Life as an Extreme Sport

In Which I Become Cranky [August 09]

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!