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Thursday, December 18, 2014

Why the "War on Cancer" doesn't work

We Americans like declaring war on nouns –  drugs, terror, and of course, cancer. (I’d like to declare one on flagrant misuse of the apostrophe, but that’s just me.)


And a thousand cancer patients said, "No shit."

Aside from things I've said before about the problematic nature of the word survivor, and the idea of someone "winning" against their disease,  this study unveiled a new issue: they found that patients in the “war” group were less likely to engage in preventative behaviors, and general wellness. Because painting cancer as an external enemy ("An unstoppable rebel force," to quote Meet the Parents) rather than a part of our bodies, changes to way we approach it

This is interesting, and walks this really fine line. I am anti-patient blaming: it’s not the patient’s fault for getting sick. This might seem obvious, but there are real stigmas with certain diseases. For instance, with lung cancer there's an idea floating around that patients who had smoked deserve whatever cancer they get. That they don’t have a right to have feelings of anger or sadness, because they made their own bed. (And the even more intensely stigmatized disease, is of course, HIV/AIDS. But let’s stick to cancer, the devil I know.)

The truth is that cancer is part of the body. My cancer cells were made by me. It is not my fault that it happened; it was an accident of cellular division. But it came from within me. And that’s  hard to wrap my head around. Why would my body try to destroy itself? What the fuck did I ever do to you, body? (Wait, don’t answer that.)

The cancer-as-enemy idea correlates quite neatly, for me, to that of demonic possession. The idea of "The devil made me do it." Casting blame for wrongness, whether for a crime or a socially stigmatized thought or obsession, onto an outside actor can be attractive and comforting.

I’ll use an example from my own life – intrusive and obsessive thoughts. All of us have these thoughts one time or another – something horrible that pops into our heads for a second, seemingly out of nowhere. Many people are able to dismiss these for what they are – odd blips of the brain. But others, like me, can become obsessed with them. Why did I think of that? Does it mean that I am evil/violent/a criminal? This thinking becomes circular – fears that you are evil tend to lead to strange “thought experiements” to test your evilness, and those thoughts reinforce the idea that you are evil. The thought pattern grows out of control....kind of like cancer cells.

It’s attractive, for someone trapped in this circular thinking, to be able to blame something else, like the devil, for implanting those bad thoughts. 

In the same vein, it is common for people to dismiss actual criminals as simply evil, inhuman, rather than admit that within all of us dwells the potential for carnage and destruction, and that the wrong circumstances will unleash it. (see Milgram, et al.)

Carnage and destruction are possible not just externally, but internally. Everyone reading this has a cancer cell of their own making floating around right now. More likely than not, the immune system will find it and neutralize it.

But sometimes the immune system misses, and you've been exposed to the right environmental toxins, and you have the right gene mutation. And boom. The damaged cell divides and divides, growing its tumory self all up in your breast (or prostate, or kidney, lung, skin, brain, liver...).

What if, instead of fighting cancer, we sent love to it? Imagined healing the damaged cells, instead of annihilating them? They are just broken pieces of ourselves, after all.

The other thing about war is that many innocents die. And enough, please.

Thursday, December 11, 2014

Wild and Precious

Saw Wild tonight. Run, don't walk, people. Or actually, you probably should walk. But fast.

I read the book of course, and as some of you know, took a writing workshop with the one and only Cheryl Strayed over the summer.

The film is something else altogether now. It's the first time I've seen an adaptation as a companion piece to a book, rather than retelling. The gorgeous editing, the visual and auditory links between scenes actually enhanced my understanding of the book. The book and the film hold hands and sing.

Things have been happening, dear reader, to explain for my recent absence. I have a new job: community manager at this fine place. I'm leaving the one I held for ten years; my entire adulthood. I recently finished a draft of my novel (like, last night. Matt's reading it next to me on the couch as I type). 

When I found out I had cancer, my world became small. Cell sized. I could live and die by a single one. And slowly now, I'm fanning out again, world opening up like an aperture. Letting it all in. 

There was a time when I proclaimed that I simply refused to die from this. Something I have no control over. But I have control over how I live. And I refuse to live small.

So that's all for the moment. As things settle down I will say all I have been wanting to say to you. I will leave you with this:

Tell me what is it you plan to do with your one wild and precious life?

Mary Oliver
& Cheryl Strayed

Monday, November 24, 2014

More Required Reading

This week I've been reading Smoke Gets in Your Eyes, by Caitlin Doughty, mortician and founder of The Order of the Good Death.

Death has been on my menu lately. You might say, it always has. While my sweet husband didn't attend a funeral until he was in his 20's, death has been a regular presence in my life. When I was about a year old, my mom's father died. On the day of his death, I ate a tube of his Ben-Gay, and my dad had to give me syrup of Ipecac.

He died from cancer.

When I was seven, my dad's mother died. From cancer.

When I was a little older, my brother's best friend died. From cancer.

Then a great aunt, aunt, cousin, friend. All from cancer.

In 2006, my grandma died in front of me, my mom, my brother, my dad, in our driveway, on the way to the hospital.

So not a surprise, I guess, that over the years I tucked things away, ideas for my own funeral. It came into sharp relief when Matt was diagnosed, and I thought, "I really need to know what I want here." So here it is, for everyone to know:

I'm still deciding if I want to be cremated or have a green burial. But I want my remains, whatever form they take, to end up in a place with horses. I want a ceremony outside. I want selections from Leaves of Grass, Watership Down, and The Velveteen Rabbit to be read by people I love. These are texts I find comforting, and hope others do too. I love horses. I love outside.

I'm not dying now. Not more than anyone else is.

But all of us will die. And yet, when someone says "I started planning my funeral," as many do after a cancer diagnosis, tongues are clucked, and the person is told "Don't go to that place." Well, why the fuck not?

In her book, Doughty delves into the fascinating world of modern American death. The bizarre detachment we have as a culture from it, and how our funerary practices support and perpetuate that. How, despite our love of violent movies and zombies-as-trope, we are terrified of the corpse.

In graduate school, I spent a bit of time with antebellum American death. One historian that I quoted in a paper on the subject said, and I paraphrase: Sex and death for the Victorians are like sex and death for us, only flipped. Our culture shuns death, and it overt about sex, while the Victorians shunned sex and were overt about death.

And we all know how fucked up the Victorians were about sex. 

Walt Whitman was a medic during the Civil War, and he writes about piles of limbs, and dying soldiers whose hands he held. In this light, contemporary Emily Dickinson suddenly becomes not a reclusive, morbid early-Goth girl, but product of her time (in addition to a genius).

It is not bad to think about death. It doesn't mean you are weird, or wrong, or not nice. I think it is unhealthy to act like it will never happen. Because, as they say, it's one of only two guarantees in life.

I believe, more than anything, in the talking cure. So let the first step be this remarkable book.

Monday, November 17, 2014

He kindly stopped for me

The other morning, on the way to work, I found the body of a little bird outside my door. Still warm, but stiff. Eyes half open.

A dead bird has always seemed ominous to me. A harbinger of doom, or a reminder of fragility. When you come upon them, it's often hard to believe they're dead. They are still so perfect and beautiful, usually with no apparent injury or sickness. Like they just fell out of the sky. A memento mori. 

As if I needed one.

After Sherri died in August, I felt, I don't know, adrift somehow. I only knew her online, and in a sense she'd died for me before she left her body, because her posts stopped appearing. I cried many times before her death. But when she did go, I felt lost and empty, tears all dried up. I couldn't understand it, as stupid as that sounds. 

Last year, Showtime ran a series called Time of Death. It is an unprecedented documentary about terminally ill people in their final days. When it came out, I heard about it, I registered it, I filed it away as one of those important things that I wasn't ready for. After Sherri died, I decided it was time. 

Because death is visceral, solid, hard, and it felt as though she was spirited away, gone in a puff of smoke. I knew that wasn't true. I wanted to know what her final days might have looked like. 

I watched the entire series in a few days, while I was recovering from surgery. It was hard, undoubtedly, but not impossible. It was unflinching, it was kind. It was important. Most of the people profiled had cancer. They all died differently. As differently, probably, as they lived. Some at home, some in the hospital. Some with a glorious intention, others slipping away, struggling, not ready. Some surrounded by family, friends, nurses, cameramen, and one, completely alone.

When talking with a friend over the summer, he let slip, "If I die..." Not if, I said. When. When.

I wrapped the dead bird in a paper towel and took her to the garden. A policeman's funeral was happening down the block as I buried the little thrush, and the bagpipes started up as I poured earth over her body with my trowel.

I felt a squeeze in my heart for her, and all the other lost ones.

Friday, November 7, 2014

More required reading

All That Is Limitless

Hannah Gamble

I usually wake up with acquisition
in mind.

I make myself the tallest pine;
I have more birds on me
than anybody!

The sun hits my head
first—it’s cooled a bit
by the time it gets to your head.

I thought I’d get the most

if all the good saw me first
and affably went there.

It was sound,
my lightening rod approach.

One oversight
was that when the bad was coming
it also saw me first,

and would match its force
to my height in a way
that, I’m sure, if I had a stutter
or a limp
would be lessened.

In any case,
it’s time to get lowly.

Put on a formless gown
and call it a shroud
for your vanity, a gold braid
o’re your forehead

or a word you have
to explain
to everyone at the table.

Even if it wasn’t vanity, but hunger.
Even if it was mostly enthusiasm
and affectionate regard. An invitation
to join (less like “participate”
and more like “become an actual part of,”
cutting a part off so it fits
more snugly with the other part.)

Now you have a bed.
Now you have a table.

If the wood is still living
we’ll make not furniture
but a living structure:
We can do what we call grafting.
This too requires a bit of cutting.

A dormant bud
can be cut and grafted,
as can a young shoot,
but in all cases
the point of vascular connection
can end up weak
due to the varying strengths
of the two formerly distinct tissues.

Once I blew my nose in a cafe
despite the number of approximate men
in beautiful sweaters and I knew
I’d become another thing.

Now when a block is sawed up
it is made into implements.

The finest sculptor carves
the least. In this way,
the block rests
within all that is limitless.