Life as an Extreme Sport

Code Grey [August 08]

I feel like I knew that Bob’s prof’s were the folks comprising the Harvard Ad Hoc Committee on Death, but I blinked a few times when I heard it, anyhow. Sometimes it’s hard to remember that history is only as distant as our own memories; what is intangible history for me is Bob’s graduate days. It’s an odd sensation — and another reason why I think that Glenn is wrong when he says we have no lineage, rooted history. Perhaps he doesn’t, because he’s one of the people who’ll be the father-philosopher’s of the field, as is Bob, Art, and so forth. But for me, the, what – third generation? Fourth, perhaps? I have lineage, and it is found within these larger than life names that are suddenly grounded for me here, in Albany.

That said, and though I have several things I’d like to write about today, the first thing I want to bounce about, to glee about, is something that probably seems to silly, so prosaic. But I got my AMC ID today, and with it came an emergency code card (though I’ll note, as I told my friends, and as a Grey’s Anatomy joke, there’s no code black…). For some reason, for all my time in hospitals, and in all the roles I’ve had, I’ve always been jealous of that code card. It seemed like a mysterious world of knowing what was being said on the loudspeaker, some secret world to be initiated into. So, after getting my parking pass and walking back to Security to grab my bag, to be handed an ID that included a code card felt like I actually had crossed some line, from the side of sometimes volunteer or patient or student in a hospital so large that they never ventured out of the research wing and never needed an ID, to something more tangible, more real — an attitude I admit it is, when you think about it, silly. Yet, there it is, the reaction I had to a simple piece of paper. I suspect Sue would talk about tangible artifacts of cultural meanings…

In today’s lecture, Bob talked more on the Hippocratic Oath, moving to the question of full moral standing, and who has it. Rather naturally, I thought of Mary Ann Warren, and Sara (Goering)’s class on moral issues of life and death (framed around Peter Singer’s arguments, but an interesting way to be introduced to various positions). Anyhow, in talking about moral standing, Bob made the statement that defining death has a little to do with biology and a lot to do with morality. He then went on to explicate the moral positions of cardiac, whole brain, and higher brain death. But in introducing this rather, in my eyes, provocative turn on the subject — that death is a construct, and it’s a construct that exists so that we can both define life, and define moral agency, standing, ability and responsibility — Bob yanked our attention over to a very common phrase: oh, he was clinically dead, but we brought him back to life. Well, no, says Bob, he obviously wasn’t clinically dead, since the definition of such is an irreversible loss of function; if you were able to resuscitate someone, then they did not irreversibly lose function, and ergo are not dead . Thus, we should limit death to functional loss, where you cannot be brought back — there are too many issues with the vagueness around the language of death. I will admit, this is a charge I’ve heard a lot; at one point, knowing when someone was dead was easy, and now it is one of the hardest things to know.

Apparently Jersey is a really interesting place for ethics — Quinlan, of course, but on top of that the law recognizes that some religions look at death differently, and Jersey has no requirement that every person use the same definition as medical norm. There are some specific exceptions in line for people with religious beliefs, which seems rather enlightened. Perhaps we can hope other states will export such a view…

The idea of ventilating corpses, something that happens daily in hospitals all over the country, is creepy. There’s really no other word for it; it brings to mind the idea of a Robin Cook novel, and the ventilated corpses are really being used for some malicious reason; they’re being harvested for organs (Coma, by Robin Cook) or maybe used as batteries to run large cities (rather Matrix-y), or even as incubators for… well, babies of our own, or maybe alien babies or bacteria (reminiscent of Battlestar Galactica and the farms on Caprica). Legally and technically, there is a big difference between pronouncing death and ventilating a cadaver, and ventilating a person who is brain dead, including the very basic one of insurance, not to mention the language itself — labeling carries power. But I think that my brain will forever have the image of some pseudo-futuristic, science fiction/horror world with ventilated cadavers looming ominously in the background.

Sue showed us the end of her illustrative B-movie today. I’m very disappointed I didn’t catch the full cultural script; I was too enmeshed in my own timeline, and didn’t consider the quite most obvious option! After all, the idea was not the redemption of the family and potential for good, rather than inherent bad running in families, but redeeming the girl; obviously adoption is the clear way to redeem her while still condemning her “family”. Some of the quotes from the movie are great:

We can make an occasional mistake — the benefit is so great! (Really? Where do we sign people up for being made mistake on?)

This is for the good of the public at large! (Presuming your public is white, middle class America, mainly men…)

This segment was interesting, but mostly repeat for me. I had a full class where I focused on Cold Springs Harbor and their eugenics database, crawling through and reading and marveling at the attitude of people so recently ago and so different from my own world. And of course, people from that era are still alive and kickin’, even if they weren’t born ‘til decades later. So seeing the view is probably worthwhile. But anyhow! Eugenics fear, more than anything else, I think is what has pushed for the ELSI budget allocated by the Human Genome Project to begin with. Which comes back to the culture idea, and culture pushing/pulling our public policy.

I meant to look up the CNN report on the German doctor claiming he could vaccinate against stupidity, but we weren’t in an internet capable room at the time, and the whole exhaustion/falling over when I get home thing/no energy to find internet outside of school thing prevented me. Still, the idea of a vaccination against stupidity… do you suppose, should that actually be true (which I so strongly doubt, I won’t even bother to underline it, I’ll simply trust you’re with me on this one), that we would simply redefine what stupidity is? It’s a rather Harrison Bergeron-esque argument, only instead of keeping everyone at average, it demands that in order for there to be average, there must be exceptional and less than. Won’t we always create a less than exceptional?

It seems to me there must be some level of irony that the intent of the Eugenics Record Office was, in part, an attempt to work as a marriage record office, allowing people to make the most fortuitous marriages. After all, don’t we have databases today that are the same basic premise — allow people to verify that their progeny will be healthy?

Then again, I’m the person who saw the photo of immigrants at Ellis Island, under an American flag, and instantly thought of Nazi Germany rally pictures. I might not be the best mindframe to see neutrality and irony.

Homesick for the first time

I’m homesick, today, for the first time. Which given that I left Seattle in June, and have been on my own a week, isn’t so bad, I guess. What’s probably silly is what I’m homesick for, or rather, whom. I’m homesick for Phillip. I haven’t talked to him since graduation; he was gone, and I’m sure he’s taking a breather this summer from, well, life and me and everything else. But that’s going on three months, and I miss him.

I miss knowing mannerisms, and speech patterns, and gestures and when he was raising his voice for effect, and when he meant it.

I miss knowing where I belonged and stood and what my role was. Knowing my place.

I miss knowing the rules.

I’ll get that here, I know that. But until I get that, I have to deal with different egos and people and small sniping amongst them, and attitudes that are very different than what I am familiar with. I have to deal with a level of politics unprecedented, for me – I guess maybe I miss just having Phillip’s ego, and occasionally John, and no one else.

Or maybe most specifically, I just miss feeling somewhere safe. I have to decide who to trust, what to trust, who to listen to – so many things that I’ve forgotten about. Do I go with my instinct? Do I listen to people? What circumstances do I take to heart, and what do I ignore? Which way is up, and where is down?

Right now, I want to be curled in the corner of the CHID couch, quietly reading the latest issue of whatever, listening to the voices of the department and office swell and swirl around me, Phillip’s laughter a constant anchor in the background.

Love at First Lecture?

I was late this morning; I got lost. Twice. Once in getting to Union itself — I took the wrong exit on 90 — and then on the Union campus, trying to find Olin. As a result, I walked into Glenn’s lecture almost 20 minutes late (although thankfully the clock was off, so only thought I was 10 minutes over the start). This, I thought, was an awful omen. Here I was, traipsing in late to the first lecture by the editor of AJOB, the guy who runs AMBI, the person coordinating the program that, I’m getting the idea, I’m one of the few people in. So, in other words, someone who’ll know me, probably pretty well, by the time this is all over.

And by this all being over, I mean the ProSeminar.

Not an auspicious start. I wonder if Mercury is in retrograde. Not something I believe in, but at times a convenient excuse. Something’s throwing off my innate mapping skills, anyhow.
So I get to my seat, I sit down and unpack, Glenn thankfully not singling me and my clicky heels out. And then I look up and see that Jon Stewart, in Daily Show getup, is staring at me from a large projection screen. Oh crap. Not only am I late to the first day of lecture, but I missed him using not just pop culture, but icon Jon Stewart, in his lecture. Me, the girl who’s used pop culture to teach multiple classes, missing this. Can I just commit seppuku and get it over with?
Thankfully, my beating myself up ended pretty quickly, largely because Glenn is So. Damned. Engaging. He’s Phillip (my former adviser and mentor) in energy, but he has the satire and sense of humour of a Daily Show correspondent, and talks about my passions. I quickly sank into the GlennZone, and forgot about my self-deprecation.

Then, it got even better, as Glenn introduced Jon Stewart, and I got to see my two favourite satirists take a poke at The White House, Bill Frist, the Schiavo fiasco, and ethicists in general. I was laughing, hard, and merriment wiped away the last of my stress.

I took copious notes while Glenn spoke, a lot of what I was thinking, but also what he was saying. Especially the particularly quotable bits, although he might prefer they not make their way into my sig file!

The idea of codes and oaths, and the idea of good being unbreakably linked to excellence is an interesting idea; that you cannot parse them individually. A good surgeon is a surgeon who does not remove the wrong organs. To then take this goodness and link to ethics, though, I wonder? Can you be ethical if you’re bad at it? Well, can’t you be ethical, but incompetent? To have the good intent, but the bad skill? Is a medical student unethical because they are unpracticed? I’m not sold on the idea.

I do think it would be unethical to continue practicing if you routinely made mistakes, never improved, and so forth, but there has to be room for ethical behaviour and improvement, learning!

I’m also not sold on the idea that bioethics is ahistoric, not rooted in any solid ground. While ethical codes are subject to what seems like pretty constant revision right now, is this really bad? Isn’t this the sign of a new and healthy field, one that’s living rather than stagnating? And is it truly unrooted and ahistoric, without lineage? Wouldn’t it be more accurate to portray the field as a rhizomatic tree, with multiple branches? Or maybe more accurately, a hybrid tree, one where several different grafts form the whole? Apples and oranges… Glenn did say we’re all hybrid weirdos, a label that applies so appropriately to me and my CHID background.

I don’t come from a straight philosophy background, although I’m strongly rooted in phenomenology, so I suppose the idea of a lack of lineage strikes me as strange. My lineage comes through Phillip, and the history and philosophy of science. It comes through Sara and Denise and Al Jonsen and Nancy Jecker, major thinkers in the field, and my ‘doctor father’. (Although really, only Phillip took that particular role — everyone else would be more big sister/brother/aunt/uncle. I suppose Al could be doctor grandfather…) My background also contains a strong teaching component, something I hope to not lose. I taught for two years, and I loved it — it’s one of the things that propelled me to a PhD program, and not just a Masters. It may well be that Philosophy doesn’t prepare people to teach, but I’d like to ignore that and teach anyhow…

We had to talk about Schiavo, something I’m still making peace with. Phillip had wanted me to use Schiavo in my thesis, to which I eventually bowed and did, but it felt like, pardon the expression, kicking a dead horse. But, as Sue noted later in the day, it’s a case where you can simply say “Schiavo” and everyone knows what you’re talking about. It’s not a secular script, per se, but it is a secular story that has engrained itself in a particular cultural time, and contrary to what Glenn said, it is funny to suggest that if you don’t know the particulars of Schiavo, you must be sleeping.

In talking about Schiavo, I was pretty gratified to know about the case and be comfortable talking about it — I’m sure I’m not the only one who knew what her gravestone date of death said, although I didn’t want to mention the third, “laid to rest” line just in case that was showing off… It did, however, make me feel more like I belong here. That I have some knowledge, and am not an imposter hiding in the clothing of someone clued in.

Glenn also mentioned something I’d not thought of, and I find very interesting. Is it torture to keep her alive, if she is not there? If the TerriEssence is gone, never to return, is it truly torture? What are you torturing? A biological hulk that is acting on instinct? Can she truly suffer, if there’s no she? As I mentioned on Blackboard, Eric Cassell says there is a difference between suffering and pain, and that difference is drawn at whether or not you can anticipate future pain — something that requires a sense of self, a consciousness. An essence, a soul. If there is not that essence, then there is no time telling ability, there is no ability to suffer.
That is not to say, however, that there is also no pain. Pain is a simple response of the nociceptive system, it doesn’t require serious levels of thought or consciousness. A sea anemone feels pain; although this is feeling in a touch/pressure sense, an affective sense that does not require thought, intelligence.

Another thought on Glenn: his language gives him away as a philosopher.

So, the other interesting thing we talked about was fertility, and what it means to be infertile. Glenn argues that fertility is different than, say, cardiology, because the patient comes in and defines and identifies and explicates problems and desired treatments, and this does not happen with other diseases and illnesses.

But isn’t this now incorrect? Aren’t people arguing that the continuation of the medicalization of society and the ‘net is giving rise to the expert patient? Don’t we hear doc’s bitching about this all the time? “I have this symptom, I must have this problem, and the commercial tells me the purple pill will fix it! Give me the purple pill!”

Glenn was asking the wrong question this morning when he was asking about infertility. It was too selective and pieced out a question — not holistic. The question is not is someone infertile and how do they become not, but whether or not a person can reproduce without the assistance of anyone but their sexual partner (as we are not asexual creatures). If the answer is yes, the person can reproduce without assistance, then there is no further questioning. But if it is no, we get into flowchart like situations:
Can the person reproduce? No?

Does the person want to reproduce?

No — okay then, nothing to see here.

Yes — okay, then why can’t the person reproduce?

This question can have numerous answers, and what answer is given dictates what happens next. Is the fallopian tube blocked? Are there eggs? Does the man have a high enough sperm count? What is the sperm’s motility and mobility? What about seminal fluid — is there enough? Can fertilization occur? Can implantation occur? Does she continually miscarry? Is there a prolapsed uterus? The questions can continue, and from each question then comes either a solution or another question.

Infertility is simply a medicalized shorthand that tells people there is some reproductive issue occurring, something that is wrong, where a person’s reproductive ability contradicts their reproductive desire.

By saying desire, we can frame it in terms of want, desire — where you would not necessarily claim the same thing occurring for a heart transplant patient. But we can also see it in the terms of the heart transplant patient, who needs a new heart in order to continue their biological destiny of being alive. Another biological destiny is reproduction — so there is a need, then, to overcome the medical issues that block that genetic imperative.

Also, and I’m sad we didn’t have a chance to chase this, but Glenn took a comment from a LIM student, who said that curing infertility would be returning function to normal, but can’t you problematize the idea of normal? What does it mean to be normal? Normal to yourself? Your own baseline? Well, what if your baseline is infertile — wouldn’t that be normal, for you? Normal to society? Well, what society? Our society? Doesn’t our society take infertility is normal after a certain age? It’s too vague a definition, and too flexible and open to poking of holes.

And in closing, to blend a bit of Sue and Glenn: Zizek would argue that popular culture is exceedingly important in shaping mass cultural expectations about behaviours in our society. While we are a nation who doubts intellectuals, and demonizes them — I would argue more and more, since the reign of the first Bush presidency, but I’m an unrepresented moderate — there is a refuge in science fiction, both in movies and the growing number of shows on television, especially the SciFi channel. And I still maintain that Daniel Jackson of Stargate fame is an example of the rescuer scientist, not the demon. Shall we argue?

The Affective Part

Have you ever noticed that the colour of a Starbucks frappuchino, or really, any blended coffee beverage (and perhaps even any coffee beverage) is the colour of brown packing paper, or corrugated cardboard? I hadn’t, until today, despite my several-latte-a-day habit. In fact, the only reason I did was because, as I was draped over the customer service desk this evening in Barnes and Noble, I did a doubletake when my eyes landed on a Starbucks iced drink cup. At first, I thought someone had left their drink, then my eyes snapped the stuffed tissue and confetti topping into focus. But it took a few more minutes before I could make heads or tails of what was inside the remainder of the glass — it was such a convincing illusion, I actually wondered for a moment just how it was the tissue wasn’t soaking up the liquid.

These are the thoughts that flit through your mind as someone sees if another store has the day planner you need, after a late Sunday class and dinner with your new classmates.

I’m tired. In less than a week’s time, I packed a UHaul full of my belongings, drove 3500 miles with my parents, two cats, that UHaul and my car (which means I quite literally drove about 2500 miles), and then found, rented and unpacked that UHaul on this side of the country. Only one day stands as buffer between that and the start of what I’ve been jokingly calling my bioethics bootcamp. I’m tired.

I know that this tiredness is what is underscoring my intense feelings of imposter syndrome. I knew I would feel like this at some point at the beginning of this whole Union/Albany program, and that I would have to overcome all those things I felt when I started at Seattle Central, and when I started at the University of Washington, even when I started more specifically within the Comparative History of Ideas. Still. I had hoped it would come a bit later — perhaps around my first paper, or major test. Not now, not the first day.

The group is split in two, really. There are the undergraduates, those who, at dinner, were talking about 22 being old. Then there are the rest of us. The rest of us are the folks in the Master’s program, although I seem to be the only one who’s doing the dual degree program with SUNY Albany — another weird feeling. (I was hoping I wouldn’t be The Only One, like I was in CHID. In a lot of ways, I won’t be — oh, the glory in being able to even do something so simple as mention what my thesis was on and have people nod knowingly — but, in other ways, apparently I am.) The rest of us, by and large, are professionals. Medical doctors, nurses, lawyers.

It wasn’t so bad when we were broken into our small workgroups, the groups we’ll be in for the next 2 weeks of activity. Peter is a cardio surgeon from Florida, moving into hospital administration after an accident has left him unable to stand for long surgeries. Neal and Amanda are undergraduates in an 8 year MD program Union offers; rising seniors, a term I like. Then, there was me, something of the buffer between the ages, as it were.

But as we went around the room, listening to introductions, that imposter feeling began to sink. Sure, it sounds like I’m one of few students in the room who actually has a medical history and ethics background — hooray, minor that consumed my major — but still. These other people? Surgeons, doctors, nurses, multiple degrees, PhDs, just adding another, want it for work, school, fun… Even the other recent graduate, amusingly also from my neck of the woods (Seattle U) is living in Manhattan. Doing something different. More. Better? I don’t know.

Our group has been assigned a policy case to review and present to the class. Through luck of the draw, it’s the Texas law Baylor invoked earlier this year with Tierhaus Habermas (I’ll need to check the spelling of that name), something I did some research on for and with Sara Goering and the history’o’medicine class. I suspect it will be good to have something I’m supposed to be doing where I already know a little. Just to keep me from feeling like a complete fraud.

Aside from that, though, I can’t really begin to express how shiny this is. At one point, we were instructed to call everyone by their first name. “Everyone is exceptional, so we’re all just who we are.” This is, as pathetic and ass-kissing as it might sound, an amazing thing to me. These are names, big names, in the field. People whose articles I read in class, whose journals and books were assigned reading, people who I decided I wanted to be more like, to do the same things, to have the same sort of impact. And now I’m in a room, at dinner, talking to their wives, making jokes, laughing at socks, smiling, trying not to be so shy, trying not to be too forward, trying to just be, and probably failing miserably on all accounts.

But I was going to move away from the self-doubt and knocking of myself, wasn’t I?

I’m really looking forward to the next couple of weeks. I’ll be listening to lectures by some of the most well known people in the field, broad as it is, and some of those people aren’t researchers or professors, or even practicing ethicists, but the cases themselves. Dax. Can you believe it? I’m going to have a chance to listen to Dax speak.

Dax is the first serious case study I remember, one Nancy (Jecker) used in my first MHE class. I remember watching the videos, reading the interviews, seeing interviews, and feeling convinced that this field is the right for me. Feeling certain, for the first time in I couldn’t remember how long, that I was finally doing the right thing with my life.

Now I get to meet him.

How frakkin’ cool is that?

Of course, the flip side, not necessarily of meeting Dax, but of patients as a whole, is part of the reason we were asked to write this journal to begin with. This is supposed to be a reflection of what we think and feel, and in some ways is supposed to let us see how to distance ourselves, to record what Wayne referred to as our acclimation process. The thing is, the acclimation process worries me. Is it really a desensitization process? Isn’t this what so many people complain is the problem with our medical system to begin with?

On the one hand, I understand the point. When confronted with some of the horrors that can happen to a human, or what medicine can sustain, how can you not have the choice to either toughen or break down and cry? To act, or be paralyzed in inaction? The distance is a necessary component to maintaining professional distance and ability to use the ethical paradigm we’re being taught to do the job we’re expected to do.

But on the other hand, perhaps we need to break down and cry, and be that intimately connected to how we feel. Isn’t that feeling the affect we need, that I argue for in that damned thesis? The thing that connects us together, that prevents us from melting into autonomous and alien worlds? The thing that binds us, that motivates us to use that paradigm to do right?

The gripping hand says that I’m forcing things into an utterly unnatural black and white distinction, and I genuinely hope that this is true, and that the binarism is a result of a rough first day. That in two weeks time, I’ll write my final entry for this bootcamp, and I’ll look back on this first and smile, amazed at the distance grown between myself in such a short span of time, and that I will see how to have functional distance without emotional frost.

Before any of that can happen, however, I have to first make it through these next two weeks, ego intact and perhaps slightly buoyed. Which can’t happen until I get some sleep, find my bag and book, and continue to settle in to my new home, both academic and otherwise.

new idols

I have been meaning to link to this for, oh, almost a year now. That reader? Of course, those of you who have been longtime readers – all five of you? – know that I taught that class, and that I’m that particular reader. I never did upload the syllabus, but I should… I did use it as part of my application package to graduate school, and the kind gent who wrote that article, and suggested I shoot them that syllabus? Name of Glenn McGee? Is standing about 10 feet from me, using Jon Stewart and Stephen Colbert to teach, making horribly funny jokes, and generally charming the pants (skirts?) off everyone.

I think I’m in love. 😉 (And hello Glenn, if you see this – I’m the one who actually knew when Schiavo died. I won’t mention the late to class, got lost getting here…twice… bit.)