The eyes have it

About six or seven years ago, I was diagnosed with an autoimmune syndrome called Behcet's disease.  I'll spare you the gory details, but it was pretty debilitating the first few times it flared up, and prompted a couple of comments I hope never to hear again at the doctor's office:  "Holy cow, I've never seen anything like that!" followed by "Do we have a camera around here?"  (Thankfully, they did not.)

In the intervening years, I've been incredibly lucky:  lucky, first of all, to have a great doctor in Greeley, Michelle Stoltz, who diagnosed it as Behcet's almost right away, since I've since read horror stories about people who went years before being properly diagnosed.  Lucky, too, when my first rheumatologist left the medical profession altogether and shipped me off to another rheumatologist in Denver.

The doctor I saw there, Kathryn Hobbs, immediately nixed my original rheumatologist's treatment option: basically, a steady diet of prednisone that had caused me to gain a good fifteen pounds and barely kept a lid on the symptoms (and often didn't work at all).  I could have wept for joy, I hated the prednisone so much.

I was also very lucky that Dr. Hobbs was willing to battle my health insurance company to get me on Humira, an anti-TNF drug formulated for people with rheumatoid arthritis...but she said it showed a lot of promise for people with Behcet's, and eventually she convinced the insurer to pony up.  And almost immediately, the symptoms were gone.  Totally under control.  Lucky, indeed.

I was also lucky that when I moved and switched insurance plans, the new insurer agreed to cover the Humira without much of a fight.  The complete lack of symptoms for years on end almost had me thinking that maybe the disease had gone away--maybe it had never been real?

And then, about six weeks ago, my right eye started to feel weird--sore, and achy, and red...and I started having trouble seeing. 

Several students I knew had pink eye during spring semester, so I figured that might be the problem.  But since Behcet's can involve eye inflammation (which--luckily--I'd never had), I figured I'd better get it checked out.   And sure enough, I had uveitis, inflammation of the uvea that's a very typical symptom of Behcet's.

Fortunately, it responded well to the prednisone eye drops prescribed by my oddball opthomologist, who's a dead ringer for Groucho Marx, both in looks and demeanor.  Did the drops for several weeks, tapered off of them, eye felt fine.

Went in last Friday for a follow-up appointment, only to have Groucho tell me that the inflammation is back, and in both eyes this time.  Back to the prednisone eyedrops.

Autoimmune diseases are very strange; I think if I'd ever had the slightest interest in/talent for medicine, it would be a fascinating specialty.  You sort of have to befriend your disease--get to know its rhythms and its perverse sense of humor, its fondness for irony and the long con. My frenemy Behcet's doesn't like to be locked out.  Bar a door, and it finds a cracked window.  Seal the window, and it slides through a crack in the siding.  Deterred on one front, it mounts a campaign from the opposite direction.

I'm not writing this to seek pity or even sympathy; as I've said, I've been incredibly lucky at every turn of this journey.

There's a quote from writer Janet Burroway that I have stuck on a mirror in my bedroom:

Why, I say, should I ever have bitterly blamed [my body] for such trifles as I have blamed it for:  for having too much flesh in this spot, too little muscle in that, for producing this wrinkle, that sag, that gray hair, or this texture?  Dear body!  My dear body!  It has gone about its incessant business with very little thanks.

For me, it's a useful reminder that for every small, visible thing that our bodies do wrong, they're doing countless invisible things right, and continually.  I marvel at both the stability and the capriciousness of the human body.

But the capriciousness--that's the issue.  Of course, autoimmune disease mirrors life in that way:  our sense of control is purely imaginary, a ruse to suppress the unsettling reality that at any moment something could happen to blow everything sky-high.

And occasionally (very occasionally, the older you get, I'm discovering), the body surprises us by doing something extraordinarily good that we didn't know it was capable of doing, too:  in my pathetic case, running a couple of miles on the treadmill.

I'm trying to avoid using the rhetoric of betrayal around the Behcet's, and I hope to avoid using it around aging in general.  But our bodies do fail us in one profound way:  like the portrait of Dorian Gray, they evince all the decrepitude while the selves they contain go on feeling like they're twenty-eight.  At least, that's the age I feel like I still am in my head.  How about you?

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N. B.:  My friend Jane has written far more eloquently about the strange dichotomies of the self and the body here and here.

Dad's geraniums

Not only did they survive my benign neglect all winter--they were consigned to the third-floor bathroom, the only place in the house that gets full sun--they actually bloomed all winter, despite the nasty weather.

And now, they're bustin' out all over outside the screen porch, providing some extra screening from the sidewalk, and nonstop color.  And the cats love to peer out of the gaps between the window boxes to spy on passing dogs.

Thanks for the beauty, Dad.

Simple gifts

While we're on the topic of fairy tales...

Yesterday I received three "magical" gifts (in the sense that they were unexpected, delightful, and just in the nick of time).

First, a casual question on FaceBook about inexpensive retreats got a response from a high-school friend who owns a condo in Seven Springs, an hour or two northeast of Morgantown, who offered it to me for a few days in August at a bargain price.

Next, I went up to the office and discovered a big Fed Ex box with my name on it in the mailroom.  When I opened it up, I discovered abut a dozen recent children's and young-adult books sent to me by Random House for participating in their Teacher Advisory Board.

Among them is one I've been planning to buy after reading good things about it in the YA-lit blogosphere, The Dark Days of Hamburger Halpin.  I'm looking forward to starting on that one as soon as I finish Sisters Red, a contemporary YA retelling of Red Riding Hood, which I'm loathing.  But that's another blog.

In the evening, I went blackberry picking with a couple of friends at a berry farm off the Grafton Road, where the berries were the size of your thumb.

That was a gift in itself, but afterwards we went to Jo Ann's house in the hills of Preston County for dinner, which led to a tour of her amazing vegetable garden.  On the spot she pulled up a bunch of red onions, picked some squash and some cucumbers, and handed them over to me.

It's that early point in the harvest when I actually crave fresh squash, but the ones in the grocery look anemic and the farmer's market is several days away.*  So tonight, we're having grilled vegetables from Jo Ann's bounty.

A side gift (which I'll go ahead and mention, even if it messes up the "magical threes" idea) was a random comment from the clerk at a gas station we stopped at en route to the berry patch.  As I was checking out, he said, "You have a wonderful smile.  I can tell you're a positive person...there's not enough of that these days."

He was utterly sincere (and, I'm quite sure, not hitting on me), and it really touched me, especially since I've been feeling anything but positive this week, as my end-of-summer anxiety has started ramping up, and I've been feeling cow-like and frazzled in the heat and humidity.  I'm glad I can still send off that optimistic vibe, even if I'm not feeling it myself.

But it was that moment that caused me to reframe the entire day--to look past the awkward, difficult afternoon of writing and the bad hair day I was having and to see that in fact, it had been a very, very lucky day indeed.

*Note to gardeners:  do not start leaving anonymous piles of your zucchini bounty on my doorstep.  And no, saying they're from the zucchini fairy does not make it OK.

A new look, and an interactive feature!

You're right: the dramatic title of this post doesn't match the tedious reality.  But as you may have noticed, this half of the Romantoes writing team has been AWOL for awhile, so I needed something to motivate me to get back into the swing of things.

Plus, I was tired of the dark look of the old template, and the annoying sans-serif font.  We'll see how long it takes for me to tire of the "sunshine, lollipops" look of the new template.  It's good for summer, though.

I've also added a couple of new blogs to the blogroll on the right:  my friend Beth recently started a blog, Daily Devil, where she's going to try to post a photograph every day for the next year--a project that Spines over at alt.tedium recently completed (congratulations!).  And I just learned last week that my friend and former student Catherine has been blogging about all things frugal since 1996!  Apparently, she's kept her blogging secret from some of us until just now.  So naturally, I'm going to out her even further by mentioning her blog here, and encouraging you to check it out.  Her blog has advertisers, folks.  Advertisers!

My life over the last few weeks has been consumed by giving four different presentations at three separate teacher institutes in town.  It's the part of my job that's the most exciting, and the most nerve-wracking--working with teachers and trying to encourage them to think about English/Language Arts in new ways.  But because it's the part of my job that I'm most excited and most nervous about, naturally, I overprepared for all four presentations.

The upside is that I learned a lot, too--about Jack tales, Appalachian folk artists, and John Ashbery (the last I could've done without, but--oh well).  The downside is I've gotten very little writing done, either here or on my academic work.  So, consider this also an attempt to push through my writer's block and get the pen back to the paper, virtually speaking.

So, by now you're probably wondering about the interactive feature.  Well, it's this:  last week I bought, on impulse, a miniature Cake Wreck at Kroger's.

It's a doll cake made out of a single cupcake, bathed in icing.  What I found irresistible, besides the seventy-nine cent price tag, was the sultry, sideways glance on the doll's face.  It reminded me of the original Barbie doll, which was much sexier than today's All-American version.

The fact that it had been encased inside an upside-down deli container added to my horrified delight.  How could I resist "Princess Under Glass"?

I think there's a story here, but I'm not feeling clever or inspired enough to come up with one.

So, that's the interactive portion of this post, and the challenge I'd like to put to you, dear readers.  We know you to be a witty and sardonic bunch, so tell me:  what's the story here?  How did this unfortunate creature get trapped inside her plastic dome?  Did she deserve the horrible fate she met when I brought her home?

A postscript...somehow, the doll also reminds me of this book, which I never has as a kid but a neighbor did.  I thought it was just about the creepiest, most perverse thing I'd ever read at the time, but have subsequently met other women my age who read it as girls and loved it.  If you remember it, too, I'd like to know what your thoughts about it were and are.

Flat Pizza from Rubino's

When you call up Rubino's Pizza (in Bexley, Ohio) to order, a guy standing at the counter karate chops one end of the handset on a 1970s vintage beige-colored phone just hard enough to make it pop up into his hand. He's done it tens of thousands of times, probably. You'll tell him your order, and he'll tell you "Fifteen minutes" (sometimes twenty, if they're busy), and then he'll slam the phone back down.

The sign is vintage, non-ironic neon; the store has been there since 1954, and while I've only been eating there for a decade or so, Rubino's not the kind of place that changes much. A big part of its appeal is in its stability. It helps that the pizza is good, though.


Anyway, you walk or drive over there (there's no delivery), and you'll find a very unpretentious building, with a minimal parking lot--you might not even be able to park if they're busy.

Some people eat in, but I've never really seen why: there's really no visual appeal inside. So you just end up standing around waiting for your pies to come out of the oven, which they eventually do. They come out of the oven on a peel, of course, and they get put on a round piece of cardboard and then straight into a white paper sack. No boxes.

The guy on the sacks will fold the opening over three or four times, popping the last fold against the countertop with a downward stomp of his fist. You grab the pizza bags (they have a kind of peak at the top) and take them out to your car and drive home.

We always get one pepperoni, and the other is variable. It's a Columbus tradition for us, and the number is on Rosemary's cell-phone. More than once we've rolled into town and called Rubino's for dinner even before we arrived at the house. It's classic Columbus-style pizza: thin crispy crust, toppings right up to the edge, and cut into squares (rectangular strips, really). The sauce is just a little bit spicy.

I've known some who take their Rubino's pizza with anchovy fillets added on at the house, but that's never been my style; I take it the way it comes.

It's always worth the trip, not just for the taste (see Yelp or Urban Spoon for testimonials), but for the experience, too: the paper bags, the phone chopping, the bag pounding. These are Rubino's rituals, and they're important, I think.