March 23, 2008
This article in the New York Times profiles a new website PatientsLikeMe.com which is more than your typical online community for people with particular illnesses. As someone who struggled with chronic illness for a long time, I am all too familiar with the affirmation that comes with finding people who are struggling with the same (often undiagnosed or improperly diagnosed) illness that you are – and with the deep sadness, heartache, drama, and misinformation that often comes with people who have not been adequately treated by the traditional Western medical establishment. This new website, though, goes a step further than just providing a space for people to congregate, support, and share information anecdotally. From the Times
At first glance, the Web site looks like just any other online community, a kind of MySpace for the afflicted. Members have user names, post pictures of themselves and post updates and encouragements. As such, it’s related to the chat rooms and online communities that have inhabited the Internet for more than a decade.
But PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.
I think this will be particularly helpful for people whose diagnosis is with something fuzzy or not well understood – perhaps even give people with a collection of symptoms and no exact diagnosis to see that “Yes, there are people who have similar symptoms and X treatment has worked with X number of people.” This is so much more helpful than “My cousin tried this doctor in Upstate New York and she said yada yada yada,” which is very much how people with undiagnosed chronic illnesses often find relief (or not). It would be interesting to see if there is a place to include diagnosis in the tradition of Chinese medicine, since many find that this often speaks better (and better addresses) their problem when Western medicine can’t come up with much. I sort of wish that it wasn’t, in part, funded by pharmaceutical companies, but I must say that I prefer that to it being a pay-site. Although ads might be better than funding by pharma. That said, if it helps them develop better, less harmful, more effective treatments for people…the better, I suppose
March 22, 2008
This is seriously one of the hardest questions of my life. What do I do for fun? What brings me joy? A rush? Relaxation? You know, just fun. If you go back through pictures of me as a girl, a smiling child I am not. I have always been pretty serious.
As the first year of my doctoral work is coming close to an end (only a month a half left), and I tally up the years I have been in school (twenty-three years, not counting preschool and a break from 02-03), I have come to wonder to what extent I have mistaken work and achievement for fun. Or maybe I have the wrong idea of fun, and some of us are just not wired for fun-as-typically conceived (Is writing a paper fun? This is not clear to me). I used to insist that there was too much suffering in the world and that, in fact, no one should be having fun while there was so much pain. Clearly, I have rethought this. I am all for fun and joy and enjoyment. Perhaps, in some ways, it is what makes the suffering in our lives bearable.
But I just can’t figure out what is fun for me. That doesn’t cost a lot. I like massages and vacations. But these are rare and costly. I like to sleep. I enjoy reading and school and even my work. But does this count as fun? I like to knit, but I wouldn’t say I consider it fun. I guess I am talking about letting lose, vegging, laughing, and truly enjoying it. No guilt that you are not writing your paper cleaning the kitchen volunteering at the church doing taxes or swiffering the floor that hasn’t been cleaned for three weeks.
One of the things that I really do enjoy (enjoy=fun? still unclear to me) is blogging so I am going to try to do that more. Maybe I’ll take up sky diving too. Ha. Just kidding. Oh, aren’t I funny. A riot. So much fun.
How do you have fun?
March 20, 2008
I saw this promoted on a UU listserve and it sounds like my worst nightmare. Touching people I don’t know and probably having to talk to them as well.
March 4, 2008
So, I always like to post little things that make me laugh. I was looking up the phase “always already” which is a very hip poststructuralist sort of thing to say. Of course, I’ve heard it used a million times, but I didn’t know exactly who came up with it. I should have known. Of course, our old friend Martin Heidegger and then used liberally by Jacques Derrida. And I found this out at a hilarious posting How to talk like Jacques Derrida. I’m sure this must have been secretly circulated among many professors and students I know. Here is some of the advice:
Use the phrase “always already“: Not only is the meaning of language always slipping out of our grasp, it has already moved on as we attempt to grasp it. What better phrase to express the urgency of this dynamic than to jam together two words which lesser minds would never have in the same room together? Thus, we are always already finding ourselves closer to the Derridean mode of expression.
Become a thesaurus: Why use one word, term, phrase, idiom, when you can use many, multiple, a plurality, two, maybe five words for the same concept, idea, meaning, signified?
Never finish a sentence too early: Always there will come an impulse, a wish, a directive to bring a sentence to a conclusion (a linguistic parole – Barthes’ parole applied to his lang? – time off for good behaviour, the sentence is brought to an end, the meaning is no longer a danger to society: but what could be more dangerous than meaning?), to bring the discourse to a terminus, which is after all merely another starting point, but this desire must be resisted (often through creating another subordinate clause, a subordinate which may grow to resist its subordinator, finally becoming the dominant term in the grammatical relationship, which is, after all, an essentially political one), although when one is quite certain (which is to say, one believes oneself to be certain) that the reader will have forgotten (or rather, neglected to remember) how the sentence began in the first place.