January 15th, 2013


[links] Link salad keeps trying to find its footing

The Acts of Whimsy cancer fundraiser and the Lakeside Kickstarter for the documentary about me, [info]the_child, and cancer are still live. Both have made goal, but additional support is always welcome. Please check them out if you have not done so yet.

Skiffy and Fanty with a random Act of Whimsy on my behalf.

Sex Operator Cards Against Humanity — Rebecca Blain with an Act of Whinsy pace Mary Robinette.

PolarBearSwim — Rick Novy commits an Act of, well, something, in support.

Creative genius and science[info]mckitterick with a fascinating post, including a recording of the oldest documented piece of music in the world.

CephalophoreA cephalophore (from the Greek for "head-carrier") is a saint who is generally depicted carrying his or her own head. I hate it when that happens. (Via Daily Idioms, Annotated.)

PaperTab: A Tablet As Flexible As Paper Debuts At CES 2013 — Not quite fully baked, but still cool as heck. (Via David Goldman.)

Ancient migration: Genes link Australia with India

Chimpanzees possess sense of fairness akin to humans — Much like reality itself, even nature has a liberal bias.

The Airplane’s InfancyBy 1913 we’d learned how to fly. Now came the hard part—designing flying machines that were safe and reliable. A view of aeronautics from 100 years ago.

25 Places That Look Not Normal, But Are Actually Real — (Via Lisa Costello.)

The Weathermen Don’t Know Which Way the Wind’s BlowingFour in 5 Americans believe in global warming–but nearly half of local weather reporters don’t. Believing in global warming is like believing in tomatoes or gravity. Global warming denialism has as much intellectual credibility as tomato denialism or gravity denialism. All of those phenomena are pieces of evidence-based reality, regardless of your opinion or ideology. But weathermen? Really?

Summer Down Under — Heat-related photos from Australia, which is having a nastily record-breaking summer. Warning: Some of these might be triggery. Good thing climate change is a liberal hoax, otherwise there might be something to worry about. (Via [info]tillyjane, a/k/a my mom.)

Debunking the Denial: “16 Years of No Global Warming” — A well constructed, ideologically confirming lie can outperform the facts for a long time if people are sufficiently enthusiastic in their willful ignorance.

Little-known laws shed light on NRA influence — The gun culture is as pervasive as it is destructive.

The Hitler gun control lieGun rights activists who cite the dictator as a reason against gun control have their history dangerously wrong. Like pretty much all contemporary American conservatives, gun rights advocates prefer their beautiful minds blissfully untroubled by so-called "facts".

More Guns, Less Crime: The Switzerland Example — Ta-Nehisi Coates on why the gun culture in Switzerland is actually nothing like what a American gun enthusiasts like to pretend it is. Once again, those liberal "facts" don't align at all with cherished conservative beliefs. Quel surprise.

I Wish That I Knew What It’s Like to Be Free — More crazy conservative gun culture shit. (Referred from [info]reynardo.)

Colin Powell blasts GOP’s “dark vein of intolerance” — This would be the same Colin Powell who knowingly lied to the US and the UN about Iraq's alleged WMDs? Even though I appreciate his newfound message (a few years too late, sir, given what a much bigger difference you could have made back in the day), Powell permanently trashed his credibility with the Iraq lies.

?otD: What do you do when your deck is burning?

Writing time yesterday: 0.0 hours (stress)
Hours slept: 6.25 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: n/a (forgot to weigh)
Number of FEMA troops on my block enforcing disability rights: 0
Currently reading: The Hydrogen Sonata by Iain M. Banks


[personal|cancer] Hope and despair

Yesterday was a particularly challenging day for reasons only tangentially connected to my cancer. Tomorrow I see my surgical oncologist, the pre-operative nurse practitioner for screening, and my therapist. (That makes for a half sick day from work right there.) Today I am in what will hopefully be a trough among the cavalcade of stress and woe.

One bright spot on yesterday was spending an hour with my dad over coffee. (Well, soda for him and hot chocolate for me, but the principle remains the same.) We don't actually have a lot of one-on-one time, he and I, because I'm usually with [info]the_child and/or Lisa Costello, and he is usually with my (step)mom. We talked a lot about the Acts of Whimsy fundraiser, and my forthcoming surgery, and the current state of affairs in the extended family.

Then he brought up my recent sharp negativity. Dad is a retired U.S. ambassador and a former Deputy Assistant Secretary of State [ wikipedia ], and is extremely diplomatic in both the metaphorical and literal senses of the term. He is careful how he phrases his thoughts, and he was very careful with me, saying that he and Mom were concerned about how upset I've been since the news of Ashcroft, my fourth tumor, broke. As the current family issues erupted about the same time, I have been emotionally and logistically overwhelmed literally every day for this past week and a half. (Keen-eyed observers of my blog may have noted zero writing time during what should have been my main writing window during this surgery break.)

If you know me at all, think about that. I'm so stressed out I can't write, even though I'm no longer subjected to chemo-induced writer's block. In over a decade of being a professional writer, I've never had writer's block in the usual sense for more than a two or three days in a row. Until now.

My despair is showing through. In ways that are alarming my family. In ways that are probably undermining my own treatment course. Lisa Costello and I have spent time discussing this quite frankly. My therapist is very concerned. What I've said to both of them is that my day-to-day life is still a joy to me, but my sense of the future has retreated to a deep and profound negativity.

Even the amazing response to the Acts of Whimsy fundraiser hasn't been enough to shake me out of this emotional pall.

Over the past few years, hope has been frankly poisonous to me. Every time I've started to have serious hope, I've been shot down by another round of cancer, another round of bad news, to the point where even proudly logical me has become immersed in that species of magical thinking that says, "If you hope, you'll just lose what you hope for, so better to despair and have the potential to be pleasantly surprised, than to hope and be shot down yet again." I can only stand to have my head pounded into the metaphorical concrete so many times, and I'm past my limit.

One of my longtime (i.e., pre-cancer) coping strategies for stressful events and situations is to "run to the edge". In other words, I visualize what the worst possible outcome could be, and work backwards from there. This generally worked for me, because things rarely if ever came to the worst, and it allowed me to be pleasantly surprised even by relatively difficult outcomes. Under this rubric, if no one died or went to jail, I was doing okay.

The problem with applying that strategy to my cancer experience is that I have on a number of occasions experienced outcomes that were even more terrible than my envisioned worst possible outcome. The coping strategy has failed me through a combination of insufficient imagination on my part and overwhelming medical setbacks. I've painted myself into a corner.

Oncology is infested with what Barbara Ehrenreich calls "the cult of optimism". The reality is that cancer sucks, and half the people who are diagnosed will die of it, many of them prematurely. (Bear in mind this includes all those relatively minor skin cancers that get zapped or frozen off in dermatologists' offices every day — I don't know the statistics for cancers internal to the body, but they are obviously much worse when you factor out melanomas and whatnot.) Yes, treatment outcomes in any area of medicine vary according to patient attitude, but as far as I can tell, this has a lot more to do with being an attentive, proactive patient who follows their treatment courses carefully and shares information with their doctor than it does with being a happy warrior.

While I am a very, very unhappy warrior, I am also a very proactive and engaged patient. Almost certainly annoyingly so, from my oncologists' perspective. Though they are very professional about dealing with me, this is my life.

Right now, I'm really not capable of hope. Not in a large scale sense. If the whole genome sequencing of my tumor produces a new treatment direction, that may change. Otherwise, the trend of my illness is sharply unfavorable to me making any long term plans.

My despair, however, is poisoning the people around me. So apparently I must now put on my happy face for the sake of the people who love me, and whom I love. I'm not good at living lies, which at the moment this absolutely will be. But I'm not comfortable with the social aspects of my illness, either. No matter which way I turn, I'm doing something wrong.

It's a hell of a trap. Fuck cancer.