Thursday, February 12, 2009

Time well wasted

Fluttering in the wind as the rain beats down, my hand feels frigid against the stem of my umbrella. There is a cold in this warmth.

Yesterday morning, we had an hour of lecture on truth telling followed by a two hour seminar on the same topic. The lecture provided an insightful patient perspective from women with AIS (Androgen Insensitivity Syndrome). These are women that are born with the genotype 46XY (male), but because of their bodies lack of sensitivity to the hormone testosterone, they are unable to develop. Our body's default is female, so female they are. They are born with testicles inside their body, but have no male or female duct systems (no vas deferentia, no fallopian tubes, no ovaries, and no uterus). They have no pubic or armpit hair either. Other than that, they are physically and psychologically female. They have a normal (2/3 of a) vagina and sex drive; and are capable of both intercourse and orgasm.

The truth telling aspect of these stores is that AIS is a highly stigmatized condition; and in both cases described, the physicians withheld knowledge of the condition - removing the potentially precancerous testes under the pretenses of another condition (e.g. cancer), an example of what is referred to as therapeutic privilege. But patients are often more perceptive than physicians give them credit for, and recognized that something was not right with them. They continued to seek answers until they stumbled upon the truth, at which point they were rightly angry with their physicians.

However, there is a stigma associated with AIS - one patient had their husband leave them upon discovering the condition. This led Evey to wonder aloud as to whether the physicians had actually done the patient a favour by not telling them. After all, despite being infertile, they could have lived a normal life in blissful ignorance. Certainly this was the doctor's intention at the time, though such paternalistic philosophies have subsequently fallen out of vogue.

The patient described how they found that it was quite unfortunate that society had come so far in accepting homosexual and transgendered peoples but was still uncomfortable with persons afflicted with AIS - we need things to be distinctly male or distinctly female, she said. I discussed this over lunch with my peers. In all honestly, I too would have difficulty finding out that my partner was actually 46XY, despite them being essentially female. But that is not to say that I would have less difficulty finding out that my partner was transgendered person who had once been an actual male. Thus, it is not entirely accurate that we've come farther in embracing transgendered people than AIS afflicted persons, though Evey pointed out that the real point is that a stigma exists at all.

Mind you, as a friend or a patient, I would have no trouble engaging a person with AIS. Certainly, I intellectually understand the immense challenges they face - they are female, but their chromosomes do not agree. From any practical standpoint, they are women; but their genetic makeup still retains a psychological punch. I agreed that it was unlikely that I would terminate a long-term relationship on the basis of a diagnosis of AIS, but that it would likely alter my outlook (though not voluntarily). As a result of not being able to see my partner in quite the same light, the relationship might ultimately come apart on its own. Who is to say, though?

The point is really that while we all empathized with the challenges of AIS patients, many of us perceived barriers in crossing the line between acquaintance and partner. I hope that is not too bigoted.

An interesting anecdote from this lunchtime discussion:

Mello: Did you know Lucky is allergic to apples?

Maximus: Thanks, what a meaningful piece of information.

On to the seminar. Truth telling is an important topic to be sure, but the seminar felt very proscribed and more than a little fluffy. Ethics seminars are usually this way - there are a lot of opinions expressed, but most people understand their own views on how to approach the situation and these do not change. All the while, the physician tutor usually pushes their own perspective and agenda, intentionally or not.

However, one case in particular grabbed my attention (due to its cultural implications). It was alleged that in Asian culture (Chinese and Korean) it is typical and culturally ingrained for children to withhold bad news from their elders (e.g. to not tell their mother of her diagnosis of cancer). In the provided case, a young Korean woman was having trouble with gastric ulcers. It appeared that these were due to stress related to her recent trip to Korea where she visited her sick mother. Asked about her father, she explained that he had passed away three years ago; but deeper probing revealed that her mother did not know. The woman and her brother had agreed to allow her frail mother to believe that her husband was instead very ill and being treated in the United States, but was not well enough to see or talk to anyone. In fact, his body had been flown back and buried in Korea. The children expressed worry that knowledge of their father's passing might be stressful enough to kill their mother.

To be honest, I thought that this case was completely insane. My own experience with Chinese culture had not included any such deceptions, and my family has seen its fair share of terminal illness - though Evey pointed out that Hong Kong culture, while still distinctly Asian, is different from that of mainland China. Similarly, Evey said she found it difficult to associate the above case as having anything to do with Korean culture. However, when I asked Yubin the same question, she said she could picture such a situation arising in real life.

While in my seminar, I was sitting beside a dripping faucet. Billie and I continually stopped to stare at it in irritation. Eventually, I reached out and tried to tighten it, only to turn it the wrong way and let out a loud whoosh of pouring water. All eyes turned towards me as I frantically reversed direction. "As long as it's not the gas," was the seminar leader's amused response. I later commented,

Andy: See, I fixed the faucet at great personal cost.

Billie: Yeah, I had the same problem in another room once, except that I asked someone which way to turn it first.

Andy: Oh... I guess that would have been a clever thing to do. Still, it was more dramatic this way, wasn't it?

Billie: It was. I think this was the best possible outcome.

The seminar was followed by another four hours of lecture. Like the seminar, the material was very fluffy and was extremely challenging to sit through. Kon spent majority of the time playing with the webcam on his laptop computer, and taking awkwardly candid photos and videos of our friends. The entire exercise felt like an enormous waste of time.

After lecture, I was planning to go home and be productive. I had a lot of things I needed to get done - my Clinical Skills case report, my Problem Based Learning research, and putting together Evey's Valentine's gift. But as I was preparing to leave, I overheard my friend Ting asking people if they wanted to take her spot at the clinical skills practice session.

Andy: "That's today??!"

Now I myself had signed up for this practice session. It was the second session, and the first session had filled up so fast that I didn't get a spot. Thus, I had quickly confirmed my attendance for the second. However, I didn't realize that it was this week - I had clumsily thought it was next week. If I skipped this one (on respiratory exam), because I had a confirmed spot, I would no longer be eligible to attend the sessions on examinations that I genuinely needed practice for (like musculoskeletal). I was in a pickle.

I ended up attending the session, which involved an hour of lecture and an hour of disjointed-feeling practice. I am already quite comfortable with the respiratory exam (unlike many subsequent teachings) and had only signed up because I did not anticipate having much other work to do. Instead, I had numerous pressing engagements and I was already deathly tired. While the session was of acceptable quality, it was still tough to get through it.

As a result of this unexpected disruption of my schedule, I didn't get home until 8:30 PM. By the time I got back up to the subway station, it was dark, foggy, and desolate. My car was one of the only ones left in the lot. Interestingly enough, though, I had been late in getting out the door in the morning, and thus had to park farther back than ever before. When I went to fetch my vehicle, I noticed an enormous pile of snow, the height of several cars. It was obviously the cumulative result of plowing such a sizable parking lot; and it was still colossal despite the increasingly warm temperatures, which had already melted almost all the snow elsewhere.

At home, I ate some dinner and caught up on this week's Boys Over Flowers. After that, it was already time to sleep. Productivity = Zero.

Time well wasted? Rather, it should read: Time? Well... Wasted.


This entry was
adopted by Brutus.