I was going to post about how utterly lousy I feel today (in particular, the WIDE RANGE of associated symptoms that come along with hypothyroidism, and how HELLISHLY LONG it takes before they go away and how NO ONE really tells you about any of them), but instead I will post a picture my dad posted today on his new photo blog:
He’s posting all kinds of fun pictures of Guelph lately, I’m delighted. Guelph is a very pretty town. I miss it.
Jeremy pointed me to a 2005 lecture by Mark Pesce called Piracy is Good? recently in which, among other things, Pesce argues that the future of advertising is in little fuzzy “bugs” on the corners of video, stamping a regionally-specific label that you can stare at alongside your episode of Battlestar Galactica. I can see his point; perhaps advertising has to sink into the story somehow in order to remain significant. I wondered, though, if we wouldn’t just ignore little fuzzy bits in the corners of the screen; who cares that McDonald’s sponsored Desperate Housewives? I imagine it would be more effective, though more of a creative sell out, to work a product into an episode, like Elaine’s dedication to the Sponge on Seinfeld.
It seems to be a foregone conclusion that the tv commercial is dead. People Tivo tv and just skip through the commericals; others download tv shows minus any ads whatsoever. So who would produce these things anymore?
On the flip side, there are some awesome commerials that stand on their own as little works of art.
[youtube http://www.youtube.com/watch?v=V5BxymuiAxQ&hl=en]
Jeremy linked me to this one, and I passed it on to Jason this morning. It’s an ad, but it’s a good ad!
And then there was this one:
[youtube http://www.youtube.com/watch?v=BRI-A3vakVg&hl=en]
This national rallying cry, tapping into Canadians’ heartfelt desire to be distinguished from their southern neighbours, is still well loved in spite of the fact it’s advertising a pretty crap brand of beer.
And then there’s a couple of current PSAs:
[youtube http://www.youtube.com/watch?v=vrFnnUsfWvw&hl=en]
I think that’s an awesomely effective ad, though my friend Brin says it doesn’t make him want to stop smoking. I guess you can’t have it all. And then there’s this one, which just makes me bawl like a baby:
[youtube http://www.youtube.com/watch?v=8USn0BdRQ94&hl=en]
People still pay attention to tv ads; it’s just that they have to be extremely good to keep us watching.
Last night I was waiting for Stargate SG1 to come on and watched an entertainment news program (or parts of it). On it, they described the internet phenomenon that is the YouTube Divorce, wherein some famous person’s wife recorded a video of complaints about her soon-to-be ex-husband and uploaded it to youtube. The entertainment news host indicated that everyone had seen it. I had not seen it, and had not ever heard of either of the two players involved. What struck me about it was this; there was a time that I heard about internet memes on the internet exclusively, and suddenly I learn about them on tv.
[youtube http://www.youtube.com/watch?v=fxfhInhkvtM&hl=en]
I didn’t catch this broadcast (October 8th, 1993), but didn’t hear much else about “internet” in popular media until much later. I remember the first time I heard someone talk about the internet on tv on a local news program. It wasn’t cable, just basic free tv from a pair of bunny ears, and the year was 1999. It was a mention of some businesses web site, which you could visit for more information, with a url given. I had been spending lots of quality time on the internets in the 90s, and hearing the web talked about so openly on tv made me think: well, that was a fun ride. Now everyone and their dog is about to appear. This is it: it’s over. It’s not ours anymore.
The lag time between hearing about something online, seeing it/using it/adopting it, and then hearing about it in the mainstream media seems to be getting shorter and shorter. I used to be able to count on hearing about something via friends or Metafilter or some other random web browsing months if not years before mainstream media would “discover” it. Watching blogging come into the mainstream has been fascinating; I thought it hit the mainstream in 2001 when I finally decided to get on board, but it seems that every year thereafter blogging was a new relevation and just got bigger and bigger. Now, no one even blinks in the mainstream media when they reference someone’s blog. They all have blogs of their own, and no one need to define the term anymore. Everyone’s heard of wikipedia. The basic level of internet literacy is going up.
So that’s why yesterday seemed to be such a turning point for me; the internet now has a few killer apps that have finally taken such hold of mainstream North America that I am hearing about internet memes on tv before they reach me on the internet. In fact, perhaps there’s only one killer app that brings the rest of the culture online: it’s YouTube. As with any growing community, there are no more universal “big internet memes”; what’s big in your world isn’t so big in mine, and I may never hear about your internet celebrities until something strange or radical puts them in the media spotlight. The internet has long been fractured into interest groups, but there will be fewer and fewer “all your base” moments as the user group grows, things that everyone on the internet hears about at one time or another. In my internet universe, the youtube divorce didn’t merit a mention; it was clearly huge for the mainstream entertainment media’s audience.
Next up: Entertainment Tonight finds cool social software/web 2.0 apps and reports on them before I hear about them from my networks. Scary!
My dad has a blog! It’s a photoblog, wherein he posts his pic du jour. My dad loves to take pictures, and has taken some really stunning ones; see a handful of his pics from his trip to India here. For a guy who doesn’t have much time for things computery and internety, he’s really picked up a lot of how-to details really fast. He’s posted to his blog two days in a row, with no help from me!
Maybe I’m not a changeling child after all!
I’m up WAY too late (remind me not to make myself a nice huge mug of caffeinated tea right before bedtime) reading the blogs of other people who’ve been through what I’ve been going through for the last few months, and I came across this:
People, even doctor-people, tell you that thyroid cancer is “the easy, one, the one you want to getâ€. That’s their preference, because it has its own protocol, its own special weakness, its kryptonite is iodine. What they don’t tell you, and should, is that it’s easy for them. For the patient, it’s not easy. The body still rebels. Innocent cells still get hurt. Don’t get me wrong…I am damn grateful that I don’t have one of the other cancers. I’m just annoyed at how trivial they all made this seem, how light and easy they said this would be. If you’re in my situation now, I’m sorry. I know you want all kinds of reassurance that it’s not going to be so bad. Trust me, it’s not so bad! Only sometimes! I’ve got friends battling 6 months of hell right now, just to stay alive. You wouldn’t want to ever trade places with them, your cancer for theirs. But, you don’t have the “good cancerâ€â€¦there’s no such animal. So, any fear, any panic you’ve got…it’s okay. You are entitled to it.
This paragraph could not resonate with me more. They don’t really warn you about the weird path on the way to treatment, how very sick they make you in order to treat you. Severe hypothyroidism is significantly more than just feeling “tired”. At least my endocrinologist had the decency to frame like this: “You’re going to be feeling pretty low.”
Also, I found a link to Barbara Ehrenreich’s excellent essay, Welcome To Cancerland: A Mammogram Leads to a Cult of Pink Kitsch, an excellent rebuttal to both the joyous optimism cancer patients are supposed to feel and the cult of consumerism that has enveloped breast cancer, and hinting that the culture of ultra-feminine cancer care and support is actually turned into a form of busywork that prevents feminists from rising up and taking action that might help prevent this disease.
Like everyone else in the breast-cancer world, the feminists want a cure, but they even more ardently demand to know the cause or causes of the disease without which we will never have any means of prevention. “Bad” genes of the inherited variety are thought to account for fewer than 10 percent of breast cancers, and only 30 percent of women diagnosed with breast cancer have any known risk factor (such as delaying childbearing or the late onset of menopause) at all. Bad lifestyle choices like a fatty diet have, after brief popularity with the medical profession, been largely ruled out. Hence suspicion should focus on environmental carcinogens, the feminists argue, such as plastics, pesticides (DDT and PCBs, for example, though banned in this country, are still used in many Third World sources of the produce we eat), and the industrial runoff in our ground water. No carcinogen has been linked definitely to human breast cancer yet, but many have been found to cause the disease in mice, and the inexorable increase of the disease in industrialized nations-about one percent a year between the 1950s and the 1990s-further hints at environmental factors, as does the fact that women migrants to industrialized countries quickly develop the same breast-cancer rates as those who are native born. Their emphasis on possible ecological factors, which is not shared by groups such as Komen and the American Cancer Society, puts the feminist breast-cancer activists in league with other, frequently rambunctious, social movements-environmental and anticorporate.
But today theirs are discordant voices in a general chorus of sentimentality and good cheer; after all, breast cancer would hardly be the darling of corporate America if its complexion changed from pink to green.
…
In the mainstream of breast-cancer culture, one finds very little anger, no mention of possible environmental causes, few complaints about the fact that, in all but the more advanced, metastasized cases, it is the “treatments,” not the disease, that cause illness and pain.
…
Even the heavy traffic in personal narratives and practical tips, which I found so useful, bears an implicit acceptance of the disease and the current barbarous approaches to its treatment: you can get so busy comparing attractive head scarves that you forget to question a form of treatment that temporarily renders you both bald and immuno-incompetent.
Fascinating stuff. That last line reminded me instantly of one of the major points of the graphic novel Persepolis, which I’ve recently finished; in distracting the population with head scarves and the length of women’s shirts, radicals and dissidents can be distracted away from the cause of revolutionary action. For the record: thyroid cancer is increasing in frequency more rapidly than any other malignancy. It is now the 8th most common form of new cancer among young adult females. And in case you didn’t know the cause: at high risk of thyroid cancer are people who have been exposed to radioactive particles from atomic weapons tests and nuclear power plant accidents such as the 1986 Chernobyl disaster in the former Soviet Union. I’m told the Toronto region has one of the highest rates of thyroid cancer. But I guess the best thing I can do is go shop for scarves to hide my scar and keep on being brave, right? The idea of making room for anger in cancer care absolutely fascinates me.
As you can see, it’s starting to fade out in spots. I’m taking these pictures with my laptop’s built-in camera (and Photo Booth), and I think it takes a bit of red out of it, but that’s roughly what it looks like. The faded out spots have no ropey scar tissue (or stitches?) underneath it, while the redder parts still do. At first it was one solid ropey line under the skin, with the thinnest possible little sharp scab across it on the surface. (The scab came off after the first day sans dressing.) Since then, bits of the ropey line have been falling back and feeling normal, making it bumpy to the touch. It’s like a line that’s being erased in random places. Very strange.
It seems to me, given the way it’s healing, that you can sort of guess at how the incision was made. You see the red dot in the direct middle of it…it’s healed down to nothing on either side of the direct middle, but there’s a half-inch bump in the very centre of the incision. So I imagine that he started with the scalpel in the middle, and then dragged it outwards, first on one side and then on the other, with the least amount of pressure at that point directly after the puncture, but a bit more on the ends. It’s like he was doing some geometry homework on me, and that’s the only comparison I’m qualified to make.
It still doesn’t hurt, in case you’re wondering. But I think I’m starting to get a bit of feeling back around it. I don’t even notice it feeling tight anymore. The skin is (mostly) back to its stretchable self. Surgery is really not the hardest thing about thyroid cancer, not by a long shot. The human body is an amazing thing, and I’m frankly shocked at how well it bounces back from being sliced open and sewn back up. Our ability to heal ourselves is amazing. Another thing to be grateful for.
I heard a great episode of Search Engine on CBC radio this morning; it started with the idea of an internet bill of rights (to be continued), and then goes on into the details of an outstanding story about how an internet community caught a car thief (using bulletin boards, photo sharing, youtube, and even ebay). While people often see the virtual world and the real world as starkly separate (one being for losers and one being legitimate), this story shows the intersections of the two both in healthy, positive ways and also in quite disturbing ways. The show then goes on to an equally fascinating story about the main editor and protector of Hillary Clinton’s wikipedia page. Wikipedia is often demonized among librarians, educators, and the general public, and this story, the story of one editor with one particular interest, is timely and interesting. He explains how he does and doesn’t control the fate of what’s on that page, how people constantly try to vandalize the page, and he and his fellow committed editors keep that page accurate, and how their edits are vetted by others. Anyone can edit wikipedia pages, but it also follows that anyone can keep them fair and accurate, too. The show then ends with a short bit about net neutrality by Cory Doctorow.
The CBC has gone all interwebs lately!
You can hear this episode of Search Engine here:
http://odeo.com/flash/audio_player_tiny_gray.swf Click to listen.
To subscribe to the podcast using Itunes click here.
I had my second, unplanned nuclear scan nearly a week and a half ago now. I didn’t want to say too much about my current status, because it feels so very uncertain. The second scan wasn’t as complete as the first; it was about 25 minutes of lying extraordinarily still while the machine took its pictures rather than a full hour it took the first time. When I asked the technician why I was doing this again, he said, “It’s technical. It’s not you.” So perhaps it was just an unreadable scan? I’m not sure. I haven’t heard anything from the hospital since. I got the call to come back for the second scan 9 days after the first one; it’s now been 11 days since the second one.
I wish someone would call me and say, “It’s over! You’re cured! You no longer have cancer!” but I guess no one gets calls like that. Ends with a whimper, not a bang.
As my endocrinologist told me to, I took my first thyroxine pill after the first scan. And the way I interpreted after was in the bathroom of the nuclear imaging department at the hospital directly after they finished. Perspective: I had been severely hypothyroid for weeks at that point. I had a horribly hoarse voice, I was irritable and anxious, I spent most of the time groggy and tired, my body movements were slowed down dramatically (meaning I got in a lot of people’s way on sidewalks because I walked so slowly), my body temperature was dipping under 35 degrees, and I was getting married in three days. I was very pleased to take that first pill.
How long would it take? I have to admit, while getting rid of hypothyroidism does not happen overnight, the following morning my voice was slightly less rough, and I felt very slightly less groggy. (Defining “groggy”: every morning with my parents, my mother got out of bed around 9:30 and made coffee (tea for me) and breakfast. Directly after surgery, I got up about 2 hours before that and read books or checked my email. Toward the end of this experience, I woke up hearing her in the kitchen and wished I could go back to sleep. At my worst, I got up, went into the kitchen to say good morning to my mom, and while I understood the words she was saying back to me, I couldn’t make sense of the sentences. I was so groggy I couldn’t parse what she was saying to me until a good 20 minutes or so after I started drinking my tea.) The next morning, my voice was definitely getting better. I felt very positive.
What I didn’t realize is that the body picks and choses which parts it wants to heal first. I guess that makes sense; when you’re out in the cold for a long time, your body decides to give up on your limbs and focuses on your core functions, so why should it be any different in this case? My voice got better fast, my grogginess receded, my body temperature started going up pretty dramatically, but suddenly I had swollen and achey wrists, ankles, knees, and hips. I had no idea that was part of the deal, even though I’d been staring at a list of symptoms for weeks at that point. I was getting puffy around the eyes. It’s as if parts of me got better and other parts got worse. I started to read about theories about fibromyalgia/chronic fatigue syndrome being actually just a manifestation of hypothyroidism (tired, sore joints, muscular pain). I also started to notice horrifically dry skin; I could sand my walls down with my elbows. I wasn’t really in an ideal physical state for my “honeymoon”. While I was pleased to see Jeremy again (finally!), there I was: tired, irritable, achey, slow, and not much fun.
Today, it’s been two weeks since I started taking thyroxine. It’s also the beginning of projected double-digit temperatures in Southern Ontario (they’re projecting 11 C degrees today, 14 C degrees tomorrow), so it’s the first week that’s really felt like spring. Coming out of a hypothyroid daze is very much like coming out of a kind of hybernation, so this all feels very well timed. Today, I feel a bit clearer in the head. I have a bit more energy than I’ve had in a while. I can’t quite remember what “normal” feels like, so it’s hard to compare, but I think I’m getting there.
I heard a bit on the radio about the internet and microcelebrity, but I only caught the tail end of it. I found an article about the idea here, written by Clive Thompson of Wired, and found that it really resonated with me as a tip-of-the-iceberg kind of idea. I wish this concept were more widespread in online discussion, and it’s implications more carefully considered. Even for those who know about it, few really take it seriously. I mean, Tay Zonday doesn’t really need serious deconstruction, does he? We watch him, we talk about him. So what?
I’m disturbed by our tendency to create and worship at the altar of alternative authority figures in online communities, and then to scoff about the whole thing because it doesn’t matter.
This is primarily why I hestitate over studies like Walt’s which seek to quantify popularity in the world of librarian blogs; I fear the creation of a hierarchy within this online community. Creating a list of popular bloggers creates more visible, more defined, and authoritative list of our community’s microcelebrities, encouraging others to vie for the top spot and pay closer attention to these community leaders. In reality this happens anyway, regardless of whether you quantify it, so I suppose I shouldn’t be so skittish about lists. But I feel like we don’t consider the implications of this microcelebrity enough, that we don’t stop to deconstruct the process enough and see what kinds of behaviours we unthinkingly adopt in its presence.
I’m interested in what it means to be a microcelebrity in any community, because I’ve seen in turn destructive and counterproductive so many times online. Why does this happen? Most people start doing what they do, putting themselves online, for a set of self-defined and often unique purposes: they enjoy writing out loud, they enjoy participating in a community of like-minded people with similar interests, they enjoy the challenge of alternative perspectives, they want a place to react and respond to the things that go on in their daily lives. They like to record their own growth and be urged on in that growth by people they do and don’t know. They want to get some feedback on something they’re doing, get some reaction and attention, perhaps. They want to create an online presence. Most people (I imagine) don’t enter into an online community with the goal of becoming one of that community’s celebrities; most people don’t realize that all online communities have their own homegrown celebrities. We don’t conceive of celebrity that way, and we don’t, as a rule, know the internet and it communities well enough to know that this is what happens. But I have never seen an online community that didn’t have them. It’s rarely a positive experience for anyone, even though “it’s not real” and “it doesn’t matter” and “who is it really hurting”. It hurts us. It reflects the way we build our communities, and being conscious of it will hopefully create a richer, more diverse environment.
What does it mean to be a microcelebrity, known in other circles as a BNF? It means that everything the microcelebrity writes about or focuses on gains more attention than it would otherwise; microcelebrities set the topics for discussion within the community, because everyone is reading what they say and wants in on the conversation. If the microcelebrity develops an interest in something relatively ignored to that point, that interest becomes a new fad. The microcelebrity coins terms that have currency in the community. The ideas, rough drafts, or work of the microcelebrity gets lots of feedback and response in the form of comments, forum posts, tweets, or blog posts; the work of the microcelebrity is more often cited and built upon than that of others. The ideas or work of microcelebrities become goalposts of the community, and everyone else is often compared against them. It’s a powerful position, but that power is often invisible to the microcelebrity, who is often just trying to do what everyone else is doing without recognizing the influence they’re having on the community at large. This definition of celebrity is so absurd to people that the power that comes with it is difficult for them to comprehend. It often feels like microcelebrities “run” the community, when in reality they do not and cannot. Their interests and activities just consistently receive more attention than that of others in the community.
It all sounds pretty positive, but there are downsides, and I think those downsides are dangerous for a healthy online community. Being under a microscope constantly by one’s own community of peers means that the microcelebrity is required to be increasingly careful about what kinds of ideas they espouse lest they inadvertently quash someone else’s project or cause drama. Clive Thompson writes: “Some pundits fret that microcelebrity will soon force everyone to write blog posts and even talk in the bland, focus-grouped cadences of Hillary Clinton (minus the cackle).” He doesn’t believe this is likely, but I’ve never been involved in a community where I haven’t seen it happen. As soon as everyone is staring at you all the time, and the slightest negative opinion sends some part of your community into a tailspin and your inbox to fill up with hate mail, things do get pretty bland. We talk about celebrities (micro or otherwise) as if they are not flesh and blood people; we can talk about them negatively without imagining that they would ever find and read our words about them. We curtail the people we read the most, in the end. The microcelebrity’s views and interests become more mainstream because mainstream is what we want from them; we want them to pet our egos, support our projects, and not stomp on any emerging subcultures or fledgling ideas, and we want to be able to eviscerate them for everything they say and do, as well. Why do we do this to each other? Why is this necessary? (Ask Jessamyn if she gets any hatemail. I bet she does. Do you?)
People approach microcelebrities to pimp their project or their posts, because the approval of a microcelebrity has such great weight; people post comments on these people’s posts just to get their names out there and visible within the community. People put microcelebrities in their feedreaders just to keep track of what they’re paying attention to, either to repost and respond to it, or possibly just to mock it. People get scornful of microcelebrities and everything they say and do, just because there is always a group of people who want to define themselves against what’s popular and shaping public discussion. Microcelebrities will always be judged as not as smart, interesting, or up-to-date as whoever is trying to build themselves up in their shadows. (“Why does she get all that attention? She doesn’t deserve it.“) They become heroes and an anti-heroes at the same time. It’s junior high all over again, and what disturbs me the most is that we don’t ruminate often on the nature of our interaction with microcelebrity at all. We don’t get metacritical about the way we build people up and use them as community signposts. We don’t question the way we adopt authority even when such authority is entirely fictional. We naturally shape our online communities that way and then chafe under them without investigating what underpins the construction of a community.
Being careful about what you post online is no great tragedy, but deliberately creating a hierarchy as a collective where a small subset of a community are expected to control topics and opinions, set trends, and give blessing to emerging subcultures, is self-limiting on all sides.
And this is why I object to creating “top 10 lists” of librarian bloggers; I know what ends up happening. People troll these lists for the ones to watch rather than exclusively following the people they would naturally gravitate toward or find interesting. We create a canon. Without the top 10 list, at least the people getting attention at any one time would shift and change a bit more; as soon as we publicly acknowledge those who get most of our attention, we’re starting to build up those hierarchies and cement them.
Microcelebrity is a real thing, and it can have a negative impact on an online community. I’d love to see a community structured to allow everyone to get the feedback and attention they want without any small subset becoming the de facto class presidents. Maybe we’re just not wired that way.
Edit: Seems I’m not the only one feeling uncomfortable with blogs and their communities today.
Jeremy and I fundamentally disagree about this, but I think this isn’t an entirely bad idea. The gist: IBM and Linden labs have teamed up to create an entirely protected space within Second Life where IBM employees can talk without being interrupted or overheard by other Second Life users. There is an argument in the virtual worlds sphere that holds that Second Life, or virtual worlds in general, are only any good if they’re entirely public. Locking off pieces will reduce creativity and is counterproductive, goes the train of thought.
To me, as long as you can bring objects in and out of locked spaces, I think this is a fantastic development for education. If IBM can lock off a portion of the world, and create new land within in it for their own use, that means educational institutions can do the same thing. I bet IBM will have a public portion (for PR) and a private portion (for work); this would be an excellent example to institutions, who could collaborate on a joint public zone, where all participant institutions could have a storefront (so to speak) for recruitment and public event purposes, and then a private area where their classrooms and sandboxes live, protected for the moment while they’re still in flux. There could also be a space in the public, shared display area to showcase excellent builds and projects created within their private zones. Additionally, in an ideal world, each institutions libraries would take charge of archiving projects and builds that, with permission of course, could be “loaned out” to other students/institutions for academic purposes. So if someone creates an excellent historical build that sits in display for a while and then moves to archives, another instructor could borrow it for a class, and have students from another institution wander through it for a week or two as part of their preparatory reading. Students should absolutely get credit for it, too.
Having a public area and a private area for students allows instructors to keep students in a protected area when required, but would also allow them to use Second Life as a virtual universe to explore at the same time; while many people are concerned about the wild west mentality that pervades some elements of Second Life, a private launch pad would allow students to find their feet before moving into the more diverse parts of the space. It would also put land use in the hands of the institution, which I think is a key part of creating coursework builds.
I just don’t think this kind of structure is possible given the current land organization and administration.
I would never have imagined that IBM enclosing space in a virtual world would ever seem like such a positive step forward for the rest of us, but it seems that way to me!
Thanks to the lovely Tracy Kennedy for this one: What happens in the virtual world has real world impact.
People assume that, if anything, online activities emanate from offline lives. But Mr. Bailenson and his colleagues have shown the reverse. Their experiments demonstrate, for instance, that people who watch their avatars — cartoonlike versions of themselves — gain weight from overeating are more likely to adopt a weight-loss plan in real life.
As Jason noted, this isn’t actually a new finding, as amazed and awed as the academic world appears to be. I’m happy that people are finally paying attention to virtual worlds, because I find them rich and fascinating and full of potential. Reading this article reminds me of Richard Bartle‘s excellent reaction to virtual worlds media coverage from a few weeks ago:
Now I’m in a bit of a quandry here. On the one hand, I want more research on virtual worlds and don’t want to discourage people from doing it, but on the other hand, this is just slapdash and slipshod. The authors seem to believe they have stumbled across an unresearched area, ripe for consideration; actually, it’s a well-researched area, and their belief that it’s virgin territory merely exposes their ignorance.
Feels like we’re fighting a losing battle on that front; it looks like we’re just destined to reinvent the wheel on virtual worlds. Unless we want to get our act together and get a real book out there? I think we have an article in revision to get to work on, Jason!
So, like many librarians, I have a facebook profile. It doesn’t tell you all that much about me on the public face, and all that it does tell you is quite deliberately public information. However, we know that there are always issues with social networking sites because of third parties swooping in and abusing that database for alternative purposes. Check this out: a place I’ve never heard of called Bigsight.org scooped my information and created a webpage for me. It snagged my facebook profile picture to pretty it up, too. They’re not just stealing it from facebook, which would at least just be the sin of stealing bandwidth; they actually stole the image and resaved it (creating a new instance).
Another example of why it’s important to be extraordinarily careful what information you add to social networking sites, and how public you make it.
Just starting to follow a feisty discussion around the use of the term “librarian”, helped along by Rachel Singer Gordon’s excellent post on librarianship’s attitude toward library paraprofessionals here. I must bow to Dorothea, who breaks down the idea of “profession” and how librarianship fits in in her post here. A teaser:
Profession is monopoly labor protectionism, driving up the price of the Elect. End of story. All the training, all the oaths, all the conferences, all that other stuff amounts to pissing in a circle to mark territory, hoard resources (i.e. jobs and social status), and keep the unwashed out. Where an individual doing a particular kind of work can more or less swan about naming her own price, labor perceives no need for the trappings of a profession.
What a fascinating and powerful exchange.
Ahhhh here we go again. Someone, this time someone named Damien Van Vroenhoven, has not only decided that he understands what a blog is across the board (a form is not a genre, as a general rule), but he knows what 10 questions any blogger should be asking his or herself before posting on the interblag. Though I’d say the first question any blogger should ask is whether he or she wants to take advice from an online marketing blog, but that’s not on the list of questions.
“If you want your ideas and opinions to spread across the Internet, you need to make sure that your readers can understand what you’re saying as quickly as possible,” writes Damien. “Make sure you have the right content, links, images or titles in place to communicate your blog post’s purpose as concisely as possible.” I never write concisely on my blog. My blog isn’t about being concise. And I’m not particularly interested in my ideas and opinions being spread across the internet, either. Sharing ideas and musings with a tiny handful of far-flung, like-minded souls is more satisfying than playing the internet attention game.
“Will it entice readers and bookmarkers?” If the only way you can be novel, unexpected, or thought-provoking is by reading the blogosphere and finding a combination of keywords that hasn’t been put together before (as suggested in the 10 Questions post), I’m afraid you’re sitting on a blog I wouldn’t be terribly interested in reading. I probably wouldn’t be to interested in inviting you over for dinner, either.
I find the “fill a need” bloggers an interesting, though not new, development. I understand the logic. If you’re filling a need, your traffic will go up; write to the audience and give them what they want and watch your popularity soar! I’ve seen this done hundreds of times, I’ve even gotten caught up in it myself to some degree in other contexts. It’s an easy trap to fall into; we seem wired to respond to positive attention. Because you can easily quantify the numbers of readers, it’s easy to feel that progress means making that number go up, even if you’re not in it for the money or the marketing. We tend to make an economy out of everything, even when it doesn’t really serve us that well. Is blogging about getting more positive attention, or is it about something else? I blog to connect with people, to mark my own thought process, and to push myself to articulate and build on ideas rather than just letting them fall by the wayside. My blog serves me far more than it serves anyone else. And that’s the way I like it.
For the kind of blogging I do, and the kind I like to read, I prefer to focus to be on the needs of the writer rather than mine as a reader. I know how to get information that’s well-cited and researched. When I’m reading blogs, I’m looking for a personal spin on a topic, a personal epiphany from which I can derive inspiration and motivation. I’d rather see someone work through a thorny issue hundreds of others have already sorted out in their own unique way, using their own unique experiences, than watch people constantly try to anticipate my needs in order to keep me interested in reading. I find that attitude distasteful, as it is both servile and self-serving at the same time, and inherently, in my opinion, dishonest. I like honesty in a blog, a sense of the genuine. That’s what a lot of online marketers have failed to understand in the past about online cultures; real people thinking out loud is more consistently sought-after in the long history of blogging than journalism and marketing has been. And as Aleks noted not too long ago, I’m not the only one who hates a fake.
“Conduct polls on your blog if you are uncertain about how to establish your personal blogging style. If you openly ask for user input, chances are good that you will receive it. Act on their responses openly and honestly.” I have actually seen personal bloggers do this, bloggers not working within the IT industry or representing a corporate face. Your personal blogging style should not be dictated by your audience anymore than your fashion sense should be dictated by your neighbours’ tastes. Real trail-blazing is never done by people trying to appease an audience; truly unique art and ideas are always shattering, painful, and shocking for human beings until the idea makes its way into our larger collective consciousness and we can make sense of it. Think of Stravinsky’s Rite of Spring, which moved from a shattering experience that caused riots to making it into Disney’s Fantasia within a few decades. The novelty of his creation was so confusing to people that they hated it at first, and then came to love it. Now his music doesn’t seem so shocking anymore. We have a collective intelligence, and it cannibalizes the newest of the new in order to refine our sense of order. You can listen to this very thesis expounded by the bright folks at Radio Lab:
New things are hard for people to comprehend; exploring them in public might not make you popular. Popular ideas are rarely truly novel and unique (though they sometimes are!). If you keep a blog about brave new concepts in a world that doesn’t particularly enjoy new concepts, brave or otherwise, does that make you a bad blogger? Does unpopularity always indicate uninterestingness? Were Edward Said and Michel Foucault ever best-selling authors?
This advice isn’t for “every blogger”; this advice is for corporate, IT-based bloggers hoping to use blogging as a form of viral marketing. I think the questions every blogger should ask him or herself instead are these:
1. What role do I want my blog to play in my life? This question should be revisited on a regular basis.
2. What kinds of things do I want to blog about, and what kinds of things do I not want to blog about? Another question that should be revisited at regular intervals. Is it wise to blog about your husband’s annoying habits? Should you be going on at length about your son’s therapy? Are you going to hurt the ones you love with your random and permanent online etchings?
3. Am I okay with everyone I’ve ever known/met/loved/hated reading everything I write on this blog? Because it’s hanging out there in public (unless I make sure it’s not).
4. Do I need to blog under an assumed name? This is especially important for anyone under the age of 25. You never know when you’re going to change careers and have something you wrote online when you were 15 come back to haunt you. Unless you really trust that you know what you’re doing, the answer to this question is probably yes.
5. What kind of impact does blogging have on me? Do I like it? Some people find blogging boring and/or stressful, but do it because it appears to be the norm in the communities they move within. Some people blog for the sole purpose of collecting comments from readers, and are constantly disappointed when they don’t get what they feel they deserve. Personally, I think blogging is best when it pushes you to think more deeply, make more connections between ideas, and revisit issues more regularly than you would otherwise. If blogging isn’t enriching your life, why do it?
Edit: Since a couple of people have asked for clarification, I’ll repost a comment I left elsewhere regarding why many people should consider blogging under an assumed name:
That comment wasn’t really directed at the library world, where named blogging is more normal. I was thinking instead of folks like Bitch PhD, who use their blogs to talk about professional, political, and personal matters, and don’t feel that the blog would really enhance their professional profile.
It’s not really a matter of someone working out who you might be, though. If someone is a big fan of a pseudononymous blog, they can often work out at least roughly who and where the author is. It’s more about protecting your googleability, and controlling what your parents, friends, exes, and future (possible) employers find out about you (and when). The moment your real name is on a blog, it will come up (close to) first on Google when someone searches for your name. That’s got to be a very deliberate decision on your part.
There are some interests and hobbies you might not want your patrons and colleagues to know about, but you might want to put on the internet anyway. A dear friend of mine, a faculty member in Vancouver specializing in literature, also happens to write bawdy fanfiction about television show characters, and is extremely popular in that subculture. She does not attach her real name to that blog, and while those of us who know her well know about it and can see her real self through that persona’s blog, her students and parents and colleagues can’t google her and read about her television musings. She was profiled in a national newspaper a couple of years ago, a full page spread about her hobby and issues around copyright/intellectual property. But still, no real name. She thought about what it might mean, and hedged her bets. Lots of people have been fired for the contents of their blogs, rightly or wrongly.
But as noted by the age thing, I mostly recommend pseudonyms for teenagers and undergrads. I’m sure you’ve heard about the issues around facebook, where young folks think that no one will ever find their drunken party pictures or their jealous break-up musings. The librarian blogosphere doesn’t really contain these things, but the blogosphere in general is stuffed of those kinds of mostly-personal blogs. Stopping to think about these issues is pretty key to information literacy in 2008; not the literacy skills needed to necessary find information (though it surely relates to understanding how information is found), but the ones needed when creating information.
The Miami Herald says farewell to one of their quirkiest librarians in an honest, funny, and touching obituary that reminds me of a few other librarians I have known:
”We all did everything back then,” Nemeti said. “She was a database editor, then photo librarian. She had encyclopedic memories and knew how to ferret everything out of the files.”
She loved management conspiracy theories and gossip, and treasured her grudges.
In a bad mood — which was often — she could be mean as a snake. But she cared deeply about the colleagues she liked and turned herself inside out for them.
”She was a natural news researcher who loved the news, loved the work and loved helping reporters,” said one-time boss Elisabeth Donovan. “But it requires a calm demeanor, and Rose was never calm.”
She was, however, frequently kind, attentive and motherly, committing small acts of generosity like bringing a colleague designer jeans from a thrift shop and reminding another to keep his head up and “not let the bastards get you down.”
Former library colleague Ruthey Golden recalls that her friend ‘was always buying some homeless man or woman food. I know one cold day she came to work with no coat, crying. I said, `Rose, what’s the matter?’ She said, ‘I had to do it, Ruthey. . . . I just gave that woman laying in the street my coat. I feel bad for her.’ That’s just how Rose was.”
One of the many salty, multi-faceted, genius librarians who made our profession great. [via one of Jeremy‘s RSS feeds]
I thought it was finished, but it’s not. And I don’t know why. I have another scan tomorrow morning, first thing. The hospital called this afternoon. They tell me it’s not uncommon for doctors to request a second scan, but it’s clearly not routine, since we didn’t book it last week or the week before.
In spite of all the adjectives people have used in reference to my posts on this subject, which I felt were ill-suited at the best of times, I’m not feeling particularly calm, brave, strong, or positive. I’m just bewildered and scared. Once again, I’m caught in the space between panic, denial, and hope: it could be something terrible, another cancer somewhere, another surgery looming, another round of radiation. More nausea, more headaches, more fear. Or it could be nothing. Until now, they’ve told me there are no signs, no indication of any spread, lymph nodes negative, all that. My surgeon said: “you’re probably cured.” My endocrinologist cut my radiation dose in half because of my low-risk of any additional tumours. So could be nothing at all. And yet: a surprise call, another repeat test required. The doctor isn’t in until tomorrow afternoon, no one can tell me why.
I want to know why. I’m scared to know why now.
This is the point where you remind yourself that when you have your health back, when your feet are steadier under you again, you will be grateful for it every waking moment. Every damn waking moment.
I snapped this picture ages ago and forgot about it sitting on my phone. What a revolutionary new service, where you can text and get a text answer about anything! Only two dollars a call!
I generally call this “IM a friend whose online while I’m not”. God forbid they learn of this service and start charging me.
It would be cool if libraries started doing this, though…text questions. I bet most of them would be directional. (“Where’s the nearest Gap?”)
Radioactive isolation wasn’t exactly boring. It was sterile and stark, with absorbent squares of paper taped to the floor in places I might walk, chairs covered over with them, tables draped in them. We had a terrible storm while I was in there, which may (or may not) be the reason for the terrible headache I got that just would not go away.
I arrived Thursday evening, earlier than they expected. Technically you don’t have to be in before 9, but I was exhausted and my parents had an hour drive back home to contend with, so I arrived at about 6:30. The room was a little frightening in it’s utilitarianness. Somehow this seemed less like a spa and more like…I’m not sure. Like entering a leper house, perhaps? Something where your contagiousness dominates so completely that anything else is constantly secondary. My parents must have felt it too, because they both hugged me before they left. They only do that when they don’t expect to see me for months at a time. I got a little weepy. I felt very scared and very sad and very alone. That first night I slept very fitfully, and some man from the ward kept wandering into my room. Three times between 11pm and 2:30am. That was a bit off-putting.
Things I needed to do: bathe at least twice daily, change the sheets and my hospital gown each time I did; never ever touch the floor barefoot; flush the toilet 3 times every time I used it; wash my hands religiously; rince out all food containers and put them in a garbage container that would stay in the room with me the entire time, just so that I didn’t have rotty food smells drifting over me while I was there.
Bleary-eyed but in a more positive frame of mind, I got the dose on Friday morning, and they opted to give me only one pill rather than the anticipated two; only 105 millicuries of radiation. (I found it strangely comforting that they measure in Curies; I had a lovely book about Marie Curie as a child, and the doseage reminded me of it.) This reminded me that I am one of the lucky ones whose cancer is not expected to have spread, so that greatly reassured me. The pill itself was kept in a little radioactive-safe container, like something out of James Bond. They watched me take it, I suppose in case I changed my mind, and then left me for a few hours. I felt nothing at all, no nausea, no pain, nothing. Then a nuclear medicine technician came back with a geiger counter to see how I was doing. “Perfect,” she said, and then she left. She was the last person to enter the room before Monday morning. I was in a pretty good frame of mind by then. Everyone had been extremely friendly and helpful, and I was told that because I’m on such a low dose, those rules pasted on the wall (the YOU MUSTs and the PLEASE DOs) only really applied if I felt like it. She told me I could change the sheets “if you need something to do.” I felt bathed in grace and thankfulness that I was in the optional camp and not the “we are genuinely scared of you” camp. I guess that’s what so put me off, I felt like I was becoming some kind of biological weapon, and everyone knew it.
The first day was good. Mostly I just read a book, but I watched some tv in the evening. I felt absolutely fine and very positive about the experience. My earlier fear abated. Nurses knocked on the door and left things on a table for me, and I would open the door and pick it up. Once, a nurse actually poked her head in to see me, but mostly I didn’t see anyone. They would call a few times a day to see how I was doing and if I needed anything, and without fail they called me “sweetie” or “honey”. Given that I had no direct contact with other people, I actually quite liked this.
The second day, the storm started, and my head and eyes started to ache. I slept well but woke up feeling exhausted and uncomfortable. I ate the little breakfast they gave me and went right back to sleep until noon. I felt a little better in the afternoon and read for a while, but by evening I had put in two calls for tylenol and felt a little rough. I was awake for no more than 10 hours that day.
I had an important realization at this time. The ward where I was staying was not, as I thought, a generic “place where sick people are”. I don’t know why I even thought such a place existed. I was on the oncology ward. Well of course I was, right? Where else would I be? But somehow, this just struck me like nothing else had. No wonder everyone was calling me “honey” and “sweetie”. I came in with braids in my hair flanked by my parents. I was clearly the youngest person in the ward by about 20 or 30 years. And it put my room into perspective pretty damn fast: this wasn’t just a room for people undergoing radioiodine treatment. You can get radioiodine treatment for a few different things, including hyperthyroidism. This was a room for people 4 weeks out of a total thyroidectomy aurgery whose pathology had come back “carcinoma”. Everyone in this room spends 4 nights and 3 days, pacing in the same way, flushing the toilet the requisite three times a zillion times a day, drinking tons of water to keep the radiation moving quickly out of their kidneys and bladders. How similar we all are, how rigidly similar our experiences would be. I felt like a piece on an assembly line; I felt kinship. It made the process both easier (I’m one of the lucky ones, remember) and harder (my membership in the league all the more defined and definite).
The third day started much as the second one did, with a desire to go right back to sleep, which I did. But this time, when lunch rolled around, I felt a wave of nausea. Nausea is a common symptom of radiation, but it’s usually after you take the pill. I didn’t actually throw up, but when lunch arrived (pasta) the smell of it threatened to push me into the absorbent-sheet coated bathroom for fear of bringing up all over my sterile room. I wished I hadn’t brought it in; now that it was in the room, I had to deal with it myself. I left it sealed up in its microwaveable glory and pushed it into the farthest corner of the room. My legs ached, my head was pounding, my eyes were sore, and my stomach was…touchy. I made an early call for more tylenol and tried to take it easy. The nausea passed, but I still never entirely trusted my stomach. I ate the dinner they gave me (shepard’s pie with green beans), but I didn’t entirely feel confident in my belly again.
I bathed fairly regularly through out this. I would split up bathing chores; once, just wash self; another time, wash hair. I brought in a salt scrub and took my time scrubbing my elbows, my feet, my legs, my knees. My hands were getting dry with all the constant washing, so I spent some time scrubbing them too. It was soothing, and made me feel somewhat less plague-ridden.
And I woke up on the fourth day, ready to push back the stone in front of the tomb and walk away with the story of my time in this unique and quiet little hell. I didn’t get bored, no, not as such. It was neither as easy nor as difficult as I expected.
Contrary to (seemingly) popular belief, I haven’t actually had any radiation yet, and at no time was my radiation postponed or rescheduled. I cannot have radiation until 4 weeks after surgery, which is officially today. Radiation requires me to be in a state of rather severe hypothyroidism, which I’m most definitely in right now. The last few days have been, I must admit, particularly challenging. I’m officially checked in to the hospital now, and out on a day pass. I spent most of the afternoon finding a parking spot and failing, trying to work out where to register at the hospital, registering, waiting for the nurse, getting debriefed, and finally making some decisions about what is and is not coming in with me. I will be incommunicado after dinner tonight when I go back into the hospital and stay there until it’s all over. Which is probably for the best, because I’m pretty irritable and headachy, not to mention utterly exhausted.
I have no idea why there are these rumours floating around about my treatment, and it’s a bit disconcerting to hear about them. I know I posted about radiation and my plan for the experience; I suppose I can just take it as a compliment that my post considering my options was so vivid that people imagine I’ve had the experience. I’ll post a (too) long treatise on it once I’ve passed through it and am on the other side, never you fear.
I’m definitely trying to stay positive, but I’m not out of the woods on this one yet. There’s a fair bit of treatment and recovery left to go.
After I got home from the hospital, my mother said, “There! That wasn’t so bad after all, was it! You were all scared over nothing!”
It hadn’t really hurt. I had had no complications, and I had been released early. I had been in a terrible panic leading up to the surgery, and a terrible panic as they put me under the general anesthetic, but in spite of the lack of pain, I can’t say I was scared over nothing. Knowing what I know now, I can’t even project myself backward as any less scared than I was.
I was scared from the first biopsy last June, though I clung to the mild confusion of the attending doctor who couldn’t work out why we were even doing the biopsy. A long-standing goitre, probably the result of Hashimoto’s thyroiditis; why were we making this fuss? I was reassured by his unconcern. But when they asked for a second biopsy, I felt a quiver in the pit of my stomach. I didn’t entirely believe it, I thought I would be vindicated, but I had this sinking suspicision, this strange clawing that reminded me that I had reason to be worried.
My family doctor told me the results by accident; I went to see him for completely other reasons. “They’ll probably want to remove the nodule,” he said. “You won’t even need to take pills.”
Surgery. That was in October. I knew even then that it was coming, and I wasn’t scared of the surgery per se, but it was something more. Something radical was changing. Someone was going to change my self-perception, me. Someone, something, some diagnosis. There was a constantly shifting diagnosis, lots of caginess, lots of reassurances.
When I finally saw my endocrinologist a month later, she had very little to say. “Two questionable test results,” she said. “That will have to come out. Are you ready to have surgery?” She booked me an appointment with a well-trusted surgeon, and I got into a cab and went straight to the bar.
I’m not sure I can describe what’s so scary about it. Your own body turning on you, hiding secrets from you. I’ve never felt the mind/body divide so much as in those moments, as if my body is a stranger to me. She never said the word, she never said I think this is cancer, but she barely needed to. I felt the words as if she had.
And I felt angry. I’ve had this weird thyroid for 17 years. Has it been sitting there festering, slowly preparing to turn its claws on me, all that time? What if they open me up and discover that I’m a lost cause, incurable, a sad morality tale about not following up properly on medical issues?
That might have gotten to the root of my fear, and the greatest lesson I’ve gotten from this. You cannot trust that someone else is going to look after your best interests. I knew I had a strange thyroid. I clung to the story I wanted to hear, that it was just weird, funny-looking, but otherwise okay. I told every doctor I’d ever had the whole story of how it was found, the tests each doctor performed and its results. “It’s not cancer,” I’d say. “It just looks like cancer.” My certainty seemed to convince a legion of doctors, all the way along. If you want them to leave you alone in your delusions, they will do so. I was angry that that legion of doctors, who should have known better than to trust a 20-something or 30-something when she says that something in her body looks like but is not cancer, allowed me this hall pass into happy, quiet denial. But I was even more angry that I requested it. This was primarily my fault.
When I met with the surgeon in December, he talked to me as if I already knew, as if the words were already on the table. “This is cancer,” he said. So simple. He gave voice to my worst possible fear; not so much that it would be cancer (though that was certainly part of it) but that someone in his position would believe that it was with so much certainty. In his certainty I had no refuge in denial. I wasn’t ready to face it. It was a dark shadow of a possibility that I had been dodging for most of my life.
I was (and still am) scared of cancer. It’s that weird insider who goes wrong, the member of the family who stabs you in the back, the part of your own brain that throws obstacles in your way or distracts you with terrifying ideas. It’s your dark twin, hiding always a few steps behind you, your anti-self, reaching out to trip you up. It’s you; the part you don’t like to acknowledge. Your demon self. The part that runs of to worship the devil and dance with the witches in your absent twilight memory. It’s a nebulous enemy that you have to embrace, because you can’t distinguish it from your friends. But I’m not sure if it’s that that scared me so much, or, not just that.
As my fear drifts away (for the most part), it’s hard to fully capture the motives and logic behind it. I closed up my office on my last day at work and trembled; it was one of the hardest things to do. I would not come back there until it was all over, and that was not reassuring. I would come back with some kind of dark, sad knowledge, I would be inalterably changed. It’s not the scar. It might be the knowledge of my own mortality, as if, on the operating table, I would see the date and cause of my own death written above me on the ceiling. It might be that on my return I would be, without any more reassuring doubts, a person with cancer. I am honoured to be among the many others that bear the title, but was terrified to join their ranks. Talking about how curable it is (which it is!) was less reassuring and more coldly definitive; no matter the outcome, I have now passed by that particular guillotine. It’s shallow and nonsensical, but I think it was at least partly at the base of that fear.
When my friend Jason came to pick up my cat, who would be his houseguest until I returned to health, I collapsed in fear. With him gone, I have more undeniable proof that I would really endure this, it was real. Real, and soon. Denial is a beautiful mask, so easy to put on and hide behind. Each little thing that pushed the mask askew caused me to fall to pieces.
People have often told me that I am awfully calm and controlled about all this. I have no idea where that impression comes from. This has certainly been one of the most uncontrolled and least calm period of my life. My hindbrain has been constantly making me leap and twitch, prompting me to fight or flight and uncontrollable tears and hyperventilation. But fight against whom? Flight from what? The answer is me in both cases.
When I walked into the operating room, I can’t tell you why I broke down, except to say that I was inexplicably terrified. Inexplicable because I trusted the people in the room. I trusted the surgeon, I had no doubt that the surgery would go without a hitch and they would take the best possible care of me. I wasn’t even that worried about pain, because I knew there would be morphine, I knew they would give my any pain killers I needed to make it through. I knew I would be monitored. I can try to rationalize it and say that it had to do with mortality, and facing this evil version of myself that could, in time, kill me. I could say that that moment took me from normal, 33 year old woman on the verge of getting married, with a fantastic job working with fantastic people, to 33 year old woman with cancer. But I’m not even sure that’s at the heart of it. That hindbrain response is powerful. A sort of psychological fight or flight took over, and I just reacted to the fear outside of all logic. There is a point where you just can’t endure another bit of stress, where you just can’t bite it back. There on the operating table I was struck once again by the mind/body split; my body was reacting on its own to the stress, the idea of the tools of the surgical trade which would shortly slice me open. You can only talk yourself out of so much.
A week later when my surgeon told me the truth about what was inside me, it was, on some level, my worst fear. There wasn’t time for me to respond; we had other things to talk about. It was, for the most part, over. It was there, and now it’s gone, and there’s no evidence that there’s anything remaining. I’m not a morality play, I’m evidence of good diagnostics and the value of early detection. But walking out of that office and telling my mother, my father, that their youngest daughter had…I couldn’t even say it at first. I got teary. “It’s over,” I could say. “It’s okay, but…it was. It was.” I’ve already had the panic and fear. That reaction was a quiet little shadow of what fear was there before. I can’t deny it anymore; the reality of this situation is carved into the base of my neck. I suppose I’ve forced my demon self out into the light now. Painful, but less difficult, perhaps, than constantly searching for her.
It may be easier to face truth than possibilities. But I’m still not so sure. The truth is very stark. But maybe the constant dip into denial calls out the demon in us.
Eventually I will get back to interesting posts, the ones about information and educational technology and fun internet things, but I’m currently working on my dad’s 10 year old win98 machine, as my ibook is in the shop, and he’s got dial up. So I’m not using the fun internet things to their fullest. (He at least upped his “one hour per day” plan to “unlimited”, so now I can wait an indefinite amount of time for things to load.) My world is largely dominated by health-related matters at the moment, and since I don’t plan to experience this cancer business again (and, for the record, there’s no reason why I should fear I might; there’s no direct correlation between thyroid cancer and any other kind), so I’m being self-indulgent and recording my experiences and reflections here.
There was a kerfuffle some time ago when a more serious librarian blogger looked down his nose at those of us who don’t post exclusively about librarianship on our blogs within the “biblioblogosphere”, and as I recall a few of us rallied around the idea that our lives are not exclusively about librarianship, and we are healthier people for having multiple interests and experiences to share and ponder. And I will stand by my contention that I primarily keep this blog for me, and I will post as I feel compelled to. In the end, I think it makes me a better professional to see fodder to ponder in all aspects of my life rather than confining it to a tiny strip of “acceptable” material. I don’t get paid to keep a blog. I blog because writing is how I process information, and I like to share.
I’ll get back to the info tech soon enough.
Things that were difficult or seriously uncomfortable in the week or so after surgery: turning my head right or left, bending down to pick something up off the floor, laughing, coughing, sneezing, yawning, lifting things with any weight, sitting up while lying on my back, swallowing, and speaking loudly.
Things that are difficult or seriously uncomfortable today: any tasks that require somewhat significant amounts of energy, mornings (I wake up very tired even after 11 hours of sleep), temperatures below 22 degrees C, keeping warm, shouting, and singing.
Yes, singing.
I hadn’t tried to sing before the last couple of days, but I can’t do it. I can barely hum. It feels like I don’t have enough voice to cover it, as J.R.R. Tolkien put it when trying to describe the effect of a lifetime guarding the great ring: he felt like butter scraped over too much toast.
Perhaps I just need to practice. If you happen to hear a thin warbling sound in your travels, kindly just look the other way.
The part I didn’t anticipate was coping with the scar.
I knew there would be a scar. I knew it would be fairly large, and I knew it would sit just above my collarbone. Prior to surgery I didn’t waste any time worrying about having a scar, as I have never been a particularly beautiful woman who traded on appearances, and have never been especially vain, so worrying about such a thing seemed too trivial and silly. I was more worried about the cancer side of the equation rather than the scar side. But the scar is there, and it needs to be coped with just the same.
While in the hospital, I didn’t want to look at it at all. It was covered in a huge (and largely useless) dressing overnight, which came off the following day. I had no idea what my throat looked like. I felt no pain, but something told me I wasn’t ready to know exactly how bad it was. Better to just concentrate on not ripping anything open. While in the bathroom at the hospital, I didn’t bother looking in mirrors.
Just before I left the hospital I discovered that I had a large oval sticker over the whole thing, with surgi strips neatly covering the wound. I learned this because they took the sticker off. Some friends had come to visit with me and they were in awe how good it looked. So I went into the bathroom and looked. It was a bit bloody, but not much. Just strips of adhesive with a bit of blood on the inside, stuck across my throat like an ultra-modern necklace. I didn’t think it looked that hot, but I was glad my friends were so positive about it.
At first, I didn’t think of it as a scar. I called it the incision. It seemed too soon to call it a scar, and in my mind it still belonged to my surgeon. He made it, after all. It was his handiwork. If this is a grand battle against cancer, I’m hardly the fighter; I’m just the battle ground, he’s the one wielding the mighty sword of clean surgical steel. He made the incision, conducted the battle, and tidied up the theatre of war with some dissolving thread and surgi strips, and called it a day. So at first it was the incision. Distant, belonging to others, a third party location.
Once the surgi strips came off a week later, and I got my first real glimpse of the thing. I was uncomfortable looking at it at first. In fact, I didn’t look at it. The strips came off, my surgeon didn’t offer me a mirror (thank god), I put a scarf over it and left to meet my parents in the waiting room. The first person to actually see it was my friend Mindy, whom I ran into while dropping off some paperwork at work. She said it looked “great”, though of course a little red and swollen. “Great.” I wasn’t sure I was ready to face it at that point, let alone follow my surgeon’s orders of washing it and putting cream on it twice a day. When I finally got home that evening, about three hours later, I did finally look at it. It didn’t look so bad. It had healed far faster than I had expected. It was a long, relatively even red line. There was a very very thin long scab running all the way across it, making it feel slightly sharp. There’s a tiny dimple on one side, possibly a stray stitch, but otherwise it only gives you the slightest feeling that I was pulled back together again by human hands, that slight unevenness that indicates something a bit unnatural. Nothing you can exactly put your finger on. It was then I started thinking of it as the scar.
But it wasn’t my scar. It was this new body part, this extra thing my surgeon gave me. It was external…thing.
It wasn’t easy for me to look at at first. Though once I saw it it was easier. It’s not gory. It’s not bloody. It’s just a red seam.
Some people cannot cope with it at all. They shield their eyes from it, put their hands over their eyes, they would prefer me to keep it hidden from view. As if I’m exposing myself in some obscene way. On one level I understand this, since it took some courage on my part to take the scarf off the first time and really look at it myself. I’m looking at my new normal, my new reality, I’m looking at what is new and what has been lost. I don’t entirely understand why people are so ooked out by looking at someone else’s new normal, however. I’m not dripping blood, I have no gaping wound. There are no visible stitches or jagged edges. It’s very slightly swollen, but not visibly. Is it horrific that I’d rather not keep it swathed in cloth? Is this akin to standing naked in the grass while the commuter train whizzes by? Am I being a medical exhibitionist?
This kind of reaction hurts in ways the incision never hurt. It makes new words pop into my head: disfigured, disgusting, freakish. I seem to have become an untouchable in some circles. I want to ask: do you understand that this scar is permanent? Are you going to avert your eyes every time I come into the room? Or do you expect that I will be a good girl and I will make sure my disfigurement discreetly covered over for the rest of my life? Is that what’s expected of me? Is that the right way to proceed? Do I need to be polite and keep my red line covered up? Forever, or is there a point when I can stop? When it’s no longer red? After a set number of months? I don’t recall reading any etiquette notes on this.
I’m moving toward calling it my scar. Slowly, I’m learning how to claim it.
This is my scar. This picture was taken last week with my cell phone after I put vitamin e on it; it’s actually less red now. And yes, my skin was still a little disturbed by the adhesive. But there it is: there are many like it, but this one is mine.
The classic anxiety dream is the one where you go to work and discover that you’re naked, but my classic anxiety dream is the one where you wake up and discover that you’re a full time student with five courses and you haven’t attended any of them, even though it’s halfway through term already.
Phew.
In general I feel fine, but I get tired very easily.
The next step in my cancer journey is radiation. For many, this involves a machine and doesn’t sound like a terribly pleasant experience. For me, it will (they tell me) involve two pills, three days, and four nights in isolation. The two pills are radioactive iodine, which is absorbed by thyroid tissue. If you have a healthy thyroid, this would be very bad news, which is why they put me behind the lead walls for a time. For me, radioactive iodine should attack and kill whatever remains of thyroid in my body, including the tissue that remains in the wake of the surgery and any potential seedlings the original tumour planted in other parts of my body (most vulnerable being lungs and bones).
I imagine it like those flesh-eating fish, little tiny ones, who are only interested in a particular kind of flesh (dead stuff). And somewhere in the world (I can’t remember where), it’s de rigeur to put your feet in this special little ponds and these flesh-eating fish surround you, pulling off dead flesh and leaving the living stuff. They clean you off, let you start fresh. They say it tickles, having flesh-eating fish clean off your feet. This is exactly what I imagine when I think of the radioactive iodine treatment. They tell me it won’t hurt at all.
But I will be in isolation for three days, four nights. Once I have that dose, they leave me in a room of my own, with a bathroom of my own, and no one, not even nurses or doctors, come in or out. They will call me to check on me, and my dad is convinced they will have me on closed-circuit tv, but for all intents and purposes I will be alone.
I don’t think they have an internet connection in there. (If ever an internet connection was needed, I would think it would be there.) Apparently people find the isolation the hardest part. My endocrinologist’s office recommends getting the tv hook up. Strongly.
I’ve decided to think of it like a spa retreat. Three days, four nights of mud masks and salt scrubs. The paperwork recommends bathing daily while in isolation, because the radioactivity is excreted through your pores throughout the day. Some patients, they say, bathe several times a day. So I’ve decided this three days, four nights will be a celebration of body washes and exfoliants and smelly shampoos.
I’ll get the tv hook up. But I also need books. Right now the only thing I can really wrap my brain around is young adult fantasy fiction. I’ve read pretty much all of Brian Jacques Redwall books, I read Cornelia Funke’s Inkheart and Inkspell (so relentless! So German!), and I’m just finishing Angie Sage’s Septimus Heap series (Magik, Flyte and Physik), which I absolutely loved. Sure it’s a bit Harry Potter, but it’s sweet and funny and the people are inherently good. Any recommendations? I was considering A Series of Unfortunate Events, but it might not have that general feelgoodness that I’m somehow searching for. I want to love the main characters desperately. I want to admire them while still feeling that they’re human. I hate it when I hate most of the characters in a book. I find it disheartening. I should take Spiderwick, that’s a given; I spent one sickly new year’s eve at Holly Black’s house, and I’ve been meaning to read all the chronicles for ages. Any others? There must be a million Harry Potter spinoffs, right? Please feel free to recommend something. I’m going to need to purchase enough to last me three days, four nights, because somehow I can’t imagine any public library would be too pleased about me taking their books with me into radioactive isolation.
A week ago last Thursday, I stepped rather gingerly into Mississauga’s Trillium hospital, not entirely free from the denial of what was going to go on once I got there. I took off my own clothes and put on their little gown-smock and little robe; I even put their puffy “slippers” on. I gave the last of my belongings to my mother, with only the elastics tying up my braids to my name. And I waited until they came to get me. A person undergoing this procedure does not get wheeled into the operating room. One simply walks in, surely a very empowering process.
As my surgeon says, “you were fine until we closed the door.”
I sat down on the thin little bed, with a pillow under my back to expose my throat, and hyperventilated. The last thing I remember was the IV going into my hand, the smell of rubber from the mask over my face, and wonderful, sympathetic surgical team telling me they would take good care of me.
The next thing I knew, I was lying in a darkened recovery room (at least, it seemed darkened at the time), feeling like I was sitting by the pool in the sun at a 5 star resort with a margarita in my hand. I had no idea how much time had passed. I went in at 2pm, and by the time I was fully conscious again it was 8pm. Surgery lasted 2.5 hours, and I was in recovery for 4. They kept asking me if I wanted painkillers, and I couldn’t imagine why I would. I knew what they’d done, my throat felt a little rough, but when asked, I told them my pain was a .2 on a scale of 1 to 10. I felt fine. I was told talking would be a strain (and, if mistakes had been made, impossible), but I could talk pretty well. I didn’t want to be shouting or singing, but the voice made it through okay.
I asked the recovery room nurse if we had been formally introduced, and she said no, we had not, and her name is Mary. I introduced myself and thanked her. She was very kind to me. There was someone else in the recovery room crying and asking for help. Mary told me that some surgeries take a bigger toll than others. I spent most of my time in recovery feeling extraordinarily grateful and blessed.
They transferred me to my room that evening, and I met the night nurse, who helped me move from the very comfortable 5-star bed I was in to the even MORE comfortable bed I would spend the night in. She told me I wouldn’t sleep too well that night, because she needed to check my vitals every couple of hours. I didn’t sleep more than 30 or 40 minutes at a time anyway; I was starting to feel anxious about the thing they had done to me. There was a thick dressing over my throat. It didn’t hurt, but I kept waiting for it to. I kept my head as still as possible to avoid hurting myself.
Checking my vitals included: tapping my cheekbones and cheeks, checking my blood pressure, starting at my open palm, and asking if my lips or fingertips felt tingly. Along they way I learned that these are ways to determine whether my calcium levels have dropped radically. The regulation of calcium in your body is control by glands that sit behind a healthy thyroid (called parathyroid glands), and in fear that they had been damaged somehow in surgery, they were monitoring me carefully. At each of these visits my neck was measured; I had a measuring tape draped around my shoulders for just this purpose. The numbers seemed to be going progressively down. Again there were frequent questions about whether I wanted any pain killers. The night nurse, Carolyn, was also extraordinarily kind to me, and finally, at about 2am, brought me codeine and told me, “it’s okay, it’s FREE!”
By about 11am the next morning I was getting pretty bored. They took the top dressing off the incision because it was useless and totally dry. Underneath was a large, oval sticker covering seri-strips (surgical adhesives) underneath. My drain was emptied and apparently there was very little fluid removed by it. The IV was stuck into my wrist, icily reminding me of its presence each time I moved my (left) hand. (Did I mention that I’m left-handed?) I was starving but I hadn’t been cleared for food yet.
At 2:30 the surgeon dropped by and said, “you’re fine, go home.” Though he told me in pre-op that he would know instantly if my thyroid was cancerous or not as soon as he took it out, he was much more circumspect. He wouldn’t say what he thought, except that my lymph nodes were fine. “Call my office on Monday,” he said, “and make an appointment for Friday.”
The nurses, fantastic people that they are, supported me in my terror of having another panic attack by recruiting a team of three to tell me stories and jokes while a fourth took off the oval sticker on my incision, removed the drain tubes, and finally rid me of the much-hated IV. They all deserve medals of valour.
I went home and slept, and discovered that, while I was in no pain from the incision, I had strained every muscle in the back of my neck/upper back in fear of causing myself pain. For the first time, I gave myself permission to roll over on to my side.
On Friday I went to see the surgeon again. He took the seri-strips off and told me to wash the incision twice a day, and put cream on it. “Any kind of cream. Polysporin, vitamin E, whatever you want.” The idea of looking at the incision gave me the creeps, let alone touching it.
The word: they found a 1.5cm malignant tumour, deep inside a larger calcified nodule on my thryoid gland. No indication that it had spread itself around, and as he had indicated, my lymph nodes (removed at the same time) had all come back negative.
“You’re probably cured,” he said, apologetically. “But we like to do the radiation anyway.”
“Sure,” I said. “Why wouldn’t you.” I’ve looked it up. They call that radiation “the magic bullet”. Because thyroid tissue is unique, they can tie the poison to iodine and destroy only remaining thyroid tissue, leaving the rest of you unharmed. Even if, by some miracle, some cancerous material had moved through my lymph nodes undetected and found new home in my lungs, this radiation would cure me.
It was hard news to hear, though it’s good news, all in all. You don’t get better cancer news than this. But of all these months, it was only the possibility of having cancer that I was contending with. Then suddenly I had the certainty.
When I went home I finally looked at the incision. It’s huge. I knew it would be, but my mother didn’t. She couldn’t get over the size of it. 6, maybe 7 inches across. My father calls me “Nearly-Headless Nick”. It looks like evidence of violence. But it’s healing remarkably well; it’s sealed and unbloody, just a long unforgiving new smile across the bottom of my neck. It feels weird and foreign and I don’t like to touch it; it’s as if I’ve just gained a new body part, when in reality I just lost one.
They had no actual evidence of that 1.5cm. They had a well-educated hunch, and some very deft fingers on the part of the surgeon. This incision will heal into a barely noticeable line, and I will have escaped without having experienced and serious physical discomfort at all. For now I’m waiting, a little chilly and a lot sleepy, for the thyroid hormone to seep out of me in preparation for the radiation. Most of the time, I feel pretty lucky.
All humans are the limbs of the same body, created
from one essence.
If the calamity of time afflicts one limb
the others cannot stay at rest.
You, who remain indifferent to the suffering of others
do no deserve to be called human.–Saadi Shirazi (as translated by my dear Mohamad Tavakoli-Targhi, heard on TVO’s Big Ideas podcast)
I suppose the more information you have the more power you have, but at points I feel like the more I know the weaker I feel. This isn’t something I remember learning about when we talked about information gathering and health informatics in library school, though admitedly these were not areas I pursued. I don’t remember anything about people trying to avoid getting more information about themselves; only about alternative routes toward more of it. It might be what they call “information overload”, but I’ve always sworn up and down that I don’t believe in that. It’s not quite that.
It’s as if I have constructed this very careful house of cards, where each card is a piece of information I would like to believe about myself and my own body. I suppose we all have one, more or less; we accept some failings of our bodies, and rely on other non-failings as part of our self-image. We couldn’t walk if we didn’t believe our feet would hold our weight, of that our joints would cease to swing in mid-motion. Each time a health professional comes at me with something that pulls out one of my supports in this house of cards, my careful construction collapses on one side. But I regroup, I rationalize, I see the bright side. He didn’t really mean that, or that’s just a worse case scenario. She doesn’t really know, or she’s just blinded by her specialty and sees what she wants to see. And people help me in my disinformation reconstruction too: It’s the money, they want to see it this way so that they can get more money from your case, or doctors always overreact in fear of getting sued. So then this phantom card sets up where the old one was. The phantom card that I need so desperately to be real. (It might be real, who knows?) And my house of cards stays up, as long as I don’t think about it too much.
So I luxuriate in my disinformation, or my not-quite-what-she-said information, my hopeful information. Google is a wonderful thing; it can go either way, support what anyone, everyone says.
And then I go back to see the people with the charts and the certainties, and they take another swipe at my house of cards. You’d think the farther along you get the less likely these little offhand comments (things like make her an urgent appointment with the surgeon and you’re lucky, this is one of the curable ones or if you have to pick, this is the one to choose!) completely destroy me. I want to be surrounded by my disinformation. Is that so much to ask? I’m not fighting the recommendations, I’m being a good girl and I’m following all the instructions to the letter. I suppose there’s only so far you can go down that path, pretending to humour your doctors. It’s hard to be that pompous. What do I know? There comes a point where you have to believe them. They’re the experts. They sound ever so certain about what it is, and they’re so reassuring about how everything will be okay.
My surgeon says: You’re going to die of old age.
He points out the part of me with the alien cells in it, the little terrorists, and from that point on I can feel it all the time. A constant, dull ache in my throat. Lying in wait. I’d tear it out with my own hands if I could.
But I still suspect that they’re wrong about it. Or, I suspect they’re wrong a great deal of the time, and a portion of the time I feel the utter terror in the belief that they are entirely right. But they have no real proof. Only an educated hunch. Hunches are wrong all the time. In a matter of days they will slice me open, take it out, and know for sure. And then we’ll see who gets the last laugh.
Guilty on six counts of second degree murder, with two more murder charges on the way. I don’t really understand why he gets second degree rather than first (I mean, after you did it once, doesn’t it become a kind of plan the next twenty-five times?)
What would be a nice result from this trial?
1. Make sex work legal in Canada.
2. Make sure sex workers can be easily located for their safety, and go find them when they go missing.
3. Provide them with a safe place to practice their trade.
4. Give them a living wage.
5. Ensure that they have access to clean, comfortable living accommodations.
6. Develop a regular medical exam regimen to help them stay healthy.
7. Give them a pension plan, dental and eye care, and drug coverage.
8. Provide them with a free college education.
9. Provide support to sex workers with drug problems.
Keeping sex work illegal is dangerous for sex workers, and I don’t know how much clearer that can be. Most of those 26 women would still be alive today of sex workers had be considered regular people like everyone else, people whose disappearance needed to be taken seriously and investigated.
This is isn’t just the work of a mass-murdering swine herder. This is institutional violence against women.
The keynote at AoIR‘s Internet Research conference yesterday was given by Henry Jenkins. I’ve read Henry Jenkins, I’m very familiar with his work and his impact, but I’d never seen him speak before. I suppose it’s true of any outsider/insider community politics that it feels incredibly weird and empowering to hear an academic speaking, in a public and respectable forum, about something so secretive and taboo as online slash fandoms. His primary gift to fandom, I’d say, is that he legitimizes fandom by talking about fandom activities in a non-judgemental way. He doesn’t shroud it in shame. He talks about it like it’s a cool thing to do. That’s a wonderful, wonderful thing to do for fandom.
What he said: fandom is good PR. Media owners give mixed signals. Fandom as collective intelligence, etc. It felt good to hear it in that forum. Definitely.
But when I walked away something else hit me. Sour grapes, probably, or a natural response to the insider/outsider online ethnography: Henry Jenkins didn’t tell us anything fandom didn’t already know. He didn’t say anything that fandom hasn’t already analysed ad nausem. I’m glad he gets it, I’m glad he understands how things work, someone has to be the one to tell the rest of the world how fandom concieves of itself and gets meta on itself, but I didn’t hear him say anything that wasn’t just direct reportage of what’s happening in fandom. I didn’t hear him express something that wasn’t just as well expressed, if not better, within fandom itself. And that made me a bit sad. He objects to media companies taking advantage of fans, but how is this really all that different?
I’m not sure what I really expect from him. But that was the sad feeling I had walking away from that keynote. It’s great that he gets it, it’s great that he talks about it in such positive terms, it’s great that he doesn’t shy away from talking about slash (and in fact, he seems way more interested in slash fandom than gen or het fandom, which is interesting). I wonder if all ethnographized people feel this way; why do you get to be famous for just looking at me and describing what I say to someone else? I suppose that’s the way it works.
He mentioned that he would like fans to get some kickback (money) from the media companies, and someone in the audience objected, saying that their fandom research subjects weren’t in favour of that. He said there was a minority that were in favour, and that it would be a good thing. I immediately disagreed, quietly; getting money for fandom activities is anathema, my gut said no, and my immediate reaction at the time was to say, “since you don’t own the characters to start with, getting money for it is considered inappropriate and dangerous, and would bring negative attention from the media companies that would have a terrible impact on the rest of fandom.” It’s also considered insanely wanky to ask for money for fannish activities. But that only makes so much sense as a criticism; what if it’s the media company handing out the money, and no bad press is involved?
In retrospect, there’s another reason why taking money is problematic, and I think, deep down, it’s this that fandom is reacting too when the money question rears its head. Fandom is not a money economy, but it is an ecomony nevertheless. It’s a complex gift economy, where creative production, feedback, and critical reflection are the products and name recognition, attention and feedback are the currency.
Fandoms are extremely hierarchical, in spite of all attempts to deny that hierarchy and others to subvert it; it’s a hierarchy based on subtle differences in reception, feedback, and attention. A person with high value in a fandom economy (a Big Name Fan, or BNF) writes a blog post about how she doesn’t like a particular kind of narrative, or particular characters, and her opinion echoes out throughout fandom, marginalizing some elements and making it more difficult to get positive attention and organization around those particular characters or narratives. People with high economic value in fandom dictate the nature of fandom, even without intending to. Fandom itself decides who those people are. Each indiividual within fandom is a part of creating that economy and providing the currency that enables that power. If the media companies start entering into the fray and give money to some fans, that utterly changes the way fandom economy works. Now people who get money will be immediately elevated in the fandom economy, but they will probably be seen as corporate shills. They will be seen, I would guess, as fakes; the company arbitrarily blessed them, in spite of them not understanding X or Y, or because they wrote a bad X character, etc. etc. Company blessing is like a parent chosing a favourite child and making a bit fuss about it; it’s unhealthy and builds resentment.
If media companies really wanted to do something nice for fans, there are a variety of creative ways to do it. First: hire them. Hire them to do stuff with them. Fandom liaisons, etc. Create insider/outsiders who can still at least peripherally participate in fandom while communicating to both sides at the same time. This will still cause ripples in the fandom economy, but the media company would be providing one person with information that they can share with the rest of fandom; that works into the natural fandom economy. Don’t pay them for fannish activity in the past, pay them to communicate in the future. The best things media can do is provide more raw material to fans; media companies, particularly tv and film, could release additional footage via their websites, without audio would be fine, for fans to use in their vids (video mashups that create alternative visual narratives). It could be outtakes, but if they really wanted to do fans a favour they could stage footage specifically for use by fans, pairing unusual characters in a scene or creating short scenes that would spur on particular kinds of stories and vids. Teaser video, essentially. That would have the added bonus of fueling the creation of free ads for shows that will, inevitably, pull in more viewers. Another idea, for book fandoms, is to arrange to publish an edited collection of stories written in a particular year; have fans submit work, be transparent about the criteria, and celebrate the writers with the publication. Allow them to maintain their anonimity should they wish to.
Money is not always the best way to reward fandom. Best to look at the internal structure of fandoms and reward them in ways that don’t destroy the economy and culture that already exists.