Once again, I went to the big Medieval Congress at Kalamazoo in May, at which I went to the dance, but did not dance. This year, though, I also went to the alternative, European Medieval Congress in Leeds, where I tried to go to the dance, but an hour and a half after its nominal start time, the music hadn't yet started. Needless to say, I did not dance.
Too bad, I guess, because I heard later that there were Daleks at the dance, which might have been worth seeing. But I had to get up early the next morning to set out on my trip home, and (as it turned out) it was probably a good thing that I got a good night's sleep. Because here's a brief run-down of my trip home from Leeds.
City bus from dorm to train station in time to get a coffee and a pain au chocolat before my 9:15 train.
Arrive at Kings Cross at 11:30.
London Underground to Paddington Station, where I purchased a ticket for the Heathrow Express.
Heathrow Express 12: 10 train.
Heathrow check-in and security cleared by a few minutes after 1:00.
At this point, I was delighted: I've spent literally hours before getting through Heathrow check-in and security, so I thought my time from King's Cross to the Heathrow lounge was really great.
Get on plane for 3:00 departure.
Plane takes off, and then about the time they were going to come around with drinks, the pilot announced that we needed to return to Heathrow: there was some sort of pneumatic leak.
When we landed, fire trucks came out and sprayed water on the brakes to cool them down. At first they were trying to get the engineers to fix it so we could take off again, but that turned out to be impossible. We sat on the plane until about 7:00 waiting while the airline staff arranged a hotel for us, and while they scrounged five buses to take all 250 passengers back to the terminal.
Bus back to the airport, where we had to go through immigration again and pick up our luggage.
Air Canada did put us up in an airport hotel (another bus ride) and provided us with dinner and breakfast vouchers. I shared a dinner table with two other guys, one who was also going to Columbus and a college student from Toronto, who figured it was his chance to load up on free food. He and I, I admit, each took three desserts, including little lemon parfaits in tiny shot-glass sized glasses--but the table spoons that were the only spoons available literally wouldn't fit into the glasses, and we couldn't eat them. 5:30 AM wake-up call, courtesy of the airline: I certainly didn't request it.
7:00 AM bus trip back to Heathrow; 9:30 departure time. Same flight, actually, according to how airlines count these things, just delayed 18 hours and in a different physical plane. But same seat, same neighbors, same flight crew.
Arrive in Toronto about noon, where I waited over an hour for my bag, which I needed to collect and take through customs before I could move on to the next flight. Missed the flight, of course, because of the misplaced bag.
Flight to Washington National Airport, arrive about 6:00 PM.
Flight from Washington to Columbus, arrive about 8:30PM. Unfortunately, during my phone call to Rosemary from Toronto I had mistakenly said "about 9:30," so that's when she picked me up.
Forty-one hours plus, I make that, from 9:15 AM GMT in Leeds to get on the train, to 9:30 PM Eastern time to leave the airport in Columbus.
Oh yeah: one of those days was Friday the 13th. Three buses, two trains, one subway train, four airplanes, four airports, three train stations, three countries.
Years ago, when I was still a grad student at Ohio State, I baked some cookies for my Introduction to Folklore class. It was the last day of the quarter, and we were watching a movie. Plus, the class started at 7:30 a.m., and those folks deserved a reward for having dragged themselves to campus at the crack of dawn for the previous ten weeks.
When I got out the cookies, one of the students said, "I knew you'd bring cookies. You've just got a cookie personality."
I wasn't really sure how to respond, because the comment was delivered in a positive way, so I decided not to ask too many questions about what it means to have a "cookie personality." And I wasn't sure I wanted to hear the answer anyway.
This line turned into a running joke, and several years later, after I told that story to a class at the University of Northern Colorado, a bunch of them got on RateYourProfessor.com and left comments about my "cookie personality."
A colleague at UNC was always kind of snarky about the "cookie personality" thing, referring to it sarcastically on a number of occasions. It clearly irritated her, and she remarked more than once that she envied the label, even as she coached me to "grow a set," in her words.
More recently, I've run into a similar situation here: a former student told me that when my name came up in a conversation she was having with another professor, the other prof said, "Oh, Rosemary. She ought to have little birds fluttering around her head."
I can't tell you how much that irritated me. Being a "good girl" is a double-edged sword. Yeah, I'll be the first to say that there are a lot of benefits to it. My longtime friend Christina and I are sometimes astonished at the stuff we got away with in high school because we were considered to be "good girls" and "good students." (Don't worry, Mom: it was nothing dire!)
But when you get tagged that way, and--admittedly--when it's important to you personally to be thought of that way, it's a very restrictive and even a dangerous label.
Recent events at work have left me feeling like being anything but a good girl. I've been, by turns, enraged, depressed, astonished by people's short-sightedness, and just plain cranky. I haven't wanted to be nice, or be a team player. To do so would be to deny my very real, very powerful feelings. And yet, I worry that if I show my true feelings, speak my mind, people will think that the "good girl" thing has all been an act--that I was just waiting to get tenure so that I could revert to my true, bitchy self.
I posted this image to my Facebook profile,
and a former colleague commented,
"Rosemary! This doesn't sound like you at all."
But it's what I'd like to say sometimes.
Those of you who know me are probably saying "Not bloody likely." I know. If only I could say what I feel, be bitchy, pitch a fit, sound my barbaric yawp over the roofs of Morgantown. Instead, the arguments, the sassy comebacks, the bitchy asides just play on a continuous loop in my head. I'm not a nice person; I just hide my inner mean girl a little too well.
In the wake of all of this, I've been contemplating what "Good Girl 2.0" might look like, since "Good Girl 1.0" is so obviously an obsolete and buggy piece of software.
Good Girl 2.0 would maintain its signature features: trying to be kind, compassionate, reliable, helpful, and thoughtful.
However, while these are integral parts of the Good Girl programming, they need to not be automatic functions in Good Girl 2.0. Perhaps the new interface should have a series of pop-up dialog boxes: "Are you sure you want to say yes to that request?" "Does what you're about to say reflect what you actually feel?" "Can you tolerate disappointing or angering this person? Because it's OK if you do."
That last one's tough, since Good Girl 1.0 has a tendency to crash if she thinks someone is mad at her. And she's also worried that her niceness is an effective whitewash to hide her incompetence, so that without it she'll be revealed for the fraud she is. Or perhaps the better analogy would be to liken niceness to a bunker: "If I'm nice [or cooperative, or silent, or invisible], people won't hurt me."
How do you beta-test a new attitude?
Well, one way is graphically. Here's how I'm reframing the "fluttering birds" comment:
Any good student of fairy tales knows that in many older variants, the heroine isn't always sweet and docile. Often, she's wily and intelligent--a trickster. She often plays into the villain's idea that she's naive and powerless specifically to put herself in a more powerful position. Folklore reminds us that there's always been a subversive element to good-girl behavior; in Good Girl 2.0, I think that feature needs to be more robust.
But here's the thing: it's not about the program's interface. It's about being more user-friendly--the user being me. In short, I don't necessarily have to change how I respond to things, but where I respond to them from. If the response comes from that automatic, Good Girl 1.0 place, then it's likely based in fear, or shame. The 2.0 response might might look the same to another person, but feels entirely different to me because it comes more directly from my feeling in the moment.
Cinderella may still be smiling, but she's not doing it because she feels like she has to.
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For me, personally, that would be today, the final day of jazz programming on Pittsburgh public radio station WDUQ.
Earlier this year, Dusquene University sold the station to Essential Public Media out of Boulder, Colorado.
Presumably (or so listeners were told during several pledge drives), this was because the university could no longer foot the bill. Members, myself included, pledged diligently to keep the station going, and specifically to keep jazz on the air.
WDUQ's official slogan (as per the mug) was "News, Jazz, NPR." So, between "Morning Edition" and "All Things Considered," it was wall-to-wall jazz, with local hosts and guests and frequently, local performers (and national ones making a stop in the city). The station aired over 100 hours of jazz a week.
When Essential Public Media took over, they vowed to honor the station's legacy...and I suppose they have, in their own cynical, paltry way. Jazz will still be on WDUQ. For six hours a week, on Saturday nights.
The other 94+ hours that used to be devoted to jazz? Wall-to-wall news and talk radio.
"NPR ate my local public radio station" is the name of a Facebook group formed by and for "members of public radio stations that have been taken over by the NPR borg."
I'm now one of 'em.
Don't get me wrong: I love NPR and have always been a pledge-paying member of whatever station I listen to most often, wherever I've lived.
But I love local culture more.
Essential Public Media's rationale for the change is that Pittsburgh is the only city of its size in the U. S. without an all-news public radio station.* So by EPM's bizarre logic, that means they're required to junk their new acquisition's successful format so that we can have one. EPM insists on defining what the public wants by what they think we lack, rather than by what we've already got, and what loyal listener-members want to keep.
Pittsburgh is of the very few public radio stations in the country with a jazz format (my old member station, KUVO in Denver, is another). DUQ members shelled out to keep jazz on the air, largely because jazz is such an integral part of the city's history, and Pittsburgh has been a mecca for the genre pretty much since its inception. Just look at this list of jazz musicians who've come from, or been based in Pittsburgh compiled by the Carnegie Libraries. Even if you know nothing about jazz, you'll undoubtedly recognize a few names on there.
The format isn't a lack. It's a celebration of what's important locally, which the folks a thousand miles away in Boulder don't seem to be able or willing to comprehend. Pittsburgh has three NPR stations, and WDUQ has always had the largest membership. So what, exactly, is "missing"?
To say I'm upset is putting it mildly. But more than I'm angry, I'm heartbroken.
I listened earlier this week as Tony Mowod, who's hosted "Jazz on the Nightside" in the evenings for 23 years, talked with one of the many local jazz musicians he's had on his show this week. Tony talked about growing up feeling like a weirdo for being into Stan Kenton when other kids didn't even know who that was. His guest joked, "Try telling your friends you were listening to a Sonny Stitt record last night!" And they talked about how much harder it will be for young musicians to learn about the genre when there's so little of it on the airwaves.
The guest played several tracks from his own CDs, including the last number at the end of the show: "Goodbye," which was Benny Goodman's traditional closing number. If ever there were a tearjerker of a torch song, that's it. I first came to know it through Linda Ronstadt's version, on the big-band album she recorded with the Nelson Riddle orchestra, What's New.
Sure, it's sentimental, mawkish, and over the top.
But it wrenched my heart again to hear it at the end of one of Tony's last broadcasts, and to hear him get choked up when the guest said afterward that he played it "to say goodbye to you, Tony, even though I don't want to."
Such a loss.
Thanks ever so much for listening to the "public" in public radio, Essential Public Media. You've taken away the part of WDUQ that truly was "essential" to me. My NPR pledge will go elsewhere from now on.
*Correction: one of two, according to former DUQ host Katherine Fink, whose post better explains the business end of this change.
The project's goal is to help LGBT teens know that however bad things are at the moment, that isn't going to be a permanent state...they can and should live to see a time in their lives when they can be themselves, and be accepted for who they are.
The point that James touches on, and that I hope isn't lost in the movement, is that it's not always kids doing the bullying.
One of my best friends all through school growing up came out after we started college. That wasn't much of a surprise to anybody, but of course that doesn't make it any easier for someone to come out. And for years he had been bullied, harassed, and tormented about being gay...but importantly, not ever, to my knowledge, by his peers.
In many ways I think he'd escaped that kind of treatment by other kids because he was just so damned charming and funny. I mean, he was truly the funniest person I have ever known. He was witty, punny, and could stage some of the best practical jokes imaginable with the straightest of faces. He was also incredibly smart, musically gifted, and genuinely gregarious. I really credit him for making my own time in high school as easy as it was--somehow, he single-handedly made it cool to be a nerd.
So who was doing the bullying? Teachers.
I remember sitting in chemistry class my junior year when suddenly the door flew open and Coach Click came in, rolling Jay in front of him in a ball cage from the gym. He'd apparently stuffed Jay in the empty cage, locked it, put it on the service elevator to the third floor, and proceeded to wheel Jay around from room to room. (I should mention that Jay was a pretty small guy--probably only about 5' 3" in shoes, and very slight. Hence, his ability to fit into a 3 x 3 ball cage.) Jay characteristically laughed it off, I'm sure because he knew that not to would open the floodgates for others to pounce.
The year before that, Jay and I were in the same gym class. The teacher, whom I've written about here before, was a nasty, sexist piece of work. During the winter, he often closed the partition wall between the two halves of the gym and put the girls on one side and the boys on the other to play half-court basketball. Needless to say, he generally stayed on the boys' side and ignored the girls altogether (which was fine with most of us, who weren't that enthused about basketball to begin with).
On one of those days, several minutes after pulling the dividing wall into place, the little door in the partition opened, and Mr. Speciale thrust Jay through, telling him to "Go play with the girls."
Even writing about that now, I find myself breathing faster, my muscles tensing up for a fight.
We need to remember that it's not always kids who are the bullies. Adults--teachers--can be bullies, too. And when they're doing the bullying, kids are even more powerless. After all, aren't your teachers, your coaches, supposed to be the ones looking out for you? When those alleged allies become the enemy, is it any wonder that kids despair?
Jay didn't kill himself. At least, not directly. But he did die of complications of AIDS three years after we graduated. He died the summer before he was supposed to start his senior year at Cornell, a couple months after he'd returned from a semester abroad in Florence, where he was studying art history.
It's hard for me, even now--some twenty-four years after his death--not to blame it, on some level, on adult bullies like the "coach" and the "teacher."
Realistically, I know that Jay struggled with his sexual identity throughout high school, and couldn't be open about it for a whole lot of reasons that went far beyond the fear of proving those two right, or of inviting more harassment. And I've resigned myself to the sad fact that it was just pure dumb-ass luck that Jay was becoming sexually active right at the moment when HIV was spreading like wildfire and there was no known treatment for it.
But still, part of me has always, always wondered: if we'd lived in a world where it was OK for LGBT teens to be honest with themselves and others, would he have died? Did he get infected because he had to seek out the answers to his questions surreptitiously, with strangers?
The hell of it is that Jay knew it got better. It was better. He loved his life, and had loved it all along. But that life was still cut tragically short because of the stigma attached to his sexual identity.
The last picture of us together, taken about six months before Jay died.
I still miss him like crazy. And I'd still like to kick Coach Click and Mr. Speciale in the teeth for what they did to him, and moreover for the message they sent to their colleagues and to students that it's all right for adults to behave in those ways. Cool, funny even.
When the pre-service teachers in my classes start complaining about how kids don't respect teachers these days, and how much better it used to be in the "good old days" when teachers' authority was unquestioned, I remind them that a lot of teachers abused that authority in heinous ways, and were very seldom called on their abuse. It astonishes me now to think about it, but at the time neither Jay nor any of us thought to report those incidents to another teacher, or to the principal, or to our parents. That shit just happened.
So, that's my addendum to the anti-bullying campaign: Bear in mind that bullies come in many forms, and some of them are full-grown monsters. They're the ones who most deserve to be called on the carpet. Don't be afraid to tell someone if it's an adult who's bullying you. And if the first person you tell doesn't do anything to help, go to someone else and keep talking until someone does help. Someone eventually will. And it does get better.
Jay as I will always remember him best: laughing his @$$ off.
I recently posted here about the eye inflammation I've been experiencing in conjunction with my Behcet's Syndrome. As I mentioned, I'd been seeing a very kind, if wacky Groucho-Marx lookalike opthamologist for treatment. Well, on a followup visit in late August, he discovered the inflammation was back, and admitted to being stymied. He suggested I go see another opthamologist at the Eye Institute, a guy who's allegedly an expert in autoimmune and inflammatory eye problems.
As soon as Doctor #2 (an apt name, as you'll see) walked in the room, I recognized him as the first opthamologist I'd seen there three years ago, when my rheumatologist wanted me to get a baseline checkup. In the words of my great-grandfather, the man's an idiot--one of those pompous doctors who talks past you, to his resident, the entire time he's in the room with you.
As he'd done the first time I saw him, he immediately started spouting about how much experience he'd had with Behcet's, and how I wasn't the typical patient. He asked if I'd ever had a genetic test for HLA-B51, a genetic abnormality that some people with Behcet's have that indicates a predisposition to the disease. I had, and it was negative.
Dr. #2 sneered. "How about HLA-B27? Did they test for that?"
I wasn't sure, I replied.
"I don't think you have Behcet's at all. I think you've been misdiagnosed, and what you really have is Reiter's Syndrome. I'm going to have you get tested for HLA-B27, because that would indicate Reiter's instead."*
(Bear in mind that he's really addressing all of this to his resident, who's clearly supposed to be impressed by Dr. #2's brilliance.)
So, he has the resident fill out the order for the bloodwork, and tells him to add a couple of other tests that he tells the resident (not me) are "standard."
Here's where I made mistake #1: I should have asked exactly what those tests were. I did ask if he would call me with the results, and he said he would if they turned out to be positive; otherwise, I wouldn't hear from him.
Had the bloodwork done. Ten days or so went by and I hadn't heard anything, so I figured everything turned out fine.
Then last Tuesday I got home from work and saw that there was a voice-mail message. When I retrieved it, the first message was from someone (not Dr. #2--maybe his resident) at the Eye Institute telling me to call him immediately, and giving me his pager number, but giving me no indication about what the issue was. That call came in at 8:30 a.m.
The second message, which had come in around 4:30 p.m., was from my primary-care physician, who left an even more mysterious and alarming message, saying, "I'm sure you're concerned about this and have lots of questions, so please feel free to call me at home this evening."
Now I'm worried. I called her home number and got the machine, so I left a message saying I don't know what she's referring to because nobody's told me why they're trying to contact me, and that I'm freaking out a little.
Around 8:30, she called me back, and as I sat there on the couch next to Tom, she lobbed a bomb right into the center of my life: apparently, one of the tests Dr. #2 had ordered came back showing that I'd tested positive for syphilis.
"They want you to be admitted to the hospital right away, and you'll probably have to be there for two weeks, because the treatment is an IV antibiotic drip that needs to be administered every four hours. I also think you should know that the county health department is probably going to come around to ask you a lot of very personal questions."
My head is reeling. Is this some kind of sick joke? I was looking to the left in case a car came around the corner, and meanwhile a semi-truck blasted in from the right and flattened me.
"What? What? Are you kidding?" I don't think I've ever been less articulate in my life. "Two weeks? How?"
She says she can call and have them get a bed ready for me right now, and talks me through the lumbar puncture procedure that she says they'll probably do first. It's like she's talking to me from the other end of a long, echo-y tunnel. The impression I get is that if I don't voluntarily go to the hospital, the county health officials will come and drag me there.
Here's where I did one of the only sensible things I did: I told her that I needed some time to make arrangements, and would check into the hospital the following morning.
Then I have to get off the phone and turn to my husband of thirteen years and tell him I've tested positive for syphilis. And that by the way, I'll be in the hospital for the next two weeks. And of course, he'll have to be treated, too.
Let me just say that Tom was, as always, a rock, and thank god, because other relationships might have been (and have been) destroyed by this news.
But I didn't get any sleep that night.
Sensible things #2 and #3: I called my sister, who talked me off the ledge, told me about a friend of hers who'd had a false-positive syphilis test, looked up stuff online and found out that false positives are pretty common for folks with autoimmune disease, and even got me to laugh by telling me what a great excuse it would be for any crazy behavior: "Sorry I got all syphilitic on you!"
I also e-mailed my former rheumatologist in Denver and asked her if I'd ever had the test under her care, figuring that if there was an older, negative result on record, that might help out.
The next morning, the hospital called me bright and early, saying they had a bed ready for me, so come on down. In the meantime, I'd put in a call to my rheumatologist here, and when I explained to the nurse who answered that I'd been told I had to be admitted to the hospital that morning, I was relieved when she said she'd pass the message on right away.
Within about ten minutes, the phone rang, and it was my rheumatologist. She's a no-nonsense kind of person, and talking to her felt strangely like I imagine it feels to talk to your lawyer when you've been arrested. Finally, someone who wasn't panicking (and making me panic). She was 99.9% sure it was a false positive, and didn't understand why the additional testing needed to be done in the hospital. I'd still need to check in, but she said, "Just pack as if you were going to a hotel for a couple of days. Bring your own pillow. I'll see you over there."
The relief was tremendous. Not complete, for sure, but why hadn't she been the one to give me the news in the first place? What was all the overreacting about? Hadn't any of these people talked to each other?
Around 10 a.m. I checked in to the hospital and went up to the 8th floor, where they put me in a private room and told me to have a seat. And there I sat, for 45 minutes, before anyone came by.
Finally, the nurse came in. At that very moment, my cell phone rang.
It was my rheumatologist: "OK, I talked to the head of infectious disease, and he's sure this is a false positive. So you don't have to check into the hotel."
"Well, I'm already in the hotel room."
"Hmm. Well, let me talk to him again and see what he wants to do. But for the moment, let's just assume that we're going to do the confirmatory tests on an outpatient basis. I'll call you back."
I hung up and explained this to the nurse, just as her pager went off and she got a message to the same effect. So she left the room to go make a call from the nursing station to find out what's going on.
A couple minutes later, Tweedle Dee and Tweedle Dum--aka the floor resident and his med-student flunkie--walk in. "Ms. Hathaway, we're here to take some information from you and to get your vitals and everything. So, what's going on?"
"Well, technically, I'm not actually a patient," I say, explaining that it looks like I'm going to be discharged. And frankly, I just don't want to tell this story again to these guys.
But the resident persists. "Well, until we know for sure, let me just take some information from you."
Mistake #2: I should have just told him to f#@k off. I mean, he was perfectly nice and all, but really--he didn't need to know, at least not right then. But I went ahead and explained the whole story, which was actually beginning to seem a little funny, and when I got to the point where I said, "And so they think I have syphilis," he turned to the med student and in a pseudo-sympathetic stage whisper, says, "I think you'd better shut the door."
Fast forward through about half a dozen more cell phone calls, pager alerts, and mixed messages, and they finally give me a lab order and send me off to have blood taken for the second round of tests. And I'm out of the hospital two hours after I was admitted, twelve hours after being told I'd be there for two weeks.
WTF?
I mean really: W. T. F.?
The two additional tests they ran both came back negative, as my rheumatologist expected they would. I got an e-mail back from my former rhuematologist in Denver expressing shock that anyone's first reaction was to admit me to the hospital before consulting with an infectious-disease specialist and running further tests. The most basic Google search instantly turns up information explaining the prevalence of false-positive syphilis tests not only in people with autoimmune disorders, but with lots of other conditions, as well.
Why on earth had everyone jumped to the worst possible conclusions, and immediately proposed the most dramatic and extreme treatment? I mean, the one upside of managed care is that it usually insists on starting with the cheapest, most basic intervention possible before hauling out the big guns. Here we went straight from border skirmish to nuclear winter.
The Health Sciences Campus here at WVU has come under a lot of fire for its lack of coordination and communication, and its incessant territory wars. I guess it all seemed like the usual petty academic squabbling until I got caught in the middle of it.
And I know that this situation isn't unique to WVU, either: this was my first experience with the scary machine that is health care these days. Once you get caught in its gears, you feel pretty much powerless to extract yourself. I remember my bitter sense of betrayal after my dad's brain surgery last fall, when we didn't learn until afterward that he wouldn't be allowed to go home once he'd recovered, but would have to be admitted to a rehab center. And once there, being told that if he couldn't meet certain benchmarks, he'd have to go into a nursing home.
It's amazing how quickly one's body becomes public property in these situations...and my situation was certainly far, far less dire. But it still felt like I'd been sentenced to prison without a trial.
I've learned the hard way that even when you're panicking and the voice of Medical Authority is booming orders at you, you still need to advocate for yourself. I should've done it the day I saw Dr. #2. But at least I had another doctor who was willing to go to bat for me when it mattered most.
Still, I lay it all at the feet of Dr. #2. Why didn't he call me to deliver the news himself? And in the eight hours between his resident's message and the one from my primary-care physician, why didn't anyone think to include my rheumatologist in the conversation? Or do some basic research to find out what the real liklihood of the test results being accurate was?
I'm glad that it now seems mostly like a funny story, if a maddening one. For sure, I'll never go back to Dr. #2's office again, and if I ever see him around town, look out: I might go all syphilitic on him.
*Turns out that Reiter's Syndrome isn't even considered accurate terminology for that disorder anymore. More evidence of Dr. #2's so-called "expertise."
