Category Archives: illness

can you hear me major tom?

So I’ve been of late calling myself “Billy Pilgrim,” when people ask me how I am; digging tenaciously through those mad years we call “the Vietnam era,” which I subtitle as “When Everything Blew Up and Everything Grew.” What, she’s not done yet? Not yet, not when I spent thompsonnearly three weeks with the likes of Hugh Thompson (left) Ron Ridenhour (right) ron5 and the ubiquitous Tod Ensign,  as well a the guy below (hidden three rows behind Jane Fonda) who hasn’t yet talked to me about what I still think of as his proudest hour. (Also buds like Steve Morse, Bill Perry, and Susan Schnall, who’ve given me so much of their time…)  The whole thing makes me weirder than usual. I’m boring to be around: scattered, listening constantly to Hanoi Hannah on Pandora.com to get in the mood, etc. etc.

kerryfonda1

But this week, I realized that Vonnegut is far too noble an antecedent to call on here: better that  TV show “Life on Mars,” (thus the David Bowie above). So now, when people ask me “How’s the book??” I won’t say I’m Billy Pilgrim. This week, at least, I’m Sam Tyler – a 21st-century creature who keeps thinking they’ve moved on, only to be dragged right back to 1973, one more time.

studying with truman

Sometimes things happen in the right order. If I had been a conscientious student at Hunter High School, I’d have read this book under Jack McNeil, my very first Creative Writing instructor. At the very least, you might think I’d have taken it 20 years later, as a narrative-obsessed journalist. But the true-crime genre it spawned had persuaded me I didn’t need to; who needed to read about a grisly murder? I care about trauma, but didn’t I already admire, and praise in my teaching,  My Dark Places, James Ellroy’s account of the murder of his mother and his search for their killer? And I certainly never saw the 1976 film made from the book.

Even seeing the two recent “Capote movies” back to back didn’t drive me to the book. The more famous of the two, Capote, was most interesting for its portrayal of Capote’s erotic attachment to accused killer Perry Smith (played above by Robert Blake in the 1967 flick). And seeing Infamous (trailer below) I was taken by Capote’s close partnership with Harper Lee, who did a lot of the reporting Capote ultimately claimed was his own.

It wasn’t till I came across the book here in Philadelphia that I decided it was time to read it — that would be a good lesson in the writing of narrative nonfiction. Now, I’m kind of stunned.

Six years it took for Capote to combine it all — to dream the dream properly till it was, as my old sensei John Gardner  demands of fiction, both vivid and continuous. And I’m thankful that I went in with *exactly* the amount of information I had.  I was simultaneously swept up in the dream and, on every page, nodding admiringly at how the story of that Kansas morning was woven from soft conversations with farm folk and stubborn cops.

I sit here persuaded of two things:

  1. That the story it tells is both profound and rather slight, as I’d long suspected.
  2. That I have to find the scholars who’ve looked at Capote’s summary of the psychiatric testimony, and see those psychiatrists ooked at Smith’s military experiences in detail.
  3. That as long as I live as a writer, I can study all I like, but it’s unlikely that I’ll ever write any prose that comes ten percent within Capote’s.

None of which stops me from writing: and it’s dourly appropriate to read this as I construct snapshots from the tales told by veterans.  I’ll just hope that some of the fairy dust clings to my fingers, so that the ten percent range is still achievable.

There sat down, once, a cold war on america’s heart

I didn’t know the video above existed, of my not-so-secret sensei JB.*, so excuse me while I catch my breath. I’ll wait, too. while you catch yours; here’s the heartrending poem he’s declaiming in that Irish-Woody-Allen accent. But that’s not the John Berryman poem I’m thinking about today.

I’ve never been a fan of Dream Song 23, below For the most part, Berryman at his best stayed away from explicit political references. But I’m staring at the Song now for clues, as I try in what I’m writing to evoke for 30 seconds an era I never lived through — wishing I’d never lost that great book The Dark Ages,  assigned by my beyond-brilliant Binghamton prof Sarah Elbert.

I also know that  I’m relying far too much on the Bayard Rustin phrase that David McReynolds taught me: Bayard spoke, he said,  about the era’s rigidity as “a large piece of sheet steel, 50 feet wide and 50 feet tall, and one inch thick – and if you  hit that with a  hammer at one corner, the entire sheet would reverberate.” (The Dark Ages referenced chronicles how under that steel, subversive elements like jazz and the Beats were gathering, though it makes almost no reference to any of my soldiers.)

jarrell_randallGrasping at cultural straws of all kind, I thought I’d try again. After all, Berryman was friends with WWII veteran Randall Jarrell (right) and in 1946 was teaching at Princeton, which like Yale had a front-row seat on the rest of my WWII story.

I know Berryman was spun by Hiroshima, and get the easy Joe Stalin bit, but what else is inside?   Please comment on what you see?  (You don’t have to be a Cold War baby to speculate.) I do think that the first verse, with its intimation of old-style TV static, comes closest to Rustin’s sheet of steel.

This is the lay of Ike.
Here’s to the glory of the Grewt White—awk—
who has been running—er—er—things in recent—ech—
in the United—If your screen is black,
ladies & gentlemen, we—I like—
at the Point he was already terrific—sick

to a second term, having done no wrong—
no right—no — right—having let the Army—bang—
defend itself from Joe, let venom’ Strauss
bile Oppenheimer out of use—use Robb,
who’ll later fend for Goldfine—Breaking no laws,
he lay in the White House—sob!!—

who never understood his own strategy—whee—
so Monty’s memoirs—nor any strategy,
wanting the ball bulled thro’ all parts of the line
at once—proving, by his refusal to take Berlin,
he misread even Clauswitz—wide empty grin
that never lost a vote (O Adlai mine).

Michael Erard of the Texas Observer had some thoughts about it last year – apparently Ike was about as articulate as Shrub, and he compares all the line-breaking to Ike’s speech.   I think Erard doesn’t recognize the purity of JB’s self-created syntax, though his comparison to the great “Mr. Bones” sections is probably apt. Still, what is the poem saying about that sheet of steel and who it silenced? Or should I be looking to the far-greater Dream Song 10 (Ike is 15) for my answer? However things hurt, men hurt worse.

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the WAC of my dreams

It’s a voice I hardly remember not having heard: the writer in the edgy science-fiction anthologies, the voice cool as ice, the material borderline radical. How many times did I read “The Girl Who was Plugged In” (turned later into an episode of Paradox), whose plaintive cyborg “Delphi” predated Blade Runner by decades?  Or the moment in “The Women Men Don’t See when the steely narrator tries to reassure a woman that she matters:

“Come on, why doomed? Didn’t they get that equal rights bill?”

Long hesitation. When she speaks again her voice is different.

“Women have no rights, Don, except what men allow us. Men are more aggressive and powerful, and they run the world. When the next real crisis upsets them, our so-called rights will vanish like—like that smoke. We’ll be back where we always were: property. And whatever has gone wrong will be blamed on our freedom, like the fall of Rome was. You’ll see.”

Now all this is delivered in a gray tone of total conviction. The last time I heard that tone, the speaker was explaining why he had to keep his file drawers full of dead pigeons.

“Oh, come on. You and your friends are the backbone of the system; if you quit, the country would come to a screeching halt before lunch.”

No answering smile.

“That’s fantasy.” Her voice is still quiet. “Women don’t work that way. We’re a—a toothless world.” She looks around as if she wanted to stop talking. “What women do is survive. We live by ones and twos in the chinks of your world-machine.”

“Sounds like a guerrilla operation.”

Frankly, I was never the HUGEST fan of James Tiptree, Jr, despite the Hugos and Nebulas and the knowledge that it was a pseudonym for a woman writer. I was kept at a distance by that detached voice, the same one that long convinced famous male writers like Robert Silverberg that the mysterious writer couldn’t be female, “for there is to me something ineluctably masculine about Tiptree’s writing.”  I’d never thought to buy the 2005 biography by Julie Phillips – I confess i didn’t even go to the extent of reading about it.

If I had, I’d have known that I’ve been looking for her for a long time.

allidaveyNot that she hasn’t already been in front of my face. In the 1945 manifesto from the American Veterans Committee mentions a “Captain Alice B. Davey, WAC, Armed Forces Advisory Committee” on its list of leaders. But it wasn’t till that hissy fit last week that I started trying to track down if she were someone worth writing about. The answer of course, was more than yes: Major Alice Bradley Davey Sheldon, who her mom called “Alli,”  was more of a kindred spirit than I imagined.

I’d been looking for, as I said to friends, “a WAC vet with complex thoughts.” In Alli I also found a writer, a dreamer, a bisexual who described boot camp in her diary:

the long grey-green lines of women, for the first time in America, in the rain, under the flag, the sound of the band, far-off, close, then away again; the immortal fanny of our guide, leading on the right, moved and moving to the music—the flag again—first time I ever felt free enough to be proud of it; the band, our band, playing reveille that morning, with me on KP since 0430 hours, coming to the mess-hall porch to see it pass in the cold streets, under that flaming middle-western dawn; KP itself, and the conviction that one is going to die; the wild ducks flying over that day going to PT after a fifteen-mile drill, and me so moved I saluted them.

Of my characters from this war, she belongs more with John Huston, who withdrew to Mexico in 1980, than with Howard Zinn or William Kunstler or Philip Berrigan. Most of her stories only whispered their social critiques. But she lays it out pretty clearly in “The Women Men Don’t See,” a few exchanges after the one above:

“Men and women aren’t different species, Ruth. Women do everything men do.”

“Do they?” Our eyes meet, but she seems to be seeing ghosts between us in the rain. She mutters something that could be “My Lai” and looks away. “All the endless wars …” Her voice is a whisper. “All the huge authoritarian organizations for doing unreal things. Men live to struggle against each other; we’re just part of the battlefield. It’ll never change unless you change the whole world.”

Alli, you were half right. Thanks for your muscular telling of the paradoxes you saw.

(Many thanks to Julie Phillips, for working so closely to bring her to the world. If I can convey 1/10 of what you have, I’ll consider myself lucky.)

Dancing with chronic illness, or when a mouse is your role model

Another cross-post, but of  work dear to me: a personal essay I first wrote a couple years back, when asked for something in the category “strange bedfellows.” You get to decide who the bedfellows are. (And if you click on the second page, you find out who the mouse is – with video!)

A blast from the recent past: Queens Boulevard had its usual martial look after a snowstorm. City snowplows had made quick corridors, long since finished off by relentless traffic, while sculpting on each side massive walls of hard-packed snow, some shaped like the cars they’d buried. On each corner, pedestrians stomped the snowdrifts into slush, occasionally even breaking the ice underneath. Great, I thought as I descended the subway stairs. Two great problems that taste great together.

Wrapped in a down coat that made me look at 41 like an overgrown toddler, I also carried a hefty backpack, the kind that turns into a rolling cart on clear ground. All of which made crossing the street a comic challenge even for a normal person, if you could really call normal a community college instructor who carried reams of paper on her back like some demented Sherpa.

The first corner took me about seven minutes, using my sight to find the first place to step and then trying to manage each slide across the bulk, hurling my pack across at the last moment. On the second corner restless students passed me, as if I  were a tree that had come half-unmoored. At the third, and mercifully last before I  got to the school doors, the drifts were smaller, but icy patches made it treacherous, passage still slow. For a normal person, navigating that snow would be tricky. But for me, whose feet felt wrapped in cotton wool on good days and almost numb on bad ones, it was asking a deaf person to sing a subtle tone poem, with broken bones the penalty for getting it wrong.

Suddenly, to my right, a petite woman of about 70, hair and lips a defiant orange, reached for my pack and offered a shoulder. I  nodded gratefully and let her lead me across the ice, letting go at the other end so quickly she  barely allowed time for me to thank her.

I waited till I  got to school to start laughing, not at the unexpected good Samaritan but at myself. This is what MS means, I  thought. You’re so slow, ladies 20 years older than beat you down the block.

I  suddenly wished some of the people who told me, “I wish I had your energy” had seen that. Being outwardly Type A had its uses – especially in the department, which thought little of piling on more classes for me to teach (an advantage for an adjunct). I  didn’t necessarily want to remind them of the limits to that energy, and they might not get why I  was laughing. Hire the handicapped, they’re fun to watch.
If twenty years of this hadn’t given me a sense of humor about it, I  thought, that fact would be a tragedy worth a telethon. Or something.
*   *    *  *

I’ve stopped teaching since then, at least for now, but mornings like today — when the mercury is teasing with near-frost –make me think of that week in Queens. Unlike most people with multiple sclerosis, my symptoms don’t get worse in the heat: it’s lower temperatures that turn my body numb, make my fatigue worse than ever, make my handwriting even more like shorthand than before. It happens indoors, too, sometimes with air conditioning: I still don’t know what Manhattan’s Community Board Five thought when they first saw this reporter drag herself along the wall of their meeting room because she couldn’t feel her legs (“Is that girl drunk?”)  When you’re diagnosed at 22 with a chronic illness, you feel life just handed you a big, sour lemon. But the key to getting through it for 20 years has been, at least for me, making lemonade (or maybe lemon martinis?) out of that lemon.

A bit of history, first: the lemon’s, and then a bit of mine.

Jean-Martin_Charcot
Multiple sclerosis means, literally, many scars — a name coined in 1868 by Dr. Jean-Martin Charcot, the father of neurology, after the death of a woman who had come to him with tremors and slurred speech. In her brain,  and those of patients like her, he found lesions smaller than a fingernail, threaded and knotted through the gray matter. He tried strychnine, electrical stimulation, injections of liquid gold, but nothing even helped.
Even for most of the twentieth century, all researchers were able to accomplish was to learn more about how the disease operates: the body’s immune system jumps up and attacks for no apparent reason the myelin sheath, the mix of proteins that line the nerves. The disease flared without apparent warning, and often receded, though each flareup often left patients worse off than before. And throughout most of the century, treatments were few and far between.  Physicians were thus, understandably, cautious in their approach. Right up until the 1980’s, many MS patients were discouraged from exercise, or regular employment.

Heuga1973
When Olympic gold-medal skier Jimmie Heuga came down with the illness in 1970, his doctors advised him to stop training and rest. But when staying sedentary didn’t help him improve, Heuga took their advice and flipped it 180 degrees, going back into training – if not at Olympic level – and starting a center for people with MS to devise structured exercise programs. In 1987, his center also began to fund research to challenge the conventional wisdom and promote a rehabilitative model for MS, one that employed exercise and physical therapy as equal partners with medication. Meanwhile,  one December night back then, I was hurtling to Manhattan frommt home in upstate New York in the middle of the night, hoping to learn what was wrong with me. As the car raced down Highway 17, the darkness was pierced in places by bursts of holiday lights, some towns decking their halls early and sending bits of red and blue across the relentless green of New York highway signs.

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