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[cancer] On hope, some thoughts to balance pain - Lakeshore
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Jay Lake
Date: 2010-05-31 08:05
Subject: [cancer] On hope, some thoughts to balance pain
Security: Public
Tags:calendula, cancer, child, family, health, shellyrae
Yesterday, H— asked me if I'd be willing to spend as much time writing about the good side of my cancer experience as I'd invested in my lengthy post about pain and discomfort [ jlake.com | LiveJournal ]. Not coincidentally, my friend daveraines, UMC pastor, writer and all around good guy, wrote me with this question:
"Face the brutal facts, but never lose hope", which is from Jim Collins' business book, Good to Great. It's one of the attributes of a great company. You've been really upfront about the Brutal Facts of chemo. As I was praying about you, I wondered what you thought about the "never lose hope" side of the equation. You may not be in that place right now, I understand that, but I thought it might make a good blog entry.

Well, okay. To narrowly answer H—'s question first, no. I don't think the good balances the bad here, except in the macro sense that I get to continue living with the reasonable hope of resuming my normal health. On a day-to-day basis, this experience sucks rocks. I can and will talk about the good here, but I don't subscribe to what Barbara Ehrenreich calls "the cult of optimism" that surrounds cancer treatment. Cancer is not happy fun time. It is not ennobling. It is not some medical vision quest or a calling to improve your life. It's a freaking disease. You'd rather clean the gutters and scrub the toilet every day for the rest of your life than go through this. Cancer is degrading, depressing, difficult, damning and for far too many of us (including Jeanne Robinson just this morning as I write), fatal.

But daveraines and H— are both right, too. There is hope. Or there can be. Certainly there has been for me.

As I mentioned recently [ jlake.com | LiveJournal ], cancer certainly has been a teacher. That cancer is a teacher is a stupid cliche and I hate it, but like a lot of cliches, it's founded on a truth.

I have been forced to vastly expand my patience. Which is ironic, because I thought being a parent had already done so, but no, there are whole fields beyond the historic horizons of my forbearance that I have been forced to explore. The processes of the disease, which have been largely but not completely invisible, and the processes of the treatment, which have been profoundly disruptive, require all the time and energy they require, regardless of how I exercise either my Word or my Will. Some things are simply larger than I am.

Maybe that's a lesson faith teaches that us raging atheists miss. To me, the world has always been a place to be understood, analyzed, conquered, climbed over. A giant toy, in a sense. Cancer and chemotherapy rob me of much of my power to behave that way, and replace it with a demand for silence, waiting, patience, and, though I fight it like the madman in the attic, acceptance.

But my patience is also my weapon. I will outwait this thing, and someday it will receded, and I will grow again. I will win this fight without ever landing a blow. Which is to say, peacefully abiding my time — patience — is refuge as much as weapon.

Cancer has also cultivated that sense of peace and acceptance that I never possessed before. I've written a lot about struggling against this. That's not some manic denial when I do so, that's me making sure I maintain my core of self and my core needs intact. But even the struggle is a form of acceptance. I don't struggle against that which must be done — sleep, the infusions, the fatigue. I conspire with my body to give it rest and food even when my physiology is in an uproar. It probably sounds strange to say that I find peace in struggling against the limits of my disease and its treatments, but that is true. The struggle takes the form of the patience I mentioned above, and the peace rises in part from accepting the limits of the process. I wouldn't be me if I didn't keep trying to climb out of the cancer box, like a reverse zombie rising to live from the deadly pall of this experience.

And hope, in the form of the love and acceptance and support of the_child, calendula_witch, shelly_rae, my family, friends, fans, acquaintances, random strangers, and what some days feels like a decent swathe of the Internet. I have over a hundred spoons in my house sent to me in support. About two dozen hats. More emails and comments and Facebook postings than I could ever count. I am probably the least lonely cancer patient in the history of chemotherapy. The infusion center long ago gave up on the rule about two visitors maximum, simply because of all the coming and going that happens when I'm in there. My house is a veritable hotel of visitors and friends.

All of which is to say, there is good in this. Much good. But where the trouble and pain is the infrastructure of the whole business of cancer, the good is like flowers in the cracks. I find and harvest it in small quantities. I treasure and cultivate it. I seek it out, and sometimes it seeks me out. But in my experience the good, and the hope, are despite the processes of cancer and its discontents, not because of them.

I hold them close because the alternative would have been to give them up. I'm not sure anybody survives medical adversity simply because of a happy heart, but I'm pretty damned sure you can perish in medical adversity simply because of a heavy heart.

When you get right down to it, I refuse cancer. I refuse to sicken and die. I want to live far more than I want any part of this. That's the basis of my hope, and that's why I hunt the good, both actively with a gimlet eye, and passively by letting it find me.

If you're going to swim in shit, you may as well pick the flowers that grow there.

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User: (Anonymous)
Date: 2010-05-31 15:49 (UTC)
Subject: (no subject)
Good post. Dave was right!

If you have a photo of some kind of shitflower bouquet, it should be your next Moment of Zen.
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mevennen
User: mevennen
Date: 2010-05-31 16:31 (UTC)
Subject: (no subject)
Jay, whatever befalls you, you are one of the most relentlessly honest people I've ever known and that is why I admire you as much as I do.

This is purely a personal opinion, but I think people have, in recent years, been loaded up with positive accounts about X, Y and Z beating their problems, overcoming, turning into better people as a result. Quite a lot of the time, this doesn't happen.

I'm trying to choose my words carefully here, but I probably won't succeed. The task of the cancer patient is to get better. It's to be as selfish as possible, and do what works. It's not to make other people feel better about their own experience, or yours. Whatever it might achieve for oneself, it's not about teaching, or giving spiritual counsel, or providing an object lesson.

Cancer has become one of the big metaphors in Western culture. No one talks about TB in the same way, or even the flu (which, obviously, can and does kill). More weight is piled onto the shoulders of cancer patients than any other illness - it's got Meaning, it's Something you're Holding Back (don't get me started on this one - the number of people who told Trevor that 'there was something he wasn't expressing' when he came down with throat cancer was legion). More New Age bollocks gets talked about cancer than about any other illness - one assumes, because people are so shit-scared of it, rightly, that they try to hedge it about with all manner of significances to try and keep back the dark.

Yes, there are flowers, but it's still shit. Good for you, for saying so, and for not giving into a cultural pressure that's as insidious as the disease it claims to depict (although the day you give into cultural pressure will probably see the National Hell Ice Skating Championships, one suspects).
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Msconduct
User: msconduct
Date: 2010-06-01 05:40 (UTC)
Subject: (no subject)
I loved Barbara Ehrenreich's account in Bright-Sided of how not being relentlessly positive about her breast cancer made people deeply uncomfortable. Having cancer without it making you wise and spiritual seems to have about the same weight these days as having a baby using painkilling drugs: HORRIBLE FAIL. The last thing people with cancer need is Cancer: Ur Doin it Rong. It's a disease, not a course on philosophy or a test of character.
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cathshaffer
User: cathshaffer
Date: 2010-05-31 16:33 (UTC)
Subject: (no subject)
It sounds like people are asking you to make them feel better about your cancer...
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shelly_rae: Are We There Yet?
User: shelly_rae
Date: 2010-05-31 16:50 (UTC)
Subject: (no subject)
Keyword:Are We There Yet?
That's sorta how I feel about the cult of optimism. Cancer patients and survivors are supposed to make others feel better about cancer. People don't realize how exhausting that is when you're having trouble holding yourself together.
Anon
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zellandyne
User: zellandyne
Date: 2010-05-31 17:17 (UTC)
Subject: (no subject)
Back when I was still teaching comp, my class was partnered with a medical anthropology class. There were quite a few classes devoted to looking at the way we talk about cancer, and the way that it's considered a battle, using words like fighting, conquering, refusing to surrender... and how limiting and burdensome that was for people with cancer.

Ehrenreich pretty much nails it.



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zellandyne
User: zellandyne
Date: 2010-05-31 17:18 (UTC)
Subject: (no subject)
Also, thank you for writing this. It helps.
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Talekyn
User: talekyn
Date: 2010-06-01 01:02 (UTC)
Subject: (no subject)
Jay, thanks for writing this.

I remember when I was little always hearing cancer referred to only in whispers. They would not tell us kids exactly what was wrong with Aunt Connie, for instance, but just tell us she was sick. Talking to each other they'd speak in normal voices until the word "cancer," which would be whispered or unspoken. Our culture has gone the opposite direction, where cancer is now used as a metaphor for everything under the sun. The Cult of Optimism (and others who use cancer for their own points) forget that while cancer may be universal, individual people are the ones dealing with it. And everyone copes differently.

Thanks again.
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Jay Lake
User: jaylake
Date: 2010-06-01 13:47 (UTC)
Subject: (no subject)
My chemo-addled brain thinks you've been down this road, too.
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Talekyn
User: talekyn
Date: 2010-06-01 14:00 (UTC)
Subject: (no subject)
Your chemo-addled brain is correct. 2005, colon cancer.
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Jay Lake
User: jaylake
Date: 2010-06-01 14:06 (UTC)
Subject: (no subject)
So you know exactly what I'm talking about. I'm glad you're okay.

Stoopid metastasis...
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Talekyn
User: talekyn
Date: 2010-06-01 14:11 (UTC)
Subject: (no subject)
I do, although my chemo was far less debilitating than yours is.

I'm taking part in my home town's Relay For Life this Saturday, and doing a book signing. I will take a picture of the little purple figure we made with your name on it, and post it here sometime next week.
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Talekyn
User: talekyn
Date: 2010-06-01 14:12 (UTC)
Subject: (no subject)
And thanks for being glad I'm doing okay. I'm more than glad you're hanging in there and documenting the journey.
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