Category: AMBI

To be perfectly honest, this entry starts with a few random thoughts accumulated Tuesday afternoon, which I found a bit latter in my book — well, latter being that it was after my notes from Nurse Otto, and I neglected to turn that far when I was typing things up for Journal 4.

This is the point during the week where I first began to get exasperated, and the reason for it is the near constant refrain on disability. To quote exactly what I wrote down:

It pisses me off when people try to pull “only the disabled” and then focus only on physical — who’re we to judge another based on how they look? I know that this pisses me off, and I’m trying to keep quiet, but her attitude just really irritates me — she sleeps through class, asks questions that have already been asked and answered that she missed because she was sleeping, and makes points that were already made and talked about for 45 minutes. Then she brings her attitude about disability as though that grants her some position!

I am the first to admit that part of the reason this so irritates me is that I am disabled, but just invisibly so. While I can certainly “pass” in the normal world, I do so at an effort, and it’s one that takes drugs and patience, and knowing my limits. I don’t take classes at times of day where I know I’m likely to fall asleep in a hot lecture room, I don’t commit to doing things I know will end up leaving me in bed for a week. I live as normally as I can, and I expect very little sympathy for what is ultimately my own problem. Yes, I am incredibly grateful for the love and support of my family and friends, but they’re family and friends — there’s a bit of obligation to give a damn built into our relationship. I don’t, however, think that obligation extends to my classmates and professors.

I do think that it’s incredibly important to know where you come from, how you colour the narrative you construct. The observer is not just biased, but that bias impacts everything the observers is involved in. There are times appropriate for your narrative, but it’s not every time you speak!

That said, I do think one of the more provocative questions brought up last week is what does it mean to have life? What does it mean to live? How do we define it? At least in part, that definition is based on a Cartesian inheritance of a notion of the split between body and soul, the machine and the ghost within. But what about the view that there is no ghost in the machine, that we are an embodied being, and that, as is said in Buddhist texts, I exist in my finger, I exist in my hand, I exist in my arm and leg and chest and… where do I stop, and where do I begin? What can you remove to still retain I, and what must go away for I to be lost?

Like many people, I suppose I look to a mix of science and religion for my answer. Scientifically, I understand what happens to the higher brain while someone is in a PVS. An so I suppose, that even on that level, I do not subscribe to the view that death is only a whole brain activity — that death happens when the higher brain ceases to function on a permanent basis. This, thankfully, or perhaps not coincidentally, is also similar to what His Holiness the Dalai Lama espouses: that when the conscious brain is gone, it is permissible to remove life support and (most importantly) donate the organs. That death has to have meaning, and the meaning is generated through the gift of life, one of the most selfless acts a Buddhist can do.

This, of course, is in strict disagreement with traditional Buddhist beliefs, including those listed in the Tibetan Book for the Dead. In the traditional mindset, death was cessation of cardio-pulmonary function, and the body was left for three days before death declared. The body was then left for a while longer, as the necessary rites of the bardo were read. The exact ethics are complicated, and variable, so I’ll skip them here, but they do boil down to a notion of there being something in I, inhabited not necessarily within the brain, but within the electrical field generated by the brain (in here Buddhism and quantum physics run into one another and have a lovely dance). When that field ceases to be, you are merely displaying attachment to the husk that is the representation of a life of memory, and that is for you to work through — to remove your attachment and allow what must happen to happen.

Does this sound cold? I suppose it depends on your own personal view of when death is.

So naturally, the thinking about death that Bob Veatch brought about on this day is related to his outlines of the basic positions of the various abortion camps. One thing I thought was interesting, especially given Bob working in a religious institution, was that he did not understand and acknowledge that the fundamentalist Protestant view is quite often not within the guidelines he outlined. Specifically, I’m thinking about his description of how cardiac function translates to argument, and when do you say “this cardiac function now exists” so that you can create a parallel argument of when the cardiac function ceases. I suppose that in my experience, if you have individual, spontaneous beating cells that you can immortalize and grow in vitro — well, that fundamentalist Protestant movement is going to scream life and demand proxy-agency. (It made more sense in my notes, really…)

But what stood out on this particular day, in this particular lecture, is the Eastern European women’s reaction to Bob. Bob Veatch is a legend, at least on my coast. The first person to train in bioethics, to see where the field is going, to become neck deep in these issues — well, he’s not a god, but he’s got to be pretty close. But Renatta and Joanna don’t have the same script I do, they don’t have my lineage, my textbook collection and multiple syllabi that are rife with “Veatch, R.” They don’t think twice about standing up and challenging what he says — which shocked me when Renatta did so.

Of course, this challenging attitude it what bothers me about the LIM students, too. I suppose the difference between the two groups, for me, is the level of respect. The Eastern European women challenge what Bob’s saying, but they do so with a politeness, an acknowledgment of his position and professional stature. They don’t challenge his knowledge of bioethics or philosophy, just his knowledge of details of, say, biology (and thus the implications of the misunderstanding as it applies to bioethics and philosophy). At least some of the LIM students, on the other hand, appear to believe they have all the answers to all philosophy questions, and there’s absolutely no problem with telling a leading authority that he’s wrong. Thirty years experience versus maybe a quarter or two, but Bob’s the one who’s wrong.

I honestly don’t mind disagreement, or debate — that should be obvious if you get me after coffee, and onto a subject I enjoy talking about. But do it with respect for the person you’re talking to, and respect their professional knowledge!

I’m ranting again, aren’t I? I can’t tell how much is just midweek frustration and tiredness, and how much is other — is wanting to get along with it, move forward, move faster. It’s such a wonderful opportunity; when will I ever be able to take a class with Bob again? And we spend so much time on Philosophy 101, when I want to be at Ethics 650.

We deviate again to the Hippocratic Oath, and I find myself growing frustrated with the binary exchange, patient/doctor, nothing more. Harm/benefit, yes/no, 0s and 1s — there is more to the situation than this! It’s an environment, it’s a wide field, it is not so simple. There is nuance – how do you argue against treatment for a PVS patient that would be creating harm to a conscious patient is not simple, it is not yes/no. If a patient cannot feel pain, cannot suffer, where is the harm? Where is the nuance? Can you argue harm to body as opposed to “soul”? Whatever the answer is, to whatever the question, neither are binary. Affect comes into play; there is more being treated than just the patient. There is the family, there is the nursing team, there is… me repeating myself again. Again. Shall we see if I can find something less repetitive to talk about?

I found John Kaplan’s exercises in research ethics to be a fun break in the day, headaches generated from the people I was working with aside. It was bright and cheerful, and just simply fun to break down a case, attempt to find the highlights, scribble them out into a cheat sheet, and then debate and discuss, laugh and listen. Bebaeau’s technique is very similar and familiar to Jonsen’s fourbox, so there wasn’t a lot to learn there, in methodological theory — the names of the divisions were different, but the concepts the same. Break things down into a logical structure to analyze the situation in front of you.

Of course, this is also the class where I first outwardly lost my temper — I think, however, I should be eligible for an award, as it took this long of hearing the LIM students say that this isn’t the real world, it doesn’t really count or matter. I’m here because ethics, bioethics, research ethics, clinical ethics, are my real world — and the real world of many people in the hospital, in nursing homes, palliative care, and all forms of the medical community. The utter disrespect and disinterest has been insanely frustrating, and this is the point I lost my temper. And I did so publicly, and was quite embarrassed by it (though apparently not so embarrassed by it, as I’m repeating it here). Of course, the flipside was having so many people come up to me after class and sharing their frustration about similar with me…

Anyhow, I digress. Professor Kaplan forgave me, and in fact told me he was glad to hear me lose my temper, because if you don’t get emotional about what’s going on, you’re not really doing it right. I don’t know if I fully agree with that, and I’m certain I don’t remember what he said specifically, but I appreciated the sentiment — these are volatile issues, and being in touch with that volatility is not necessarily a bad thing.

I found myself also being a bit irritated with graduate students (since I don’t want it to seem like I’m just peevy with the LIM students), specifically a few who kept wanting to apply the rules of the business world to academia. Academia doesn’t operate on the same proprietary principles of the computer and business world, it is not a business — or at least, should not be. The commercialization, commodification of academia, the same thing that is going on in medicine, is in my eyes a bad thing. A patient is a patient, not a consumer, and a student is a student — not a consumer. And academia’s hallowed halls and ivory towers are not lined with stockholders meetings and ticker tapes!

I think I want to leave this with something Wayne said, that I’ve been repeating to myself whenever I am in the place of analyzing an ethical situation: Don’t get bound up in the legal — our job is the moral and the ethical. Leave lawyering to the lawyers!

I’m sitting outside Olin Hall, on the Union campus. It’s a pleasant morning; I actually have a sweater on. It’s maybe 65 degrees, although the high is threatening to hit 85. I’ll be inside and air conditioned for most of it. I’m feeling pretty today, too – very light makeup, my hair pulled up in a twist with tendrails escaping and curling around my face. I’m meeting an expert on the case I present Friday, this afternoon, so looking nice can’t help. Besides, it’s always good to feel good on a Monday morning.

I’m surprisingly chipper for having been up since 5am, although I’m certain the ginormic latte from Starbucks is helping; it is only helping, though, since I was chipper before. We’ll see how I feel around lunch; I suspect flagging exhaustion is in my near future. I didn’t get to sleep until much later than I wanted; I’m afraid the Lunesta is no longer working. I’m not sure if this means going back to either rozarem, or the ambien/trazadone mix, or trying yet another something. I wish I knew the doc’s at AMC better, I’d just ask them to prescribe me something (and refill that pesky vicodin prescription while they were at it).

It really is beautiful here. The campus is greener than UW, with hidden pockets of garden and seats scattered everywhere around the large central lawn and Nott Memorial. Union was apparently the first planned university in the States, and it shows in its design and function. It really is lovely.

The large amount of green encourages wildlife. The squirrels here aren’t as scarily bold as the UW squirrels, but maybe that will change when food isn’t so abundant. In addition to them, and the near-ubiquitous sparrows, chickadees and flocking songbirds, is a population of small, wild bunnies. They’re small rabbits, not the large jackrabbits of the southwest. I don’t know if it’s a domestic rabbit population gone feral, like we had in Seattle, or if this is just natural around here, but they are here. I see them in the brush, or stretched out on the lawn on a quiet afternoon, basking in the shade. Friday, while I was stretched on the lawn doing similar, one came within about 3 feet, stretching out sideways and actually falling asleep – it snored! Of course, the minute I moved, it was off, and that was that. Still, they make me smile. Another bunny park.

I’m not nearly as homesick as I expected to be. Part of that must be because I saw so many of my friends so rarely, to begin with, and I continue to talk to people via this lovely device known as the computer and the internet. In fact, to be honest, this past weekend I spent as alone as I could, just recovering from being around so many people for so long the last week. I am, I admit, homesick for CHID and UW and Phillip, and everyone in the office. Sometimes, when I lay back just right on the couch, and close my eyes, I can hear everyone talking about laughing, voices echoing in mind.

I’ve been assured I’ll be integrated here, and start to make friends with the same interests as my own. I trust, at a surprisingly deep and visceral level, the person who told me that, so for now I rest with patience and I wait.

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?