Life as an Extreme Sport

Resting with Patience, and Bunnies

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.

St. Margaret’s [August 08]

I know that everyone is hoping, if not expecting, a journal reaction on St. Margaret’s, and I understand why: the facility has quite a few profoundly disabled individuals there, and I think it’s a difficult thing to see regardless of how prepared you are. The staff themselves often had wet eyes during the tour, or at least our guide, the physical therapist, did. Nurse Otto also gave us a list of questions to ponder while we were there, and I guess I found those easier to think about. It’s not that I really felt neutral at the home, it’s just that I didn’t feel much different than I would in any other intensive care hospital setting.

In a way, this disappoints and bothers me. I had talked earlier about Wayne’s comments about acclimatization and distancing ourselves from what we see, and my bit of fear that doing so means a loss of humanity. I had intended to walk into St. Margaret’s with my heart on my sleeve, feeling everything and still being grounded, connected, and so forth. Instead, like I said, I found it like any other wander through an intensive care unit. Has that acclimatization and distance already happened? Some time over the last few years, did I build a wall and not notice it, and I’m just now seeing the bricks and mortar? I’m not an unfeeling person, so I really don’t know what it is. On the one hand, I feel like this is good, because I don’t feel any different, or like I needed to be different while there. But on the other, I find myself suddenly wondering if I lost a part of myself without noticing.

Potentiality seems to be at the heart of the St. Margaret’s issue. As we were told when we were there, most of the patients have no more than a 9 month old capacity, if that — and that would by far be their best patients. Yet we grant a 9- month old infant full moral agency, so why would we not do the same for these children and young adults? We assume that a well cared for infant is cheerful, happy, and has a good quality of life. Why would someone in a facility like we saw at St. Margaret’s have any less a good quality of life than that infant? The only conclusion I can reach is a dual one.

1) We know that, at one point, this person had a different quality of life, age appropriate and shifting with their age as they grew up. Because of our knowledge of their previous baseline, we see where they are now and assume they must be miserable, stuck. Aware that they are unable to progress, and that they will be forever as they are, static entities until death.

2) We differentiate this injured person from an infant because we realize that an infant has the potential to grow, change, age, and have an age appropriate quality of life. We don’t consider a 35-year old living at a 9-month infant’s capacity having an age appropriate quality of life.

Of course, the problem that comes up with this is that we still grant moral agency to someone with Down’s Syndrome, who typically has limited capacity and quality of life appropriate to age. …or, then, perhaps we have to look at whether or not we grant people with limited mental capacity full moral agency?

Interesting. I think I’d like to continue this conversation with someone I can actually use as a sounding board. Any takers?

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.

[The Daily 08-09-2006] The Road Continues

Kelly Hills
2006-08-09

It’s a hot afternoon in Washington, D.C. and a young boy buys a pickle from an ice cream and hot dog vendor, expecting cool relief from the sweet vegetable.

Instead, a flood of PCP and ecstasy floods his system, causing him to go into convulsions. By the time EMTs arrive, the boy has stopped respiration. While they are able to restore his breathing, and the hospital stabilizes him further, he does not wake up.

Two of the three neurologists to examine him are certain he is completely and totally brain dead. The third sees some electrical activity, and cannot say whether there is total brain death, but agrees that the child will never wake up.

Doctors wish to take the boy off life support; In their eyes, he is dead. He cannot survive without a ventilator and his heart needs assistance to beat. But the boy’s parents frantically demand doctors do everything possible to keep their son alive; they are Black Muslims, and believe that until Allah calls their son home, they must keep the child alive.

What’s a doctor to do?

If you have a clear idea, let me know. Robert Veatch, the ethicist, philosopher and professor asking my class this question, doesn’t have a comfortable answer, and neither do any of us.

The class, however, is not at the University of Washington. I have left the school, and even left the West coast — I’m now in Albany, New York, doing a slow boil in the high heat and humidity. They assure me the weather is not normal; I suspect they’re just trying to pull one on a Seattle girl.

I’ve spent the past six months using this space to rant and rave and think aloud, to provoke you (hello, pharmacy students!) into your own thoughts about ethics and medicine. I hope you’ve read what I’ve said and agreed, wanted to know more — or disagreed violently, and wanted to learn more.

I hope that at least a few readers decide to go down to the Health Sciences Center and take some of the medical history and ethics courses offered, maybe for a minor, maybe to join me along this road towards becoming a specialist in bioethics.

I’ve taken stands here that I don’t necessarily agree with, and I’ve worn my position on my sleeve. If you know me, you probably know which is which. For this last column, I’ll be obvious about having my heart and gratitude in the wide open.

I hear it’s tradition that your last column is a bit of reflection and goodbye. My time at The Daily has been one where I’ve had the chance, thanks to my dear friend Maureen Trantham, to explore some ideas about medicine, ethics and popular culture outside the formal academic setting. It’s been a wonderful opportunity and experience.

But as it may be evident, I’ve a lot to learn before I can comfortably call myself an expert. That’s why I’m on the other coast, three hours ahead, being steamed to death. I’ve joined a program run by the Alden March Bioethics Institute; I’ll be earning a master of science in bioethics from the Graduate College of Union University and Albany Medical Center, as well as a PhD in Philosophy from the State University of New York.

Hopefully, I’ll be following in the footsteps of those who’ve inspired me, the people you should seek out if you want to be so inspired: Phillip Thurtle, Denise Dudzinski, Sara Goering, Brian Reed, John Toews, Jess Olsen and all the great folks in CHID and MHE. Thanks … I’ll miss you all.

I don’t have the answer for the scenario I posed at the beginning of this article, but maybe I’ll come back in a few years and let you know what I’ve found out.