I don’t mind making jokes, but I don’t want to look like one.

                   —Marilyn Monroe 

vaudeville isn’t dead.  take my life, for example.  one great bad joke after another, so unfunny it’s funny.  it starts almost two years ago, like this: i wind up in the hospital again.  this time, something’s terribly wrong in my head.  all the wires are crossed,  i’ve gone almost completely numb all over, and deaf except for the constant loud ringing in my ears, my brain is pressing against my skull like a pumped-up blood pressure cuff turned inside out.  we’re sure, b. and i, that it’s a brain tumor about to burst.  in my head i wonder which is worse: death, chemo or brain surgery.  i know i’m not pretty enough to carry off a shaved head.  so when b.  accidentally sees the nurse’s chart and gets up the courage to whisper to me what she’s read, i can’t hear her, but i see the large tears rimming her eyes, her bottom lip bitten and quivering, i know what she’s said: untreatable.  i say what?   she shakes her head, doesn’t want to repeat it, scared i’ll faint or flip out.  she starts to cry.  i cry.  we both cry and grip each other.  then i make her say it again.  only this time i hear her say multiple sclerosis.  i’m relieved.  i’m actually happy.  oh, i say.  is that all? 

sterile sheets , the squeak of nurses’ shoes down the long corridor, green fluorescence of hospital walls.  i’m in for a week of steroids which swell me up and send my diabetes spinning out of control.  my brain roars and shudders like a bad engine, every inch of me a bruise, a fire, a wince.  my roommate is a disoriented homeless woman with epilepsy who smells like a zoo, pisses loudly with the bathroom door wide open and smears herself and the bathroom we share with her fresh shit.  do you know where you are? the interns shout at her in spaced-out staccato.  she names the wrong hospital.  what year is it? what is your name?   who is the president?  she can barely stay awake—they keep slapping her cheek and calling her name to keep her conscious.  she lives in a shelter: no belongings in her bedside table, no visitors, no vase of wilting flowers.  do you know what’s happening right now in iraq?  her cottonmouthy mumble, war, gets a little round of clapping from the interns.  that’s good, that’s very good.  do you know why we’re at war?

this horse is hurt.  don’t you usually kill a horse with a broken leg?  

no, we usually use a shotgun.

my first time in the tube for the m.r.i.  they ask me to lie on a table, strap down my arms and legs and waist, put a plastic cage over my face and slide the table into a tight white tunnel, the walls of which are less than an inch from my nose and cheeks.  deadpan, they tell me: don’t move.  b. holds my ankle, the only part of me she can reach from outside the tube.  i squeeze my eyes shut, try not to shake, compose repetitive rhymes in time to the unbearably loud clack and bang of the machine.  i name each sound: machine gun, firecrackers, jackhammer, train-track-clacks.  whenever the racket stops, a voice on an intercom tells me this one will take 6 minutes or try to stay absolutely still, just 10 minutes this time. i add up the minutes, trying to keep track of how long i’m in, how much longer until i’m out.  when i’ve added to 35, a very long silence.  i count slowly up to sixty; i do it fifteen times.  the tube’s the same overlit tight squeeze smooth plastic of an airplane washroom.  i just flew in from my cranial m.r.i. and boy, are my arms tired!  finally, they pull me out: the machine had broken down with me stuck inside it.  i parade through the waiting room in my open-backed gown and socks, march down the gauntlet of old ladies who stare at me as they drink their pastel-colored barium cocktails, crawl into the back-up machine, and start over.

two more m.r.i.s, a c.a.t. scan, uncountable blood tests, a couple e.k.g.s and a terrifying spinal tap, and my doctor can tell me what we’d figured out three months before:  it’s multiple sclerosis.  treatment?  weekly intramuscular shots of avonex.  my neurologist supervises as i give myself my first shot, and i imagine i must look pretty tough shoving the 2-inch needle in my thigh.  i’m sitting on the examining table in my paper gown when he tells me i’ve the distinction of being the best at this he’s ever seen.  but you’re diabetic, you already give yourself shots all the time, he says.  so i guess you have an advantage.

i have a friend, barely out of college, who recently had a stroke that left her physically intact but unable to speak.  though in her head she heard herself speaking normally, all her thoughts came out in one syllable—oh.  i cannot imagine what she must have wanted to say for the last month, the weight and inadequacy of that single syllable, repeated through a hundred different inflections.  it’s been a long, frustrating recovery  during which she’s been forced to set aside her medical school applications to complete first-grade worksheets (fill in the blank: hit the nail on the h_____).  but the ridiculousness of this situation seems to appeal to her.  her best friend visited her this week and tells me she’s started speech therapy.  they’ve given her a record of children’s music, because all our language is stored in song, and often before stroke patients can speak, they can sing. i hear you know a song, he said.  any improvement is an improvement.  he’s been missing her voice terribly.  so she sang for him the one song she’s chosen to learn:  No-bod-y knooooows the trouble I’ve seen…

i’m getting used to the absurdity of my post-insulin-reaction-and-brain-lesions body now; of all the things i've lost, it’s my mind i miss the most.  when a low blood sugar sends me dottering on some ludicrous tangent while teaching, i can’t bring myself pull out the little cardboard carton of juice with the picture of big bird and suck on the miniature straw.  instead i say this crowd’s dead, morty, play me off, but nobody does.  so i fill in the blank stares, i hit the nail on the heart.  when i find myself too weak to carry a small pumpkin from the picking patch to the car, i’m a bit too proud to mention it.  i haul the thing on my shoulder anyway, grind my teeth and hope my shaking doesn’t show.  quietly i worry about my klutzy limp, imagine the routine i know now by heart: prat fall, mud puddle, smash pumpkin, make scene.   when i forget, for the third day in a row, where i’ve parked my car, i wander between lots in the monsooning rain, umbrella turned inside out, for a full hour before i finally call my teaching assistant, who rescues me and drives me round the lots; when, smiling kindly, he deposits me, a full 8 seconds later, at the door of my car, parked at the end of a near-empty row, there’s no recovering dignity.  i bow my thanks, duck inside, turn the key:  we killed, i say to my waterlogged reflection in the rearview.  

there’s something very vaudevillian about being chronically ill.  vaudevillians, like the chronically ill, are a dying breed (oh!), tragic figures, it’s true, but tougher than average folks.  brave and stubborn enough to bomb repeatedly and on purpose.  funny only in their failure.  more human than the rest of us.  the logic of vaudeville is survivors’ logic: work will make you free; do you know why we’re at war?  the language of vaudeville—punchline, break a leg, knock 'em dead—is the language of survivors, marries suffering to pleasure.  they call it gallows humor, but i think perhaps it is the humor of the camps, of not surviving what you've survived.  pain is ridiculous, the same bad joke repeated night after night, a hundred different inflections on the punchline.  the deadpan face, the rim shot, it has to be invested with belief.  i’m trying to learn this, to commit to humility, to be strong enough to be weak.  how’s the old joke go?  i love performing, i just can’t stand all those people watching me.   oy gevalt, are my arms tired.  take my life… please.

One Art

The art of losing isn't hard to master;

so many things seem filled with the intent

to be lost that their loss is no disaster.

Lose something every day.  Accept the fluster

of lost door keys, the hour badly spent.

The art of losing isn't hard to master.

Then practice losing farther, losing faster:

places, and names, and where it was you meant

to travel.  None of these will bring disaster.

I lost my mother's watch.  And look! my last, or

next-to-last, of three loved houses went.

The art of losing isn't hard to master.

I lost two cities, lovely ones.  And, vaster,

some realms I owned, two rivers, a continent.

I miss them, but it wasn't a disaster.

---Even losing you (the joking voice, a gesture

I love) I shan't have lied.  It's evident

the art of losing's not too hard to master

though it may look like (Write it!) like disaster.

—Elizabeth Bishop

Aujourd’hui, je ne suis pas sure que ce que j’ai écrit soit vrai.  Je suis sure que c’est véridique.  (Today, I am not certain that what I have written is true.  I am certain that it is truthful.)

—Charlotte Delbo, Aucun de nous ne reviendra

charlotte delbo was imprisoned in auschwitz not because she was a jew, but because she was a french resistance fighter.  she and her husband were both arrested by a french policeman who was a nazi collaborator.  delbo was taken to the camps, and her husband was shot dead.  after the war, delbo tracked down that french policeman and had him tried for his crimes.  the court, while agreeing that this man was guilty, refused to convict and punish him, because he had later come to his senses, switched allegiances, and fought  valiantly against the nazis.  

charlotte delbo never recovered from that injustice.  for the french court, memory was linear, time-bound—the past had a beginning and an end.  for her, however, the past was always simultaneous with the present, every moment existing with and staining every other moment.  it’s why delbo titled her first memoir of auschwitz  Aucun de nous ne reviendra—None of Us Will Return—because memory cannot be lived past, cannot be survived, no one ever returns from the camps.

i believed for a long time i’d survived many unsurvivable things.  despite a nearly-unfailing memory for detail, conversation, music, images, i can’t recall a single moment from my life prior to age 9.  memories after that time are sparse, vague, doubtable.  i know the events of my life, i’ve got others who remember my past—but those things don’t bear repeating here.  i mention this only en route, as a way to get where i’m trying to go this afternoon.

what links me to delbo is certainly not the depth of suffering in our pasts—while mine was rough, it would be insulting to compare.  what binds me to delbo, i believe, is that neither of us survived our pasts.  though i couldn’t narrate any series of events, i felt dark things, long-fanged invisible monsters, scratching always at the underside of my skin, a little itch and burn.  an urge to make a wound and let it heal.  what allows the survival of a memory is that it remains only in the intellect—a rational, discrete, logical knowledge of a series of facts: auschwitz existed; i was there; they did this, and this.  one can put this in the past tense.  but strong memory, especially the memory of trauma, enters the body and lives there, takes up residence in the marrow and flavors all sensations.  this is why proust’s taste of madeleine and tea could send him back so strongly to childhood; why the smell of decaying garbage brought auschwitz crashing down on delbo; why the feeling of a hand near my throat drives me to panic.  because one can never escape the body: prison and home, temple and flesh, the body remembers, remembers deeply and with the passion of immediate experience. 

i used to have an incredible memory in other ways.  i could recall long sections of books i’d read, could sing back any song—lyrics and tune intact—after hearing it only once, was never late, never missed an appointment, never ever failed a promise.  i was impossible to argue with, because i remembered and could repeat every word my interlocutor said, the tone in which it was said, the gestures accompanying it, the interruptions, the subtext.  i think it’s because i feel—in my bones, my muscles, nerves, the base of my stomach and the small of my back—i feel everything.  words vibrate, they hit me with actual force.  a whisper like little kisses, breath on my skin.  the look that flashes  across a friend’s face brings for hours the hot scrape of sunburn.  my body records everything.

now, i’m beginning to fail.  i’d been warned by others with m.s. that this would happen—short-term memory loss seems to be one of the most common problems among us.  my neurologist denies it’s a danger for me at this point;  a good friend who’s a bit older assures me wryly it’s just a normal part of getting older; but the day last week when i left the lights on in my car three times in three hours, once with the keys locked inside, dangling and winking from the ignition, i broke down and cried in the bathroom of a bargain store, allowed myself 5 minutes to lose it completely before heading back out into the heat to wait for the tow-truck guy to jimmy the window and jump start the engine.  lately, i lose my car in every parking lot; wherever i go i leave something behind.  even when my lover reminds me, i forget to give myself my weekly shot of avonex, forget to feed the cats, forget to put the wet clothes in the dryer; i forget i’ve given myself insulin and then forget to eat, the crashing insulin reaction my body’s stiff reminder. 

when i spend an hour hunting first for my housekeys, then my glasses, shoes, papers, then the housekeys again, my lover gently suggests, voice full of tender concern, that perhaps i should begin writing everything down. 

where to start?  how shall i decide what must be written down, what must be remembered and what can be forgotten?  it’s all minutia until it’s gone.  today a close friend tells me he’s a bit worried about my memory loss.  i laugh, phone cradled precariously against my neck, and tell him it could be worse—the m.s. could lose me my legs.  silently i think: or hands.  eyes.  speech.  bladder.  bowels.  taste.  sex. 

it’s not the forgetting that’s so painful.  there are practical ways to deal with forgetfulness.  it’s the clear evidence of my mind’s slow slip, something i didn’t even feel.  it’s the pained look in my lover’s eyes, pity mixed with irritation and love, that makes me feel so small, a little child banging her fists on her thighs to black and blue: i am not sick!  i am not sorry!  it’s the worried tone in my friend’s voice, which i attempt to scrub away with inappropriately abrasive laughter. 

m.s. is a disease that’s all about control.  you and your doctors try to control with tests and monitors and needles what turns out to be fog, shadow, slippery silver little fish that dart and flash like stars, nibbling  white empty spots in the soft grey of your brain: places you’ve died.  m.s. takes, with each little spot, something; you don’t know what it will be.  

i don’t remember anymore what it’s like to take my body for granted.  sometimes i watch my students, in their early 20s, golden and long-limbed and reckless, and i wonder what that feels like to know you are well, you are whole, you will live forever, you will always be who you are and have always been. 

i know there’s a connection here, something about delbo’s memory, the body, trauma, loss.  i no longer understand what it is.  disease takes me farther and farther from any kind of knowing.  nowadays, i know myself least of all.  all too often i feel like a stranger.  perhaps it’s just strange new country.   i’ll survive, but i won’t return.

 In all language and linguistic creations there remains in addition to what can be conveyed something that cannot be communicated; depending on the context in which it appears, it is something that symbolizes or something that is symbolized… And that which seeks to represent, to produce itself in the evolving of languages, is that very nucleus of pure language. 

                          —Walter Benjamin, “The Task of the Translator”

in english, we have no language for pain.  we speak only in metaphors, in indirect words that are never quite enough.  our metaphors for pain are always about violence to the body (to paraphrase elaine scarry), as if to conjure up the image of the harm will accurately account for the pain that results:  i feel a searing pain in my arm.  i have a pounding headache.  the news of her death was gut-wrenching.  i’m trying to find a more accurate language, one that accounts for the pain of disease without casting disease as a violent opposition, an enemy army.  because being constantly at war is exhausting.  and disease has become my home, my mother, my faithless lover. 

some days i forget i'm sick.  when the morning’s brilliantly sunny and cool and i wake up early and not tired,  when my body feels good because i don’t feel it at all, i can live a sweet and temporary fiction.  i could be anybody, and i could strike out a rudderless little ship with nothing at all in my pockets, hip soundtrack swinging in my head, or slide shipless into the day, no fear of drowning.

most days, this is impossible. though they say it’s unhealthy, i can’t help thinking of myself as a sick person.  even the days when my body cooperates, when the m.s. seems to be hibernating, there’s the diabetes.  which means knowing the exact level of sugar in my blood, controlling my chemistry with juice and insulin, paying keen attention to each stutter, shake or hunger pang that may mean danger approaching.  it means always carrying a blood test kit, identification, packs of juice, emergency money.  it means never having empty hands.  i’m connected to a machine—an insulin pump—every minute of my life.  it looks like a beeper, except that it’s attached to me by a tube i insert under the skin of my stomach.  i can take it off temporarily, for a shower or for a little rest, but for an hour at most, which i stretch willfully like a child at bedtime.  when i eat, i must press buttons to tell the pump to deliver more insulin to my body.  i must remember to change my battery, change my insulin, change the needle, check for air bubbles in the tube.  the skin of my stomach is pocked red with welts, the scars of previous tubes.  they take months to heal and disappear; I’m always making new ones.  i keep the pump hidden in my bra or in the waistband of my pants.  when i'm hot, it presses sweat to my skin; when i toss in my sleep, the tube tangles around my waist, umbilical, and i dream i’m caught by something dangerous in the cold water dark. 

it's a constant reminder of what i’m moored to.  it's a constant reminder of what’s missing in me, the dead spaces my body makes with its cellular suicides.

the pain i’ve got no language for isn’t the body pain of needles or bones.  for that, there’s metaphor: burn grind sting wince.  blood and bruise.  the pain i've got no language for is slow and warm and sweet as lakewater, familiar and constant as my own breath.  pain is the pure unspeakable language; my body’s untranslatable, dumb. 

what kind of numbness is it?  my doctor's well-meaning, but it's been more than a year since my right hand's come undone.  the stunned nerves always vibrate, as if i've banged my funny bone, or fallen asleep on my arm.  it's a speechless hand, it feels thick, full of pins, clumsy and foreign.  buttons bedevil me, my handwriting's a messy child's scrawl.  by some cosmic joke, it can still feel burn, cut, sting, but not a silk skirt, not the stroke of skin.  what do you call that kind of numb?