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.

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.