Thursday, August 25, 2011

Full Catastrophe Living, by Jon Kabat-Zinn

This book is about how to cope with a chronic and serious condition, possibly involving intractible pain, possibly that will eventually end your life.  But how to nevertheless come to terms with your condition and continue living as fully as you can.  The major tool it promotes for doing this is meditation.

I've never been the type to medidate.  Too impatient.  Not interested in the spiritual trappings.  Also not especially taken with "meditation lite" as promoted by the medical community -- you know, guided relaxation for stress reduction.

This is different.  Kabat-Zinn is a scientist and also a black-belt serious meditater, who founded a stress clinic at the U Mass med school where they work with patients with chronic pain.  Without much spiritual baggage, the book treats meditation as a form of serious training, like strengthening a muscle.  Unlike meditation lite, it is about mindfulness, not "trying to relax."  Stress reduction is a by-product of consciously, gradually, persistently working to change how your mind behaves.

Weirdly, this book is working for me.  Instead of just throwing around phrases like "mindfulness" and "non-striving," it actually explains what those things are supposed to mean.  I kind of get it now, what I'm supposed to be working towards when "focusing on my breath" and "noticing my thoughts without judging them" and so on.  I've been meditating for 15 minutes a day for a few weeks now, and having no problem sticking with it.  In fact, I kind of need it.

Thursday, July 28, 2011

Oy.

At gym class today the teacher had the kids sit in a circle and practice three positions: "pike," "tuck," and "straddle."  Then she would name a position and go around giving a sticker to every kid who made the correct position.

Hanni wasn't doing too well.  Occasionally she would make the correct position briefly, but by the time the teacher looked at her she was squirming or pouting or otherwise being a 3-year-old.  I thought she just wasn't getting it, what the teacher wanted.  Until she crawled into my lap and said in her clear little voice, "This isn't very interesting."

Friday, July 22, 2011

Dinner

I've decided the hardest part of single parenthood is dinner.

Single people are lazy and spoiled about meals.  We don't have to consult anyone else's preferences or sense of propriety.  Fried egg sandwich eaten in front of the computer at 5:00 p.m.?  Random things dipped in hummus eaten in front of a movie at 8:30 p.m.?  That same kind of burrito from that same burrito place again?  No problem. 

Now suddenly I have to plan healthy and interesting dinners for an impressionable young person.  I think I might also be obliged to teach her to eat sitting at a table, I'm not sure, I'll have to check my contract.

Every night I think, I have to plan dinner again?  Didn't I just plan dinner yesterday?

I did pretty well last night on the spur of the moment: artichokes, yellow cherry tomatoes, chicken legs from the deli counter.  My 3 year old can go through an entire large artichoke and then lobby for part of mine.  (Not a chance, kid!)

Now what the hell am I going to do for dinner tonight?

Thursday, July 21, 2011

Two Radically Different Medical Tales

A Life Worth Living by Robert Martensen is a troubling account of aggressive treatment of serious and fatal illnesses.  He confronts the uncomfortable facts: treatment is often horrifically miserable; in many cases life is only extended a few years (if at all) beyond a no-treatment scenario; those extra years are often taken up with relapses; and with many rare illnesses doctors don't actually know what to do, and are essentially experimenting on their patients without informed consent.

The Patient From Hell is Stephen Schneider's account of his battle with a rare cancer, during which he aggressively pushed his medical team to do more and to try new things.  After a few years of treatment and slow recovery, his story ends with what appears to be complete remission.  It would be very uplifting, if I hadn't read Martensen's book first.

And googled Schneider.  Schneider died nine years after his diagnosis.  His death was not from the cancer but from heart failure, almost certainly brought on by damage from the cancer treatment.

Further, Schneider's account of physical torture involved in his treatment is harrowing.  If you want a blow-by-blow of what cancer treatment is really like, here it is.  Each intervention is not only devastating to the body in and of itself, but also tends to throw multiple other systems out of whack, each of which then needs its own intervention.  It's a wonder the whole thing doesn't go into a state of massive collapse.  (In fact, it often does.  A similar situation arises with attempts to save "micro-preemies."  But that's a whole other post.)

Don't get me wrong, an extra nine years of life is nothing to dismiss.  But also bear in mind that Schneider's survival even for that long was unusual.  Even with recent advances in treatment, the average patient with his type of cancer lives just six years.  And most of those patients spend those six years having multiple relapses.  (See above paragraph about torture.)

Oddly, for all his scientific savvy, Schneider comes across as quite naive about medicine and illness.  He seems to believe that, with enough effort, doctors can flip the switch from "not normal" to "normal."  He was a climate scientist, who was watching a huge intricate system go into unpredictable and possibly disastrous wobbles when perturbed, but he couldn't see the analogy to the individual body.

Wednesday, July 20, 2011

The Hauser Scandal

The scandal involving Harvard Psychology professor Marc Hauser is back in the news.  The latest is that he's resigning, after a year on leave.  (There is no new information about the misconduct itself.) 

Hauser has been found guilty of eight counts of misconduct in his research (inappropriate procedures or even outright fabrication of data), and there is no reason to believe that this is the extent of the problem.  The best we can conclude about the rest of Hauser's work is "unproven."

I'm interested in the reactions of different people in the field.  These range from Dorothy Cheney and Robert Seyfarth (his former advisors), who, though diplomatic in their wording, hung him out to dry, to Steve Pinker, who has vigorously defended Hauser (though interestingly, only on grounds of personal admiration, with no comment on whether he believes the misconduct to be real, or wrong if real).

One can't help wondering (and I get to say this because my blog is anonymous) about the personal world-view that underlies that latter reaction.  I think there is a kind of gun-slinging cowboy mentality that says that all's fair in love and war . . . and in building a reputation.  Even if such a person hasn't actually engaged in misconduct themselves, they might secretly think, It's not so awfully bad, is it?  We could all see ourselves doing something like that, couldn't we?

This is part of a larger complaint of mine, which is that a lot of academics don't get it that building a reputation isn't the main goal.  Reputation is, or should be, a by-product of a genuine commitment to furthering science.

Monday, July 18, 2011

The Unschooling Has Already Begun

(I mean "unschooling" in the original sense, where learning doesn't have to mimic school.)

My kid loves explanations, so I explain everything.  My kid loves words, so I use big words all the time.  This morning she learned the words "parallel" and "pentagon" just in the natural course of play.  By the time she's six, this kid is going to have a bigger vocabulary than the first-grade teacher.  And while it's unlikely that she'll know "more" (i.e. more total) than the teacher, she is certain to know a lot of stuff that the teacher doesn't -- or worse, that the teacher is mistaken about. 

So tell me again why I should send my kid to school?

Why Homeschool? (My Version)

There's all the usual reasons:

- No Child Left Behind is a disaster.

- Kids in school spend only an hour or two a day "on task."

- Elementary school teachers often don't understand the topics (particularly math) that they're trying to teach.

 - Homeschooled kids are just nicer.

I've known many homeschooling families over the years, so it's never seemed like a weird and shocking idea to me.  So for me, the question is not "why homeschool?" but rather "why not homeschool?"  Or to put it another way, "why do school?" or "can I beat the (rather low) bar set by school?"  If my kid can learn more in a year sitting up in a treehouse reading books, (and I use that example as the absolute mimimal, most neglectful homeschooling I could do), then why do school?

The answer is clear: free babysitting.  That's really the only thing public school has to offer a smart, educated, resource-rich family. 

So am I willing to torture my kid with boredom and Lord-of-the-Flies style socialization for several hours a day, for the sake of the free babysitting?

Do you see how I'm painting myself into a corner here?  I don't care if I'm a single working mom.  I've got to find a way to do it.

Sunday, July 17, 2011

What Is Lupus?

Have you ever heard a straight answer about this?

The most they'll say is "It's really hard to diagnose," but what is the "it" that they're trying to diagnose?

Here's my guess, triangulating from several medical sources.  I think lupus (systemic lupus erythematosus) really means "autoimmune disorder, not otherwise specified."  If you have an autoimmune disorder that is attacking your thyroid, they call it Graves or Hashimoto's.  If you have an autoimmune disorder that is attacking the exocrine glands of your eyes and mouth, they call it Sjogren's.  And so on.

But if it's more widely systemic, they call it lupus.

Weirdly, if it's attacking the kidneys, or the skin in the form of a rash, it's also called lupus.  I suspect this is for crazy historic reasons.  So you get doctors making weird statements like "Many autoimmune disorders can be mistaken for lupus, making it difficult to diagnose."  If it's attacking your kidneys, it's "real" lupus.  If it's attacking your thyroid it's not, and must be distinguished from "real" lupus.

Dudes, quit arguing over the words.  The patient has an autoimmune problem.  The only useful question then is which bodily systems are under attack.

What's useful here for me, though, is a clearer understanding that what I've got is really "not otherwise specified."  I test positive for double-strand DNA antibodies.  My muscles and joints hurt.  I'm tired all the time.  And that (knock on wood) is all.  That's what makes my case lupus.

Reading About Lupus

I can't believe it took me two years to get around to reading up on lupus.  I'm a person who reads up on everything.  I guess I've been in denial, which is not something I believe in except that I've obviously been doing it.  I suppose parenting my child through her first three years hasn't left me with much time to think anything, except "Crap, I'm not getting my job done," but what parent doesn't think that?

Today at the library, almost on a lark, I checked out a bunch of books on lupus, along with books about genealogy, art forgery, and other random topics.  I've started reading the first one, and it's finally dawning on me: this is some serious shit I'm in. 

The pain and fatigue are not going to go away.  More serious treatments than what I'm on would leave me immuno-compromised.  The lupus could attack my brain.  And they wouldn't know it, because until you start having seizures or go psychotic, they don't have a way to diagnose it. 

And maybe worst of all, everything about my job is making my lupus worse.  The only way to do my job is to get the lupus in remission, and the only way to get the lupus in remission is to stop doing my job.

I Remember Running, by Darcy Wakefield

You'd think it would help, reading about a condition that more severe than one's own, but sometimes it makes things oddly worse.  Wakefield got diagnosed with ALS, as an active 33 year old.  The book tells the story of her deterioration into near immobility over the ensuing year.  About a year after publication, she died.

Okay, so, yay, I don't have ALS, but it really brings home the helplessness of having a major diagnosis.  Wow, you think, it's possible to get really really screwed, with no warning, by your own body.

Anyway, I highly recommend the book.  It's really more the story of everything she did during that year of massive deterioration, some of which involved panicking and being depressed, but not nearly all of it.

Friday, July 15, 2011

The Talk (no, not that one)

Hanni: What's a gun?

Mama: Hmm. Where did you hear about guns?

Hanni: At preschool.

Mama: Was a kid talking about guns?

Hanni: No, a teacher.

Mama: What did she say?

Hanni: I don't know. [Pause.] She said guns are bad.

Mama: Well, there are different kinds of guns. A gun shoots things out
of it really fast. There are water guns that you can use to squirt
water, and those are fun. And then there are things called glue guns
and staple guns. Those are used for projects. But there's another
kind of gun that shoots bullets, and those can hurt people.

[Long pause.]

Hanni: What are they for? The bullet kind?

Exercise Equipment

I've given in and admitted that I need to exercise indoors, under climate controlled conditions.  Also crucial is that I not have to travel to get my exercise.

(Go to all the trouble to get to the gym?  I'm exhausted by the time I get there.  I can't believe how many people who hear about my health problems say "You should swim!"  Are you kidding me?  Travel to a pool, navigate through the locker room maze, change clothes, get to the pool, get cold, exercise, get out, strip off wet bathing suit, deal with wet hair, get dressed, package up wet stuff, travel back to home or work.  What's wrong with this list?  (Having said this, I know someone with lupus who swears by water aerobics, so it's all individual.))

So I ponied up the $$$ for a second piece of indoor exericise equiment.  My recumbent bike has been joined by a treadmill, which is such a massive space-hog it makes the bike look positively petite.

What made this decision so hard is that I have a deeply frugal soul.  Why pay for gym fees, or home equipment, when I can put on my running shoes and step out the door?  Lovely outdoor space is literally right outside my door.  I've spent much of my life with this have-fun-roughing-it-and-saving-money philosophy.  Hard to give that up.

But I eventually realized that the result was . . . not exercising.  I'll exercise today, oh wait it's too cold out and cold makes my bones ache.  I'll exercise today, oh wait the fog burned off and now it's hot and I get sun rash.

The indoor bike helped, but only gave me about half the exercise opportunity I need.  I need to rotate my exercises, otherwise I get joint problems.  Also, I get bored.

So hooray for my new treadmill, and my new commitment to spending beautiful sunny days indoors with the lights on and the electric exercise equipment running.  Whatever works.

Plagiarism Scandal

Or is it only a scandal if people know about it and are scandalized?

I caught a grad student plagiarizing in his research writeup.  This was not a borderline case.  It was massive, egregious, indisputable.  Plus, it turns out it's a second offense.  He was caught cheating in one of his classes just this Winter.  So he's on file with the Grad Division, with a warning that a second offense could result in dismissal.

The student's advisor, who is old, corrupt, and probably in the early stages of senile dementia, claims not to see any evidence of plagiarism.  Claims that it's impossible to talk about a technical topic without inadvertently reinventing other people's word choices.

This does not shock me.  What shocks me is the Department Chair, who I previously had a lot of respect for.  She is sensible, funny, sarcastic, and smart.  I thought she had a backbone.  But in this case, she decided not to forward the case to the Grad Division, for two reasons: 

1) The advisor didn't think it was serious, and she didn't want to go against his wishes (even though he is, by objective standards, wrong).

2) The consequences for the student could be substantial, possibly including dismissal.  Uh . . . yeah?  Isn't that what the Grad Division is supposed to adjudicate?  Why are we trying to shield him?

Part of the problem is the culture of my department.  A large portion of the faculty seem to see themselves as the students' social workers.  They infantilize the students, give them endless second chances, and naively believe that if we carry our weakest students long enough, they will suddenly mysteriously blossom into independence and excellence.  I don't know to what extent the Chair buys into this value system, but she is certainly sensitive to its presence and unwilling to go against the grain. 

I wrote back protesting, and laying out my reasons.  I eventually persuaded all involved (except the Advisor) that the case should be forwarded.  So I guess I won.  But I'm deeply discouraged about the situation.

I have simply stopped assigning papers in my undergraduate classes, because the university's Academic Dishonesty process is so dysfunctional, and because I routinely catch between 15% and 25% of my students plagiarizing.  My record in one class was 45%.

I have lupus.  I simply can't spend all my available energy documenting plagiarism and battling weak-willed provosts.  So I made the pedagogically terrible decision not to grade papers anymore.  But I can't get away from having to evaluate graduate student work.

Welcome!

I'm a professor.  I have lupus. And I have a preschooler.  Am I mad to take on blogging?   Whatever.  I need to talk, so to all two of you, thanks for listening.

I was diagnosed two years ago, but I've probably had it, sub-clinically, for most of my adult life.  Who knows, maybe my whole life.  Looking back, being tired has been the overriding theme of my existence.

In theory I'm an ambitious academic, but I'm driving a car that keeps running out of gas.  I push harder on the gas pedal, it works for a very short while, and then no matter how much harder I push, the car dies.  After gassing up, I wonder if I imagined it all.  Other people can go hundreds of miles on a single tank.  So maybe, this time, if I'm just less lazy, more organized, more self-actualized, more committed . . .

I'm the anti-FemaleScienceProfessor.  Go check her out, she's awesome.  But reading her makes me so tired I want to throw up.  I haven't been to a professional conference since I got pregnant.  I've never had a federal grant.  I publish in fits and starts, and the list of ideas that I don't follow through on is weighing me down.  

Okay, want to know how crazy I am?  I want to homeschool my kid.  WAITWAITWAIT, hear me out.  I know I can't do it alone.  But with a large homeschooling community around me, a local Independent Study Program that will take my kid at least a couple of days a week, babysitters to take her to activities for less cost than private school, and a self-motivated kid who likes to disappear into her own projects while I work on my computer . . .   Maybe, just maybe.

So that's a preview of some of the themes I want to talk about.  Hope to see you again.