Life as an Extreme Sport

You Should Watch This SCOTUS Case, Just in Case Your Skin Sloughs Off

...and everything else, Bioethics, Writing

We’ve all been in the situation where we do something – crash a bike, step wrong on thawing ground, trip over a damnedbeloved pet – that leaves us with a painful injury that doesn’t go away. And when that happens, we go to the doctor to verify we’re not badly injured, and possibly pick up some anti-inflammatories. For most of us, when this happens, our skin won’t slough off, we won’t end up in a burn unit for treatment, and we won’t be in a medically induced coma for months.

Most of us aren’t Karen Bartlett, who suffered a rare side effect of NSAIDs when she took sulindac: toxic epidermal necrolysis. Aside from the extreme trauma of seeing your skin shed off you like wet tissue, Ms. Bartlett suffered permanent damage to her esophagus and lungs, and was left legally blind.

Rather understandably, Ms. Bartlett sued the manufacturer of sulindac, Mutual Pharmaceutical Company, the manufacturer of the generic formulation she took. She argued the drug design was defective and dangerous, and she won both the case and the appeal. Mutual Pharmaceutical Company, apparently attempting to live up to the reputation of pharmaceutical companies everywhere, has continued to appeal the decision against them, and this month the Supreme Court of the United States will hear the case.

At crux, Mutual Pharmaceutical Company is arguing that because they have no control over the design of the drug, they are not liable for any injuries sustained from taking it; they say this is the same as a recent SCOTUS ruling that does not allow patients to sue generic manufacturers for warning labels, as the company has no control over that information.

The problem I have with this argument is that we know that this is patently false. In October of 2012, the FDA removed approval of Budeprion XL 300, a generic version of Wellbutrin XL 300 manufactured by Impax and marketed by Teva. Why? Because their formulation was not therapeutically equivalent, and likely never had been.

The Impax/Teva Budeprion XL 300 was approved in December 2006; given that 80% of prescriptions filled in the United States are generic, it’s safe to say that quite a few generic prescriptions for Wellbutrin XL 300 were filled in that time. Almost immediately, the FDA began receiving reports that the generic form of the drug was not therapeutically equivalent; patients experienced reduced efficacy. Reduced efficacy is a polite way of saying that patients, many of whom were severely depressed, weren’t receiving any benefit from taking the drug, something I think we would all agree is a harm. And yet patients were taking this ineffective drug for six years, because the FDA was unable to quickly move to investigate the bioequivalence of Budeprion XL 300 to Wellbutri XL 300.

Clearly, generic manufacturers have the ability to change formulations, whether they should or it’s legal aside.

Generic manufacturers say that allowing juries to award damages to patients harmed by generics trumps the authority of the FDA, and the FDA is grudgingly siding with manufacturers on this. The problem here is that this argument presumes two things:

  1. that the FDA always has all information regarding a pharmaceutical, something that Vioxx alone clearly indicates isn’t true;If you want to read more about pharma behaving badly, hiding clinical trial results, etc, check out Carl Elliott’s White Coat Black Hat and Ben Goldacre’s Bad Pharma.
  2. that the FDA has the ability to move quickly to protect patients, something the Budeprion XL 300 example shows is not the case.

Lawsuits are one of the few ways it seems that patients have any ability to advocate for themselves – and, as Ms. Bartlett’s lawyer notes, force pharmaceutical companies to reveal information that they often take effort to squelch. Hopefully SCOTUS recognizes both the limitations of the FDA and the need to give patients a venue wherein they can hold manufacturers accountable for damages inflicted by the product they produce.

Blaming the Victim in Domestic Violence

...and everything else

I almost never use the very outdated and almost meaningless phrase “trigger warning” on posts. But in this case, I’m making an exception, because my own reaction to Sara Naomi Lewkowicz’s photography and accompanying narrative was nausea to the point I thought I was going to vomit. If discussions or depictions of domestic violence disturb you, consider this your warning before reading further or clicking on the various links below.

Never read the comments. It’s an internet truism, at this point; I don’t know a single person who reads comments on unmoderated posts. And yet, sometimes, it’s hard to escape the comments, especially when the comments become the story.

Last week, the comments became the story, as Salon wrote about the internet blaming a photographer, an abused woman, apparently everyone possible except the abuser, for an incidence of domestic violence caught on film. Time reposted the photo series, originally made public in December, partly in response to Congress delaying VAWA, and the internet erupted. I’ve been a bit busy and distracted lately, so didn’t see the furor until about 30 minutes ago.

I started to scan the Salon article, shook my head at the proof one should never read comments, and clicked over to the Time article to see the photo essay. Within just a few clicks, I could see what was coming based on body language. And in just a few more, the documentation of abuse started and, to my shock, I felt bile rise in my throat as my stomach flipped and then flipped again.

“That was me, that was me, that was me,” whispers in my head, louder and louder, keeping time with the heartbeat I’m suddenly so aware of, the waves and swells of nausea as I cannot look away. I click through further, seeing Maggie thrown against a counter and for a minute everything swims and it’s not Maggie being thrown, it’s me, down a hall, against a wall, to the ground.

Clicking, clicking, and the officer is photographing Maggie’s bruises. The doctor is examining my knee, avoiding eye contact, ignoring the finger-shaped bruises on my shoulders.

“They never stop. They usually stop when they kill you,” the responding officer tells Maggie, trying to coax a statement out of her. At this point, the tears come – the gratitude that Maggie got a response I never did: someone called the police, and more importantly, the police took the steps necessary to reach Maggie, protect Maggie, get her out of that situation before it escalated further.

It escalates so, so much further.

The rhetoric with police departments has changed, and for the better. But for some reason, social rhetoric hasn’t changed, hasn’t kept up. Congress had to debate whether or not VAWA should be renewed, even though we know that one in every four women will experience domestic violence in her lifetime, and that most cases of domestic violence are not reported to the police because women don’t believe they will be believed, that the police can do anything to protect or help them, or that they have any other choice in life.http://www.ncadv.org/files/DomesticViolenceFactSheet(National).pdf A third of female homicide victims were killed by intimate partners; in almost 80% of intimate partner homicides, regardless of who was killed, the man abused the woman before the murder.

I am in that one in four statistic. I was almost in that one-third statistic. The internet commenters would say that I deserved it – but no one deserves abuse. The internet commenters would say that I stayed because I liked it – but consensual BDSM is not the same as abuse. The internet commenters would say that I should have seen it coming, that it was my fault, that I made him do it, that if I wasn’t such a bad person,…

The internet repeats the words of abuse used by abusers, continuing to victimize those who have already been abused.

Most pervasively, there is this idea that you were abused because you did something to deserve it. Maggie deserved it for seeing someone while she was separated from her husband; I deserved it because he was older; Maggie deserved it because she had two children by the time she was 19; I deserved it because I left high school early; Maggie deserved it because she was poor; I deserved it because I didn’t live with my parents; Maggie deserved it because of all the reasons people try to use to justify abuse rather than confront the idea that people can and do abuse. People try to justify it to escape the idea that they could abuse someone, that someone they know could be abused. Not them, not me, not us.

Which is why, as much as I feel nauseated, as much as I want to run to the restroom and throw up, I think it’s important to stand up and be counted, to say “yes, her; yes, him; yes, me.”

When we judge those who are abused, who stay with their abusers, like Rihanna, we do more than just comment on figures who have made their lives public, by choice or celebrity. We comment to those one in four women around us, the ones whose bruises are hidden, whose abuse doesn’t leave a visible mark, and we devalue and degrade and ultimately dismiss their experience. We continue to create a society where escape is hard, and asking for help is harder. Where it is easier to face the idea of dying at the hands of the person who theoretically loves you than it is admit you didn’t just trip and fall because you’re just so damned clumsy.

There’s no quippy way to end this. I’ve sat here watching the blinking cursor hoping for inspiration, hoping for some way to sum up the idea of not being the kind of people who make those comments that continue to perpetuate a culture that accepts violence against women. Some creative turn of phrase to say stand up, don’t tolerate that kind of language amongst your friends, do your best to be the kind of person like Salon’s Jina Moore, or the unnamed police officer who convinced Maggie that her life was in danger and she needed to get out. But there’s no quippy way to write off the very real reality of abuse and death in America.

If you need help, please call the National Domestic Violence Hotline at 1-800-799-7233.

Broken Buddhas

a-musing, Buddhism

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For Nicholas.

I, as you most likely know, am a Buddhist. I am a very bad Buddhist: I drink, swear like a sailor, and until recently was a very happy ethical omnivore. I make my amends, though, and one way I do that is through routine meditation practice. As an offshoot of that, I have a lot of boddhisatva statues around my house. They’ve been on my mind lately – probably because, in the recent CLEAN ALL THE THINGS push, I’ve handled each of them to wash, dust, and reposition them.

From where I’m sitting on my bed, I can actually see four statues: a Green Tara, a Kuan Yin, a weeping Buddha and my yard gnome Buddha.So named because I found him as garden statuary in a garden store. There are at least another two Buddhas in other areas of my home. And what struck me about them is that they all, with the exception of the weeping Buddha, are broken.

The Green Tara on my nightstand is missing a lotus and what looks like a naga. The Kuan Yin in my bathroom is missing a hand. Another is missing lotus petals. My yard gnome Buddha is probably the best example of this, though: during a move, many moves ago, he tipped out of the chair he was being carried in and the back of his head shattered across the ground. Concrete meeting concrete is never a pretty thing.

It was my ex-husband who dropped the yard gnome Buddha, and I very distinctly remember him bracing for what must have seemed like the inevitable explosion. That I stood there thinking for a moment, and then laughed, was certainly not the expected response.

Looking back on it, it was one of those moments. Everything slowed to a crawl as I watched the Buddha tip over and shatter, and then there was a bit of a sideways shift while practice clicked and tumbled in to place. The yard gnome Buddha became, in one swan dive, a very nice, very literal embodiment of non-attachment.

I’d like to say that since then I’ve reached some serene, zen-like state, closer to enlightenment, but the reality is I have my good days and the bad. I’d also like to claim that having a set of largely broken Buddhas decorating my house was an intentional choice, but instead it is more serendipitous. A reminder about how messy life is, and how broken we each are, and that life is often about finding the beauty in the broken, and the people whose shards match your own.

The Problem with Highlighting Beauty Along with Brains

...and everything else, Writing

So apparently Business Insider thought that they would do the world a solid and highlight the fact that scientists can be attractive, sexy people, too. It seems the idea that there can be more to being a scientist than a messy-haired, lab-coat-wearing dweeb is not only newsworthy, but list-worthy.

Now, on the one hand, in a world where the People’s Sexiest list generates dialog for weeks, I can see why someone would think that the same should be done for scientists. And the other hand really appreciates the fact that the list was split 50/50, male and female. In the past, a list like this would have been invariably dominated by women; equal opportunity oogling FTW.

But the gripping hand. Oh, that gripping hand.

Business Insider is trying to cast this list of sexy scientists as some sort of outreach list – people who are sexy, who make science sexy. The problem is, it’s alienating as fuck. Suddenly, there’s one more area of life to be judged by looks rather than anything else, and for many people, especially many women, science has been a refuge where brains are what matter (or at least what matter first). Unlike many areas of life, in science, what you can do matters more than how you look.

Speaking from experience, starting at a young age, girls are pressured to conform to social norms about weight and appearance. I remember this vividly because I was always tall for my age, I am a natural blonde, and I hit menarche and puberty years before most of my classmates.“Amazon” was the politer name I was called. “Bazoonga Boobs” was much less polite, and sadly more common. I don’t recommend hitting bra size DD when you’re 12. It was, in a word, hell. “You could be so pretty if” coupled with being different than my peers; kids are kids and they were vicious and cruel. My refuge, the place where what I looked like didn’t matter, was the science and computer lab, where my brain could run wild and free and I was judged based on how I thought and nothing else. I was judged based on what I could control, because I could learn the scientific method, I could research and I could form hypotheses; I could experiment and importantly, I could stretch my mind in a zone where my height just meant I could reach the top shelf of chemicals, where all that mattered about my hair was that it was pulled back, and what I wore and even what my body looked like was hidden by a white lab coat.

And I can imagine how I would have felt, at 12 years of age, had I come across a list like this, because I still feel twinges of it now, regardless of largely having shaken off cultural conditioning over the years. The women are so pretty, so successful, (so much younger!). Something I can never be. So why bother? Why bother at all, when brain is being judged in conjunction with body against an ideal I could only achieve through surgery (and how nice for people commenting on the Business Insider piece to note that’s an option).

We already know that low self-esteem negatively harms teen girls, and we’re starting to see more acknowledgement of how this damages teen boys, as well. Science, at least for the people I associated with (and still do associate with) was a refuge from the pressures and a place where our self-esteem could flourish, and we could be proud of ourselves for our achievements, not our ability to be the culturally-sanctioned right shape and size for our gender.

While I believe that Business Insider had at least some decent motive, in attempting to show that scientists can be “all kinds of people,” by only focusing on the exact opposite of the “dweeb scientist” image, the article only serves to spread the toxic notion that beauty is an important criteria for evaluating a person.

As Jacquelyn Gill ”so succinctly noted on Twitter, “Highlighting “sexy” scientists doesn’t make science more accessible, interesting or relevant. It [merely] fetishizes some scientists as curiosity.”

Beginner’s Mind, Writing, and Time to Fail

...and everything else, Writing

I was expressing my general frustration with myself on Twitter this morning, noting that I wished I could take a master class in pitching from one of the writers/editors that I quite admire and like. One of them, Bora Zivkovic, picked up the conversation and talked about writing a post on what he’s looking for at the SciAm Guest Blogs, which is admittedly a different beast than pitching to magazines (let alone paid sources). He also linked me to The Open Notebook, which is a URL that Leigh Turner actually passed on a while back — something I both acknowledged on Twitter and then joked about, saying that I need to just carve out some time to fail.

That concept, though, struck me.Obviously, as I’m now nattering on about it here. Failure isn’t really something we celebrate, or even much encourage in society — and within both academia and writing, failure might as well be a four letter word. Maybe I feel this more acutely due to a variety of pressures, including frequently being labeled “one of the smart kids who’ll figure it out on her own” and the pervasive sense of impostor syndromeI know, I know, post-SciO13 post coming. stemming from the fact that I managed to fall into semi-professional writing without having to learn the ropes. But a lot of the process is opaque to me — while I seem decent at the first steps of networking, moving beyond that to the selling self point? No clue. (And there is some irony here, in that I’m really very good at connecting other people together. Perhaps I should ditch aspirations of writing and instead become an agent.) And more than the process being opaque, I’m not even sure who to ask to make it less — and the advice I have received has been quite similar to school: “oh you’re smart, you’ll figure it out.”

We could quibble all day over the first statement, so won’t — but there is pressure within the second half, the “you’ll figure it out.” Why? In some ways, it feels like it takes away the safety net of failure. The presumption — at least how I read it — is that this thing I’m wondering about, be it pitching or anything else, is so simple that I should have no problems figuring it out, and therefore I cannot fail. Since I’m not a surgeon or in some other lives-depend-on-me profession, the notion of not being able to fail is rather silly, but the idea that I cannot is, in itself, paralyzing.

And this isn’t the first time I’ve encountered it, and I’ve heard from friends in the humanities, social and “hard” sciences who’ve had the same experience. Their PI or advisor tells them to take care of X, it’s so simple — one friend was told that a chemistry lab was so simple a monkey could do it. And he sat in the lab for several days, unable to decipher what he needed to do, but terrified to ask for help because he should be smarter than a monkey.

I wonder what we’re losing, by not giving ourselves — especially those of us just starting out — the chance to fail, and learn from those failures? I remember that being a common mantra from my mother when I was growing up: try. If you don’t succeed, try again. Learn from your mistakes. At some point, though, the idea of learning from mistakes dropped away and was replaced with the idea that there simply cannot be mistakes.

One of the most important concepts in Buddhism is that of beginner’s mind, perhaps best summed up by the quote that “in the beginner’s mind there are many possibilities, but in the expert’s there are few.”Shunryu Suzuki’s Zen Mind, Beginner’s Mind. This concept basically says that you should always remain open to the world, eager and without preconceptions, as a novice would be, rather than live within the world of expectations and boundaries that come when you are an expert. Children are the best examples of beginner’s mind, because they explore the world with an openness and creativity that isn’t bound up in fear of failure or acknowledgement of limitations.

My initial reply to Bora, that I just need to carve out some time to fail, was a joke, but the more I think about it the more I realize that it’s true. I need to carve out that time to try new things, and to fail and be rejected, to apply beginner’s mind beyond the meditation cushion and give myself permission to not be perfect on the first try, but instead learn from those experiences, dust myself off, and try (try) again.