My Body is the Knife: Skepticism and the Reality of Medical Uncertainty

This piece was originally published in AlterNet.

The cutting edge of science is hard to accept when your body is the knife.

person asking question“If we don’t know the answer to a question, it’s better to just say, ‘We don’t know.’ And then, of course, investigate and try to find an answer. We shouldn’t jump in with an uninformed answer based on our cognitive biases. And we definitely shouldn’t assume that, because we don’t know the answer to a question, the answer is therefore God, or something else supernatural.”

Skeptics and atheists say this stuff a lot. It’s all very well and good: I totally agree. But what do you do if the question on the table is one you really need an answer to? What if the question isn’t something fairly abstract or distant, like, “Why is there something instead of nothing”? What if the question is one with an immediate, practical, non-trivial impact on your everyday life? Something like… oh, say, just for a random example, “What are my chances of getting cancer, and what should I do to prevent it and detect it early?”

Here’s what I mean. I’ll start with my own story, and get it out of the way. I recently got a presumptive diagnosis of Lynch Syndrome. This is a genetic syndrome that gives you about an 80% chance of getting colon cancer (a cancer I’ve sort of had — my last two colonoscopies found pre-cancerous adenomas which would have turned to cancer if they hadn’t been removed); a 20% – 60% risk of endometrial cancer (a cancer I definitely had, it’s the cancer I had surgery for last fall); and a somewhat increased chance of some other cancers, including an as-yet-unknown-but-possibly-as-high-as-ten-or-twenty percent chance of stomach cancer.

I say I got a presumptive diagnosis, because they didn’t actually find the genetic markers that normally point to Lynch Syndrome. But this doesn’t mean I don’t have it. According to the genetic counselor, it’s entirely possible — likely, even — that there are other genetic markers associated with Lynch Syndrome, ones that researchers don’t know about yet. And my family/ personal history of Lynch Syndrome cancers is strongly suggestive of it. It’s pretty much a textbook case of “Lynch Syndrome family history.” So we’re proceeding on the assumption that I have it… even though we don’t know for sure.

So in addition to my now-annual colonoscopies (oh, joy), we had to decide if I should get stomach endoscopies. I have an increased chance of getting stomach cancer… but my genetic counselor said there currently aren’t any agreed-upon medical guidelines on stomach endoscopies for people with Lynch Syndrome, and suggested that I consult with a gastroenterologist. So I talked to a gastroenterologist… who said that there currently aren’t any agreed-upon medical guidelines on stomach endoscopies for people with Lynch Syndrome, and that the two of us would have to make whatever decision seemed right to us, updating it as new information comes in.

You may be noticing a pattern here. Presumptive diagnosis. As yet unknown. No medical guidelines. It’s possible. It’s likely. As new information comes in. Whatever decision seems right. Proceed on the assumption, even though we don’t know for sure.

science journal coverThis is often the reality of science. There are questions that are pretty much settled: questions we hypothetically might re-visit if giant heaps of new contradictory evidence came in, but that have had an overwhelming body of evidence for decades or centuries pointing to one answer. (Questions like, “Does the Earth orbit the Sun?”) There are questions where the general broad strokes are mostly settled, but where we’re still figuring out many of the finer points. (Questions like, “What the heck is happening on the subatomic level?”) And there are questions that we’re very much in the process of answering, questions on which scientific consensus hasn’t been reached, questions for which the data that’s giving us answers is still coming in, questions we’re still making educated guesses about based on limited information, questions for which our “best educated guess” answers are changing on a yearly and even monthly basis. Questions like… oh, say, just for a random example, “How exactly do genetic factors influence people’s likelihood of getting certain kinds of cancers — and what are the best ways to address these factors to improve prevention, early detection, and treatment?”

Those of us who value science understand this. In fact, we more than understand it. We embrace it. We see it not as a weakness, but as a strength. Science isn’t a body of knowledge so much as it is a process, a method of gathering knowledge. And the way that this process self-corrects with new information is one of the main reasons it’s so jaw-droppingly successful. (If you think science isn’t jaw-droppingly successful, think for a moment about the device you’re reading this on.)

But if you’re living your life in the middle of one of those unanswered questions, this uncertainty and shifting ground can be a hard reality to take. The cutting edge of science is hard to accept when your body is the knife.

And I think this is one of the reasons many people are so skeptical of science, so dismissive of it, so ready to say, “Oh, what do those scientists know? They keep changing their minds! Last year they told us not to eat carbs, now they’re telling us carbs are okay! They can’t even make up their own minds — why should we believe anything they say?” On a practical, day-to-day basis, the cutting-edge, not-yet-answered science that most people are intensely engaged with, the one that most people deeply care about, is medicine. And the reality of uncertainty in medicine is often frightening, upsetting, depressing, and even enraging.

The cutting edges of astronomy, of botany, of quantum physics? Most people aren’t even aware of them. Their immediate effects on people’s lives don’t generally start until the science is fairly settled. Even with computer science — another science that affects our lives profoundly on a day-to-day basis — most of us don’t even touch the technology until it’s more or less hammered out.

But medicine is different. With medicine, a significant amount of research is being done on human beings. A case could be made that all medicine is research being done on human beings: medical protocols and best practices are constantly being updated and refined, even in areas that are pretty well understood. And when it comes to terminal illnesses, it would be irresponsible not to pursue uncertain, incompletely understood avenues of treatment that have highly unpredictable outcomes. If the choices are “try something that might or might not work” or “die”… well, most of the time, that’s a no-brainer. (My wife Ingrid got arrested nine times for demanding, among other things, that the FDA grasp this simple principle and shorten the research protocols for experimental AIDS drugs.)

knife-in-handIn the cutting edge of medical science, human lives are the knife.

And that can make people feel very freaking cranky about medical science.

Boy, howdy, do I understand that. I hate this uncertainty about my Lynch Syndrome. I would much rather just have the bloody diagnosis. I would much rather know for sure that I have this syndrome, instead of having to act on the assumption that I have it even when I don’t have a test result confirming it. If for no other reason: The fact that they didn’t find the genetic marker? It means that my family can’t get tested for that marker to see if they have it or not… so they now have to work with this vagueness as well, this not-very useful information that “You may or may not have a 50% chance, or a 25% chance, of having this syndrome, but we have no real way of knowing, so maybe you should be getting more frequent colonoscopies than you normally would. Or something.”

This is frustrating as hell.

But here’s the thing.

Medical science is the reason we even know about Lynch Syndrome. Medical science is the reason I’m getting colonoscopies every year instead of every five years, and am getting my pre-cancerous adenomas scooped out every year before they turn into cancer. Medical science is the reason we know that the tendency to get some cancers is heredity: it’s the reason that, even before my doctors knew anything about Lynch Syndrome specifically, they were looking at my mom’s cancer history, and insisting that I get colonoscopies early. Medical science is the reason millions of people are getting regular colonoscopies and mammograms as a standard part of their medical care, and are getting cancers and pre-cancers detected and treated early. Medical science is the reason colonoscopies and mammograms even exist. If we’d known about Lynch Syndrome forty years ago, my mom could have caught her cancer before it ate her up at age 45. It’s painful to think about that. But I can’t be sorry that the current medical science, imperfect as it is, is keeping me alive.

When I was growing up, people used to talk about finding “a cure for cancer.” As if cancer were one disease, and we were going to find one magic-bullet cure for it. I think some people are disappointed that this magic bullet hasn’t happened: that cancer is turning out to be hundreds of different diseases, and that after all these decades, after millions of dollars and millions of person-hours poured into it, cancer research is still about prevention and early detection and improved treatments and increased lifespans, much more than it is about a “cure.”

But the reality is that cancer is a much more survivable disease than it was when I was growing up. More people with cancer are getting it caught early. More people with cancer are living longer. More people are getting their cancer fully treated, and are living full lifespans and dying of something else. More people with cancer who can’t get it fully treated are living longer, and better, than they would have fifty years ago, or twenty, or even ten. More people with cancer are getting treatment that isn’t excruciating and doesn’t completely screw up their lives. More people with cancer are getting treatment that’s less excruciating, and is screwing up their lives less completely, than it would have fifty years ago, or twenty, or even ten. And some people aren’t getting cancer at all… because they’re eating their fiber, because they quit smoking or never started, because they’re getting regular colonoscopies and are getting their pre-cancerous doodads scooped out before they turn cancerous. Oncology is an imperfect, inexact science… but it’s getting better all the time. Prevention and early detection and improved treatments and increased lifespans are not trivial. Millions of people are alive today because of them. I’m one.

And I’m not going to embrace the results of the scientific process that’s keeping me alive — the messy, uncertain, unpredictable, loaded-with-false-starts, “try a hundred things with no idea which one, if any, will pan out” scientific process — and then piss all over it because it isn’t perfect.

LLS-logoGreta Christina is the 2013 Honored Hero of the Foundation Beyond Belief for the Leukemia & Lymphoma Foundation’s Light the Night Walk. To participate in the Light the Night Walk, go to the LL&S website. To participate under the Foundation Beyond Belief banner, find out how to join an existing team — or start one of your own.

Coping with Life Under a Cloud of Medical Uncertainty

question mark sign“If we don’t know the answer to a question, it’s better to just say, ‘We don’t know.’ And then, of course, investigate and try to find an answer. We shouldn’t jump in with an uninformed answer based on our cognitive biases. And we definitely shouldn’t assume that, because we don’t know the answer to a question, the answer is therefore God, or something else supernatural.”

Skeptics and atheists say this stuff a lot. It’s all very well and good: I totally agree. But what do you do if the question on the table is one you really need an answer to? What if the question isn’t something fairly abstract or distant, like, “Why is there something instead of nothing”? What if the question is one with an immediate, practical, non-trivial impact on your everyday life? Something like… oh, say, just for a random example, “What are my chances of getting cancer, and what should I do to prevent it and detect it early?”

Here’s what I mean.

*****

Thus begins my latest piece for AlterNet, Coping with Life Under a Cloud of Medical Uncertainty. Go find out more about having a “presumptive” diagnosis of a genetic syndrome that increases your odds of getting cancer; the difficulties of living with medical uncertainty; how this difficulty contributes to people’s frustration with science; and why we should embrace science anyway… read the rest of the piece. Enjoy!

God Won’t Cure Mental Illness: What’s Wrong With Rick Warren’s Sermon

rick_warren“We’re all mentally ill.”

“You have fears, you have worries, you have doubts, you have compulsions, you have attractions…”

So said Rick Warren, founder and senior pastor of the megachurch Saddleback Church and author of “The Purpose-Driven Life,” in a sermon largely about his son’s mental illness and recent suicide.

Warren was clearly trying to help de-stigmatize mental illness, and I commend that. But this is not the way. We are not, in fact, all mentally ill. And saying that we are does not de-stigmatize mental illness. It trivializes it. It contributes to the stigma. And it makes it harder to recognize and treat.

*****

Thus begins my new piece for Salon, God Won’t Cure Mental Illness. To read more about how Warren’s sermon trivializes mental illness, stigmatizes it, dismisses evidence-based treatment, and frames atheism and religious doubt as a mental disorder, read the rest of the piece. Enjoy!

Secular Meditation: “Energy,” and Attention/ Awareness

energy-perspectives-problems-prospects-michael-b-mcelroy-hardcover-cover-artSo what does this “energy” thing mean, anyway?

I don’t mean literal, physical energy. I more or less understand that. I mean “energy” in the supernatural/ metaphysical/ woo bullshit sense. And specifically, what does it mean for a meditation practice?

Here’s what I’m talking about. As regular readers know, I’ve recently begun a secular meditation/ mindfulness practice, based on the evidence-based Mindfulness Based Stress Reduction techniques. I do a few different practices, depending on where I am and how much time I have… but the core of my practice, at least for now, is something called a “body scan,” in which I focus my attention on each part of my body in turn, starting with my feet and moving up to the top of my head, noticing thoughts and distractions as they arise and acknowledging them without judgment and then gently letting them go to return my attention to the body part in question. When I first started doing the body scan practice, I basically had to say the words to myself, in my head, “Heel. Heel. Pay attention to your left heel. Heel. Okay, moving on to the big toe. Big toe. Pay attention to your big toe. Okay, that’s an interesting thought drifting into your consciousness: notice it, don’t judge it, let it go, return your attention to your big toe. Big toe. Big toe. Okay… now little toe.”

But as I get more familiar with the practice — more practiced, I guess — this has been shifting. The verbal instructions to myself are becoming less necessary. It’s becoming easier to just experience my body, to just feel it, without having to name the parts. If I’m more tired, or more stressed out, I need more of the verbal directions… but I’m needing them less and less. (In a “two steps forward, one step back” way.)

And as I get less dependent on the verbal catalog to keep me focused on my body, and become more able to just experience my body for what it is, this… thing has been happening.

Instead of controlling or directing the body scan, it’s just been happening by itself. [Read more…]

Eight Non-Believing Scientists Who Can Inspire Anyone

This piece was originally published on AlterNet. Note: When I originally posted the link to it, some people apparently misunderstood the intent of the piece, and thought it was supposed to be the eight best, or most famous, or most important, or most something else, non-believing scientists. It’s not. It’s just eight. Selected based on assorted personal criteria, some idiosyncratic, some not, and with a big heaping dose of random involved. Hope that clears things up.

It’s common knowledge — or it should be — that atheists are among the most reviled and mistrusted groups in America. We consistently come in at the bottom of polls about who Americans would vote for, who they would trust, who they want to marry into their families, who they think shares their view of how the world should be.

But it’s also the case that non-believers — not atheists as a group, but certain individual atheists and other non-believers — are among our most respected and beloved heroes. Not everyone knows that these people aren’t religious, of course… but they aren’t. And scientists are among the most admired of those heroes. Maybe it’s because scientists are more likely to be non-believers than the general population… and the more advanced in their field they are, the more true that becomes. Or maybe it’s because great scientists — American or not — embody the old-fashioned American values of exploration and curiosity, the willingness to question and the passion for truth, persistence in pursuing dreams and courage in the face of adversity. (These values aren’t uniquely American, of course — but when people gas on about the American character, these ideals do tend to turn up in the conversation.)

So here are eight non-believing scientists, whose work and lives and stories can inspire anyone — atheist, religious, or other. [Read more…]

8 Atheist and Agnostic Scientists Who Changed the World

It’s common knowledge — or it should be — that atheists are among the most reviled and mistrusted groups in America. We consistently come in at the bottom of polls about who Americans would vote for, who they would trust, who they want to marry into their families, who they think shares their view of how the world should be.

lightbulbBut it’s also the case that non-believers — not atheists as a group, but certain individual atheists and other non-believers — are among our most respected and beloved heroes. Not everyone knows that these people aren’t religious, of course… but they aren’t. And scientists are among the most admired of those heroes. Maybe it’s because scientists are more likely to be non-believers than the general population… and the more advanced in their field they are, the more true that becomes. Or maybe it’s because great scientists — American or not — embody the old-fashioned American values of exploration and curiosity, the willingness to question and the passion for truth, persistence in pursuing dreams and courage in the face of adversity. (These values aren’t uniquely American, of course — but when people gas on about the American character, these ideals do tend to turn up in the conversation.)

So here are eight non-believing or agnostic scientists, whose work and lives and stories can inspire anyone — atheist, religious, or other.

*

Thus begins my latest piece for AlterNet, 8 Atheist and Agnostic Scientists Who Changed the World. To read more, read the rest of the piece. Enjoy!

Mars!

MAAAAAARS!

I’m just sayin’, is all.

I love how crazy Twitter is going tonight. I love that people are gathering at Times Square chanting, “Science! Science! Science!” I think we needed this. Thank you, NASA. Life can suck sometimes… but today, humanity can be proud.

History, My Bum Knee, and Some People I Want to Thank

So what does a trip to the emergency room have to do with the history of science and the fight for social justice?

This whole “dislocated knee” thing has sucked, and continues to suck, and will probably suck for a little while longer. (I don’t yet know for how long: I’ll keep you posted.) But I also have to say that it hasn’t sucked nearly as badly as it could have. For most of the time, I’m fairly comfortable, and safe, and well taken care of, and even reasonably well entertained.

There are the obvious people to thank for this. Ingrid being the most important and most obvious of the obvious crowd. There’s also the friends who have been sitting with me, and helping out with practical stuff. There’s the firefighters and paramedics who got me into the ambulance and to the emergency room, with compassion and good humor and patience, and with minimal discomfort on my part. There’s the doctors and nurses and staff at the emergency room, who diagnosed me and took care of me and kept me calm, with an entirely appropriate balance of attentiveness and “Yeah, you’ll be fine, this isn’t really that big a deal” reassurance. There’s the readers who’ve been saying nice supportive things. (For the record: It does help.)

But there are two less obvious groups of people that I also want to thank.

I want to thank everyone in history who has done good, evidence-based research into medical science. I’m getting better medical care for my dislocated knee, with less pain and a faster recovery and a better long-term prognosis, than I would have twenty years ago: better still than it would have been forty years ago, or a hundred. I’m getting care that has been rigorously tested and shown to actually be effective, using careful, double-blinded, placebo-controlled, replicated studies, designed and run by people who give a damn about the truth. I owe these people, and I want to thank them.

And I want to thank everyone who, for the last several decades, has been fighting for LGBT rights and recognition. [Read more…]

Skeptical Genetics: Jen McCreight’s Talk at Skepticon 4

I’ve said it before, but I’ll say it again: Jen McCreight (of BlagHag fame) is one of the best speakers we have in this movement. She’s not a slamming powerhouse of swelling oratory: she’s just really clear, chatty, friendly, funny, approachable, and excellent at conveying complicated ideas clearly without talking down to her audience. I will hear her speak anytime — even if it’s on a topic I’ve heard her speak on before.

Her talk at Skepticon 4 was no exception. It’s sort of a Genetics 101 for a lay audience, with a focus on common misconceptions about genetics and dumb ways genetics get portrayed in news media and pop culture. If you want to know about this stuff but are daunted by dry or forbidding texts, this would be an excellent way to start. Enjoy!