars. I didn’t act weirdly or ask for his autograph, just smiled big so he’d know I knew, see how cool I am?
  3. I have a heart-shaped uterus. Is that TMI?
  4. My twin brother was born 4 minutes before me. My mother didn’t know she was having twins until after he was born. “Whoops! Guess what…!”
  5. I haven’t written a new poem since December.

I’ll tell you the One False Thing in a few days. To add even more fun: The first person who guesses which is the LIE in the comments gets a free somethingorother. So have at it. AMENDMENT: only one guess per reader, but every reader who guesses correctly will get a treat. Why be unnecessarily limiting?

For those I’ve nominated, in hopes you’ll have fun with this: The rules: 1. link back to the blogger who awarded you. 2. Display the graphic from the award creator. 3. Post five facts, four of which must be lies and 4. Pass the award to five other bloggers who should follow these rules.

Let it snow! (Baby, it’s cold outside…)

Finally, the day after Christmas, we’re having our first real honest-to-goodness snow storm! There’s nowhere we have to be, plenty of milk, cream, cocoa, tea, and coffee (covering the holy trinity of hot beverages) on hand, and thus we can hunker down and enjoy the view.

With me and the boys down with colds, visiting my mum and her chemo-depressed immune system for Christmas was out of the question. So we had a quieter sort of holiday. Which is the sort of holiday our economic reality is happiest with anyway. Though not the kind of quiet that means silent — my stepsons brought fireworks. Rather a lot, actually. Because nothing says Christmas like explosives.

I’ve packed a bunch of reading into this mini-break — I tend not to use the computer much on weekends if I (and my Duotrope addiction) can help it — while the boys have been deeply attentive to creating art and play-doh wall stucco. Where it used to be I couldn’t read more than one book at a time, I seem to have a compulsion these days to hoard a disparate pile of library books along with my usual supply of literary journals:

I read The Immortal Life of Henrietta Lacks (an interesting follow-up to my reading of The Emperor of All Maladies — the writing’s less elegant, the science less difficult, but the story of the Lacks is utterly heart-rending), the new issue of Poetry Northwest, an urban fantasy novel whose title I won’t mention because I can’t wholeheartedly recommend it but which held my attention, and I’m 440 pages into The Amazing Adventures of Kavalier & Clay, which I really love and I’m trying not to rush through. Without re-reading something from my shelves (which is not out of the question by any means) I’m currently without a volume of prose on poetry, having returned Mentor & Muse to the library — any suggestions, anything new out there I may not have heard about or read already?

Between reading jags I’ve baked blueberry muffins, picked up various wood blocks and legos, and joined my sons with their crayons. Vincent was drawing an elaborate series of small rectangles, something that resembled a spread-out brick wall, and then below them at the bottom of the page, he drew a single small rectangle off by itself, and announced, “This is the lonely one.”

“And why is he lonely?” I asked.

“Because his parents are gone,” Vincent replied mournfully.

“Where are his parents?”

“I think they went to the bank.” He looked up. “And then they went to a poetry reading.”

I told Lance how delighted I am that our not-yet 5 yr old’s world includes the idea of a poetry reading.

He raised an eyebrow. “Oh? And how about the fact that he equates poetry readings with loneliness and abandonment?”

Criminy.

A Life of Plenty

Gennady Privedentsev, “Still life with horn of plenty”


Spell to Be Said upon Waking

Trout’s maculate body,
delible house of the wasps’ nests,
white face of the horse —

Draw close.
A shadow closes your foxgrass,
lichens your boulders.

Cloudy the vow of the leaf in the water.

Lion, where is your hunger?
Come tortoise, come river, eat.

Desire, walk easily now through the wild net
of birchwood in rain,
on mountain-back carry the brindled immeasurable day.

— Jane Hirshfield, from The Lives of the Heart (HarperPerennial, 1997)

Happy Thanksgiving!

Intimations of Mortality

Lately I’m expending a lot of effort feeling frustrated by the lagging response times of most of the journals I’ve submitted to, fighting the urge to dash off mild yet curious emails regarding my poems. I feel stymied, depressed.

Lately I’m frustrated by my failure to stabilize Aidan’s ever-erratic sleep schedule, my attempts at weaning, my formerly reliable and now nonexistent writing time. My, my, my. Stymied, depressed.

There’s more, there’s always more, especially in the fall. Lovely, the blazing migration of leaves, but I’m not ready for the morning frost. The cold nights. The days with more than just a snap in the air. The early dark.

But really, it’s all a smokescreen. Because my mother is fighting lung cancer, and who isn’t helpless in the face of her mother’s mortality? The reminder that life may be tenacious, but still as frail as cicada husks.

The use of the word cicada is not gratuitously poetic. It was my mother who taught me the correct pronunciation of cicada, who identified that constant buzzing sound for me when we visited family in Georgia.

Since suddenly losing my father in 1993 this has been a fear, because only with that loss did the possibility of further loss even occur to me. It’s not news that youth carries a nearly impossibly impenetrable sense of immortality. Nearly.

I’m writing about this here because even though I’ve been distracted, I have no intention of letting A View from the Potholes become a fallow field. My tenacious life has transformed and expanded, and retracted, too, in so many ways since that night in 2007 I began.

Grave illness doesn’t have to mean that everything else pales in importance. I think that’s a mistake. Perspective is good. Having a sense of proportion. But life isn’t a hierarchy.

In the first episodes of “Lost,” the character of Jack said something to Kate about dealing with fear that’s always stayed with me, though I missed its last seasons. He said that when he’s afraid, he gives in to the fear, allows it its full rein, for five seconds. For five seconds he lets the terror in. Then, at the count of five, he moves on.

One. Two. Three. Four. Five —

 

Telling tales

For 48 hours, from dinner time on Thursday until Saturday night, Vincent was enthralled by “Syllabo.” His “sister.” He began talking about her and the island where she lived and barely stopped for anything. He appeared by the bathtub while I was taking a shower to tell me more (“Mommy, did you know that Syllabo can climb tall trees, all the way to the very top?”), and then by my bedside at 2:45 am (“We love to play basketball together, me & Syllabo.” “Syllabo has a cape. And a motorcycle-rocketship.”) — I couldn’t quiet him back to sleep until 4:00 am. Sunday the Syllabo-obsession tapered off, probably due to lack of sleep, but today it’s returned, in a milder, but more active, form — he wants us to go visit her tomorrow. Right on.

(For a brief period he also referred to her as his girlfriend. But I was quite strenuous on the distinction: there’s “sister” and there’s “girlfriend” and never the twain shall meet.)

At this very minute he’s drawing me a picture of her all the while keeping up a running commentary: Syllabo is a princess mermaid that can walk and she has a tree house in her back yard.

It’s a revelation that he’s drawing recognizable things now — it seems like his pictures transformed from indecipherable scrawls overnight — but I’m most looking forward to his discovery of reading and writing. He knows his letters, can write his name, but he doesn’t yet connect how letters form words. When he does, when he learns how to make the stories he tells into his very own books… Can you imagine, can you remember, the absolute  wonder of it?