"the hardest thing in this world is to live in it"
Mostly everything else in a brain-academic way.
Kelly is a touch bit drunker than she has been in a while. But she was actually also more outgoing and social than she has been in a while, so perhaps it’s an even bet.
Either way, fun today and work all the weekend long. …that ought to be fun. Here’s hoping for not so much with a headache in the morning, eh? (Still considering the haggis thing, too, Jen…)
I fell back asleep pretty much immediately after my last update, lending a bit of credence to the whole “tired from being sick” concept. Solidifying that was the fact that, this being the first day of the semester, I set my alarm relatively early so I could work a few hours before disappearing into academia for the long majority of the day. The whole schedules thing I was mentioning last night.
Well, I woke up around 12:15 to Lunar licking my face, the next door dog barking, and Toledo passed out across my feet, pinning my legs down. 12:15 was not the time I had set my alarm for; in fact, it was a good almost-five hours later than I had set my alarm for, and I was puzzled. Where the hell was my alarm and why did it not off?
The answer to that is that it would appear I have a wicked underhand when I’m asleep. Rather disturbingly, I don’t remember this at all; however, the several broken pieces of alarm clock at the foot of the wall across from me is a good indication of how displeased the idea of waking up apparently left me, this morning.
I made it out the door in time to grab lunch and perhaps even my books before class, but of course was on campus and halfway to the bookstore before realizing I had left my wallet in my other jacket. So not only did I not have money for my books, I had no way to get lunch, or even anything to drink. Add to that getting home only half an hour ago (a little after 10pm), and it’s no wonder I have a headache and feel like I’ve been hit by a bus.
Wednesday’s are going to be long days – I’ll be gone a good 11-12 hours if I keep my current schedule. I’m not entirely sure I’m up to it, and need to decide before this week is out. At the moment, the idea is kind of terrifying, but I’m also tired, have a headache, am beyond hungry, and pretty sure my ick is getting worse again, and not better.
Speaking of the latter, I’m back to cough and phlegm and ear pain, oh my. Which means getting up early and trying to slip into the doc’s office either right before or right after class, to see why I was getting better and am now not. But first, the advil needs to kick in so the pounding drum and bass band behind my left eye will shut up enough to let me work for a few hours before I head off to sleep.
For those of you who have read The Secret Life of Lobsters, the word umwelt will be a familiar one. It’s a biological term (German, of course – all the great descriptive words are, aren’t they?) introduced by Jakob von Uexküll that literally means the surrounding world, or environment, and practically means the sensory experience that gives an organism its subjective experience of the universe.
To put it in terms that the philosophers in the room might understand, it’s the biological take of Nagel’s phenomenal, subjective question of "what is it like to be a bat?"
In The Secret Life of Lobsters, umwelt is brought up when discussing how it is a lobster sees in the water – specifically, the fact that a lobster actually sees scent. (It’s a fascinating book, and I highly recommend it – especially to those of you who enjoy books on food and food origins). Where I didn’t expect to see umwelt so immediately was on MSNBC; yet after finishing the book and watching football, I turned to do my nightly crawl of news and found just that.
This narrative on MSNBC is titled "Anorexia nearly killed my wife", subtitled "To better understand a loved one’s illness, Tom Cramer stopped eating, too". And that’s precisely what the story is – a narrative of a husband’s perception of his wife as she developed anorexia, his reaction to her not eating (a very typical attempt to bribe and pressure her into eating), and then finally, his decision to mimic her behaviour and severely limit his calories. He did this out of desperation, as an effort to understand just what being anorexic was like, to understand the hold it could have on his wife – something, anything, that could allow him the small break he needed into her psyche so that he could help her, and help their family.
It’s a small but fascinating glimpse into umwelt, as he himself moves from what we would consider ordered to disordered thinking, from being hungry and fatigued to feeling challenged and buoyed by his control and the lack of eating. Although he stopped his experiment after a week, it was enough time with another perspective, a different subjective experience, umwelt, that he has been able to support his wife on her journey towards wellness since.
An example of why an ability to shift umwelt is necessary becomes clear in the recent UCSF missteps over MRSA USA300, the new strain of community acquired staff that had been widely reported as a new gay disease – not necessarily because of malicious intent on the part of the media (although the sensationalism is hard to deny), but because in their effort to be precisely clear to fellow researchers who would be peer reviewing their work, the UCSF scientists used language that has precise meaning within the public health community, but has a much broader meaning to the general public. When the media read the report, what they say, the meaning they interpreted, was clear – and utterly incorrect, because their umwelt was wrong, and although they were both using English to communicate, they weren’t using the same specialized form of the language.
Many years ago, in my former life in the computer industry, there was a very small group of people who had a highly valued and rare skill. They were able to interact with both the computer programmers and the lay person, shifting their language to be appropriate to who they were talking to. They could talk tech with the best of them, and then turn around and translate that tech-speak into something the general public could easily understand. (And anyone who has ever tried to follow a stereo installation manual or computer guide knows how valuable someone who speaks both languages is.) In Marvelous Possessions, Stephen Greenblatt calls these people the Go-Betweens, who can navigate and translate across multiple worlds.
We tend to see and think of ourselves as all the same, and discount the fact that even within our human sameness, the range of subjective experience is so vast, so different, that at times we need to step out of our own way of thinking and try to see the world in a new light. At my alma mater, we called this parallel thinking, in biology it’s umwelt – and it strikes me that the medical humanities, especially those of us working in applied, clinical or bioethics, would do well to either adopt the term or come up with our own for it, as it seems to me something that is at the very heart of what it is we do.
Originally posted at the Medical Humanities blog
As most of you already know, my computer hard drive bailed out on me Thursday night, taking everything with it. I have a new drive, but the backups are not looking so good right now. And more to the point, the computer isn’t looking good, either – it’s been consistently crashing with a kernel panic in the Airport driver since I got the new hard drive (and, probably not coincidentally, Leopard). Because it seems highly likely I’m either going to have to have more repair done, another drive put in, or drop back to Tiger, I’ve not bothered to place anything of value, or that would be bad to lose – like email – on this system.
So I’m sort of AWOL right now – best bet to reach me is leaving a message here.
Invisible disabilities are interesting in that by their very nature, you can hide them and thus choose how you are perceived by others. There are some disabilities, however, that might qualify as invisible in that you cannot see them, but are not because they do literally affect how the world interacts with you (and you the world).
One of the most common of these is deafness – it affects your ability to hear the world, and interact on a speaking level. And because of my respiratory illness, which caused my throat to swell to a point that speaking was no longer possible, I was thrust into the world of communicating with the hearing in a way that labeled me deaf.
This is not the first time I’ve had this experience; upper respiratory infections that affect my voice, and often my hearing (as has happened this time) are a common bane and side effect of having asthmatic lungs that occasionally rise up in an effort to kill me. And it’s an experience I’ve undertaken voluntarily, as well, when I spent time learning American Sign Language, and when I spent time at the California School for the Deaf. But that doesn’t really change how strange an experience it is, especially when you’re already not feeling well and the last thing you want to do is have people yelling at you, or moving slowly, because you’re using a pad of paper to communicate rather than your voice.
And what has been different this experience is where I live. Albany, New York, is not an area with a large deaf population, unlike the times I have voluntarily or otherwise stepped into a world of communicating by sign and paper. Fremont, California – home to the School for the Deaf and Blind – has a very large deaf population because of the residential school, and Seattle is one of the largest populations of deaf in the country. In these places, the hearing residents are accustomed to living and communicating with the deaf, so there is very little of the stereotypical response to deafness. In fact, the first time I ever experienced it myself was this past Thursday, at the local Boston Market.
After picking up my latest batch of medications, I decided to see what sort of soup and other soft and hot foods were available, to save myself the effort of trying to cook. I was armed with my pad of paper and pen, and had my question written out before going in. “What’s the soup today?” A simple question. I smiled in response to the greeting given to me behind the counter, and handed the man my pad of paper. He read the note, looked at me, gave me my pad back, and then went into a very slowly exaggerated pantomime, pointing at the two pots of soup and slowly, loudly, and with exaggerated lip movements, saying “THIS.IS.CHICK-EN NOO-DLE.THIS.IS.BEEF.BAR-LEY.”
I sort of blinked back at the voice – it hurt my already irritated ears, and then mentally shrugged and wrote out my order. I handed the paper back to him, he read it slowly to himself, and then started to shout questions at me. Apparently thinking that shouting wasn’t quite good enough, he began a crude pantomime of his questions, including pointing to a coworker when asking if I wanted white bread, or himself if I wanted wheat bread.
At this point, incredulity had set in, and I was curious to see what sort of an ass he was going to make of himself next. And, thanks to his yelling, the entire restaurant was watching him do it. He gathered my order together, I paid, and as I was gathering up my purchase, I swallowed the pain and whispered to him “perhaps you should have your ears checked out, you seem to have a problem with shouting” and left as he stood there, flabbergasted at having his assumptions pointed out to him.
As a striking contrast, I was back at Boston Market Friday afternoon for more mashed potatoes and soup, and was still avoiding speech. The waitstaff was completely different, and the gentleman who served me that time was polite, friendly, and treated me as he would any other customer – even though I completely limited my communication to the pad of paper.
I’ve never quite understood what it is about people that makes them think that speaking louder will miraculously solve someone’s hearing issues, or even that because someone does not speak, they cannot hear. While vows of silence are somewhat rare in our mostly-secular culture, they’re not completely unheard of, and there is, of course, the simple and standard illness explanation. Likewise, I’m not sure why people think that exaggerated lip movements means ease in understanding what’s being said. While I can and do read lips – a useful skill both in watching television (I almost always manage to catch what Jon Stewart says to guests as the show fades to commercial, for example) and in communicating in crowded space – pulling lips into exaggerated mimicry of a letter makes the reading much harder, not easier.
It’s the sort of thing that pulls me in two ways. On the one hand, I think, at least the person is making an effort to communicate. They’re trying to get a message across, even if they’re not necessarily thinking about the best way to succeed. (For example, how much logic does it take to realize that, if a person can hear what you’re saying, chances are good that you did not cure them of their deafness with your slow, loud speech, but instead they can hear and you’re just being an ass?) But on the other hand, they’re just being an ass – they’re not moving beyond basic assumption and lack of thought or knowledge, something that seems to me is done because they don’t see the point in doing so, why make the effort? It’s almost as though there is still an undercurrent of “that dumb cripple” – where if you just treat the person like they are a child, or have limited intelligence, all will be fine, because that’s what the actual problem is.
As I said, this is the first time I’ve ever experienced this sort of treatment firsthand, although of course I’ve heard stories all my life. And if this is the treatment people who are mentally fine, and even physically fine save for an inability to hear, or having not learned speech, or even who simply have an upper respiratory and middle ear infection, are subject to, I can see why there are enclaves in the United States where people with common disabilities band together. It’s easier to educate a community if there is a group of people to interact with, rather than a lone person tilting at windmills of ignorance.