Chapter 1: At the Beginning
At the beginning, there's a numb, nickel-sized buzz just below my left ankle. I pretend it isn't there.
"Don't cry, Annie-banannie," I soothe my little girl; "if you don't want a broken cookie, take a whole one." Tears rim her eyes, bright blue, with black starpoint lashes. I nestle her close and wipe them away.
No time for pain.
"It's OK she touched it, Sasha," I josh her big brother -- big, as in five. "We're family; we eat each others' germs all the time." I caress his warm cheek with my hand; cherish the green-brown kaleidoscopes still opening in his eyes, his lashes long as awnings, his size-four feet that barely touch down.
Something terrible is happening to me.
The ob-gyn said the numbness would disappear once Anna was born. But in two years it's spread across the bottom of my foot and up the other ankle.
Why is it spreading? What's wrong?
Forget it. Don't think about it.
Something is making my fingers tingle, and buzz, and go numb.
"Sasha, sweetheart, please stop squiggling so I can button your shirt. We'll get to the swings much sooner if you stay still."
Why can't I feel buttons anymore? Find buttonholes? Fish dimes from my wallet?
Maybe I'm always in a hurry . . . .
Something's jabbing my left foot -- like tiny medieval demons wielding hot pins and needles, and plunging them deep.
Could there be nails in my shoe?
A year ago, they were torturing my ankle.
Six months ago, they started gouging my calf.
"What's wrong, Mommy?"
Now they're attacking my thigh.
"Sasha, is there a pin stuck in the back of my jeans?"
"Nuh-uh, Mommy; nothing there."
What the hell is going on?
"Bedtime -- book time," I call.
One bright-white polka-dot of light pulses in my left eye . . .
"I pick first," Sasha yells.
"No, it's my turn," Anna yells back.
It flashes like a shorted-out bulb . . .
"Let's snuggle up and read both, you guys."
Like a pin-dot blind spot.
"Once upon a time . . . . "
Shut up! No time for melodrama -- just read.
"When wishing still counted . . . . "
Something makes my skin so sensitive that the swish of my summer skirt, the warm silken water of the lake at Stockbridge, even the stroke of Jim's hand, sears across my leg like acid.
"Um, Sweetheart? The other leg now?"
Dear Jim -- my smart, sexy, high-watt husband. He's so overwhelmed by his labor law practice; how can I add one more worry? Nope; not one whisper about these wacky symptoms.
What's filling my leg with strange static? Why does it scatter sharp sequins of pain with every step?
Am I just imagining this? Am I a hypochondriac, wanting attention like my mother? Not if I don't tell anyone. Well, imagining something beats having a real disease. Though that makes me crazy, right? Wrong. And nobody could invent this pain. I'm blessed with a florid fantasy life -- but, hey, I write kids' TV, not horror flicks.
Now the edges of my left leg shimmer and blur -- as if Scotty started beaming me up to Starship Enterprise, then forgot to finish the job.
Sasha twirls in a giddy circle: "Six, six, I'm almost six! Say about my birthday party again, Mama."
"Well, we'll go to the Central Park Carousel with all your friends . . . "
How will I ever walk all that way?
"And we'll play Pin The Tail on the Wolf . . ."
" . . . and I'll bake you a big green birthday cake -- "
"Green's my favorite!"
Don't think; just do it.
Something in my body is moving between the brutal and the bizarre.
"Push my swing, Mama," calls Anna.
"Mine, too," calls Sasha.
Something makes me gray with fatigue, till the joy of pushing my kids on the swings becomes a sheer act of will.
"Push me higher, Mommy, higher! I want to fly," Sasha sings out.
Hot spots light up and burn along my arms, neck, and ears -- as if some sadist were rubbing them hard with Szechwan peppers.
"Look at me, Mama -- my toes touch the sky," Anna sings back.
Stop it! Don't dwell on it.
"Look at me!"
Think about something else.
"Look at me!"
Think about how beautiful your children are.
I don't have time to be sick.Think about Jim's sweet dark eyes.
I don't want to be sick.
Something terrible is happening. And it's getting worse.
I won't let myself be sick.
I can't make it stop.
I won't let anything hurt us.
* * *
After two years of silently enduring these mysterious, increasingly severe symptoms, I both want -- and fear -- a diagnosis. I'm afraid of what this physical cacophony means, yet need a name for the strange and frightening sensations reverberating through my body. When I finally tell my internist, he packs me right off to a neurologist he describes as brilliant, no-nonsense, and thorough.
Right on all counts; except he forgets to mention that Linda Lewis is also an attractive Amazon of a woman -- over six feet, with prematurely white hair cut short and blunt; big gray eyes behind glasses that make them even bigger; thick black lashes and brows in a strong face with wide cheekbones and a generous mouth. Her large hands look capable of doing anything well, from setting broken bones to rappelling down a mountain. She listens carefully to my strange conglomeration of maladies, asks a few incisive questions, but mostly just listens as I describe what I feel.
When I finish, she makes a quick sketch in red ink on one of those human-body coloring-book-type outlines neurologists keep close at hand for recording afflictions. Her sketch uncannily mirrors my own mental picture of my pain -- which feels so tangible, so "visible," that I envision it as a network of chartreuse neon lines criss-crossing my body. Now, there it is on paper: my own chartreuse images -- transmogrified, but heard, understood, recorded.
"You probably thought you were crazy, but you're not," Dr. Lewis says. "These sensations may seem peculiar and unrelated to you, but they draw a very clear picture for me: they follow the nerve roots all over your body."
So it's real. I have objective confirmation. I take a deep breath for the first time in months. She understands me -- and my pain. I will be eternally grateful just for that.
But a split-second later, it slams into me: corroboration is very cold comfort. Something is really wrong.
While I struggle with this paradox, Dr. Lewis writes a flurry of blood test and laboratory slips, then hands them to me.
"These tests are used to diagnose nerve disease. Maybe they'll make the picture clearer," she says. "Come back when I have the results, and we'll see."
* * *
I quickly learn to loathe the EMG, or electromyograph, more than any other neurological test. First I ride the elevator to a suspiciously quiet floor at the Neurological Institute. I go alone on the premise that this is my body, and I should begin now not to inflict my clinical trials and tribulations on anyone else. I shed my clothes and identity, and don an especially limp and frumpy hospital "gown." Then I wait an unconscionable length of time in a frigid little cubicle until a white-coated Ph.D. appears with no greeting or apology for the long delay. With no explanation whatever, he orders me to lie down on a narrow examining table, grunts "Don't move," and -- with absolutely no preamble -- jabs long pins attached to electrodes and wires deep into the most painful parts of my most painful muscles until they make contact with my most painful nerves. In my efforts not to scream or kick, I force myself to think about something -- anything -- else. Dr. Josef Mengele comes immediately to mind.
"We will now begin the procedure," he announces to a spot somewhere near the overhead light fixture.
Begin? I thought it was almost over.
"Don't move," he repeats. I wouldn't dare.
With this, Dr. Sadist turns on the electric current that feeds the needles stuck in my legs, then blandly and cold-bloodedly records my pain as a wavy graph on what looks like a TV screen. It now feels as if my legs are hard-wired into several dozen electrical sockets. Or maybe the way it feels when I crack my elbow on the edge of my desk. I think it may feel like the neurological equivalent of the electric chair. Unfortunately, I do not die, though it crosses my mind as a rather attractive alternative.
I actively question myself as to whether I am merely being a wuss about all this until I learn that a certain well-known professional football player tore the electrified pins from his legs and ran cussing from the Procedure Room because he couldn't bear the pain. In many ways, however, this is irrelevant. He could still run; I'm too undone by pain and indignation to think of lifting my foot.
Finally, just before I start to smoke, Dr. Mengele turns off the machine. While I'm still limp and quivering, he yanks out the needles and announces, "Time for Evoked Potentials."
He calls a lowly technician into the room. She fries the surfaces of my arms and legs with special infra-red lamps. When I am broiled to the proper sizzle, he attaches new, circular electrodes to highly sensitive spots on the surfaces of one arm and one leg in order that he might administer a series of increasingly intense electric shocks to my nerves and record exactly how long it takes me to twitch. I try to remind myself that both these modern medical variations on the medieval rack are designed to yield objective measurements of how quickly my nerves receive and relay information to and from my muscles and spinal cord. But even before the results are in, I know these tests prove one thing unequivocally: I am a total coward when it comes to pain -- any pain, but particularly gratuitous pain. Of course, I could have told them that before enduring any tests at all.
* * *
Dr. Lewis remains undaunted when she calls to tell me the test results are equivocal -- they reveal no clear pattern of nerve damage. She now announces, in what I'm learning is her characteristically cavalier fashion, that it is time for a nerve-and-muscle biopsy. This turns out to be an utterly excruciating little surgical procedure in a real-live operating room. Using only local anesthesia, a lively, handsome young neurologist named Dr. David Younger will remove about a tablespoon of muscle and just a smidgen of sural nerve from the back of my left calf for examination under a microscope. Unfortunately, I must be fully conscious during the entire operation so he will "know" when he cuts the nerve.
Barely two weeks later, I'm in an operating room, lying prone on a narrow padded table that looks more like my Nana's ironing board than I would have imagined from Hollywood versions. In fact, nothing's quite what I expected: the small, white-tiled room looks a little like a kitchen; the nurse has a beard and tells me how much his little girl likes Reading Rainbow, the children's TV series I write; and Dr. Younger not only has a soul but a sense of humor.
It takes far more digging to find that skinny skein of nerve than either of us like, but we chat quietly about religion, Brahms, this-and-that while he pokes around in my left calf. The surgical nurse holds my hand whenever he's not busy, and we all make awful puns about having a lotta nerve, being nervous, etc.
But when Dr. Younger finally hits that nerve, there is absolutely no doubt: he knows. So does everyone else anywhere near that crowded, stuffy little room. When he severs the nerve, pure pain explodes in my leg, drills up my spine, and makes me puke.
Yet even in hell there are funny moments. As soon as I finish retching into a stainless steel kidney basin, I croak, "How come when you cut a nerve in my leg, I throw up?" Dr. Younger doesn't miss a beat: "Don't you know the leg bone's connected to the stomach bone?"
Then, taking my question seriously, he stops cutting and explains, "Local anesthesia blocks some transmission of pain to your brain. But your body always knows when it suffers an insult like this -- and it rebels."
His compassionate explanation makes me feel human again -- not like some wide-awake corpse getting dissected. He looks at me very kindly, and asks, "Are you really OK? I hate to hurt you. We could take a little break if you need it."
"No, I'm OK," I say.
Then, as if rehearsed, he and I and the nurse, who's still holding my hand, launch into a rather off-key rendition of "Dem bones, dem bones, dem dry bones" as he finishes removing muscle and starts sewing the first of 29 stitches. I know I will love this guy forever.
* * *
It takes almost two weeks to get the biopsy results. My first hint that something must be wrong occurs late on a Friday afternoon, when the internist tips me off with a phone call. This in itself is surprising on a brilliant October day at the start of a peak leaf-watching weekend. What's a doctor doing in his office at 5 PM on a Friday?
"You speak to Linda yet?" he asks much too casually.
"About the biopsy? No, not yet," I answer. Uh-oh, I think; something's wrong. I start churning out disaster scenarios: Cancer. Degenerative disease. Amputation. Death. Stop it!
"Well, she's been trying to reach you, so you'd better give her a buzz," he says.
"What does it show?" I ask. He suddenly becomes very busy.
"Gotta go," he says; "talk to Linda." And he hangs up.
The phone rings again. It's Gloria, "Linda's" secretary.
"Miss Schecter? Dr. Lewis would like to see you at her office next Monday at one. Dr. Younger will be there, too. Can you make that?"
"Uh, yes," I stutter, "b-but could we come right now? Or -- could I just talk to her about the biopsy results?"
"No-no, she's too busy; she can't come to the phone. But she definitely wants to see you Monday."
"We'll be there. But -- couldn't I just speak to her for a minute?"
"No, she's leaving right now for a weekend in the country."
And that was that.
* * *
Our weekend looks normal: wall-to-wall kids, terminal exhaustion and, for me, what's now "normal" pain plus breath-snatching post-op anguish. Jim and I always take turns getting up early with the kids on weekends -- instead of snuggling together in bed and getting interrupted every two minutes, one of us sacrifices so the other can catch up on lost sleep. Saturday it's my turn, so I'm up before dawn with the kids, who bounce around smelling fragrant as fresh-baked bread still warm from the oven. We cuddle inside a quilt on our window seat overlooking 72 and West End, watching the West Side wake up: first the garbage truck parade, then a rising tide of buses and cars, then yawning dogs walking their yawning owners.
Our high point is always the dog across the street. Each day at 6 am, the doorman at 253 West 72 ceremoniously opens the door for a scruffy blond dog who pads slowly to the corner Korean deli, fetches the Times, then returns home holding the paper proudly in his mouth.
Jim and I always try to walk the parental high road: no-sweet-cereal, no-violent-cartoons, only-one-hour-of TV-a-day. But when exhaustion clamps down hard -- like today -- I crash on the couch and settle for second best: replay #4,358 of The Land Before Time, Sesame Street, or another "worthwhile" video. Instead of sugared cereal, I serve pretzels, milk, and Granny Smith apple slices. After my nap and a real breakfast, we all get dressed. Then, hobbling on a cane and flattering Sasha into pushing Annie's stroller, I take the kids to the Museum of Natural History while Jim goes to the office to prep for a trial. I sink to the floor in the Dinosaur Hall and nearly weep when a guard hustles me back onto my numb and painful legs. Sunday, we three head for the playground in Riverside Park with a picnic while Jim goes back to work -- Jim's trials are always my tribulations.
Beneath the mundane -- between pb&j sandwiches, endless cups of apple juice, macaroni and cheese, spaghetti and turkey balls, and bubble baths with my hands shooting so many electric sparks I almost expect to electrocute one of us -- I have a sense of the beach sliding out beneath me in an ebbing tide.I feel like I'm walking on top of a thin m&m sugarshell reality that I will crash through on Monday at one o'clock.
What's waiting there, underneath?
* * *
Monday brings full-blast sunshine, an intense autumn-blue sky, and trees fairly shouting with color. But it's never a sunny day inside the Neurological Institute, no matter how vibrant the weather is right outside the sliding glass doors. The light is always a waxy, hideous yellow fluorescent that makes the healthy resemble the dead, and the unhealthy gray as mummies and even more horrifying. The floor, waxed too many times, is too slippery for canes and crutches, and there are never enough seats for the infirm to perch on while we wait in utter silence for the maddeningly slow elevators. I try not to see the people with Frankenstein stitches showing through the new stubble on their scalps; others with completely empty eyes slumped in wheelchairs; and the walking wounded who limp, shake, drool, and drag their feet. A few poor souls get walked along like flaccid, obedient dolls, or dogs on invisible leashes, by hollow-eyed relatives or unconcerned aides. Some simply stare at the ugly linoleum and cry. Two, three, five minutes in that lobby and I feel waxed to the floor -- helpless, hopeless, inert.
All this, just waiting for the elevator.
"Elevator going up," chants a mindless recorded voice. "Elevator going up, watch the closing doors." Thank you. Just in case I never thought of it before, the voice reminds me that nerves feed my eyes as well as my muscles.
The action picks up as soon as we reach the second-floor waiting room. This is it, the moment I've been seeking and dreading: my post-op, diagnostic consultation.
Drum roll, please.
But now something weird begins to happen. I quickly discover the great advantages of denial -- a psychological state which allows persistent negation of the undeniable facts right in front of your nose -- an evasion I'd always assumed was "bad" and "weak" and thus reserved for weenies. But I am about to discover that denial is actually good. Very good.
Jim and I sit in the over-crowded waiting room, alternating between stiff silence and irrelevant giggling over nothing. His hand holding mine is icy. Slippery. I try to concentrate on the new and attractive decor.
An agitated woman rushes into the room.
"Are you Ellen Schecter?" she practically yells. I nod, and she hands me an envelope with my name typed on it. Misspelled.
"Dr. Lewis said be sure to read this before she meets with you."
She exits quickly, as if relieved to get away from us. I never saw her before, and never see her again.
Jim and I move even closer together and read the letter, clutching cold, sweaty (in my case numb) hands.
Dear Ms. Schecter,
As you know, the biopsy is abnormal . . . . It indicates demyelination with axonal changes . . . . The teased muscle fibers are abnormal . . . . demyelination in sensory, motor, and autonomic nerves . . .
"What does this mean?" Jim asks.
"Not sure. But demyelination -- not good. That's the protective coating on the nerves -- "
We read it again. And shrug, mystified. We don't like that dreaded word "demyelination." It could mean ALS (Amyotrophic Lateral Sclerosis, AKA Lou Gehrig's disease) or Multiple Sclerosis, or who knows what horrible "osis" we know nothing about.
"Where the hell is Dr. Lewis?" Jim asks.
We're so nervous we get punchy. But before we have a chance to do more than whisper and giggle nervously like naughty high school kids about this hot tip we can't decipher, Dr. Lewis appears -- she looks especially stately today -- and asks us to come into her office. She doesn't look happy. Or sad. She tries to watch me walk without appearing to watch me.
Neurologists have a bad habit of doing this. They walk behind you to check out your gait: do you limp? drag? stumble? wobble? It must be a little trick they learn in medical school: Remember to use every available opportunity to observe the patient without being observed. Rather sneaky, though I actually prefer it to the alternative: The neurologist commands "Walk!" and I must perform a humiliating (in my case lopsided) promenade up and down an examining room or corridor under intense scrutiny while wearing a deliberately frumpy shmatah -- gaping open in the back -- that the medical community insists on euphemistically dubbing a "gown."
I try to walk behind Dr. Lewis so she can't watch me limp. Because, in fact, it's hard to walk and I must move slowly while using the cane. I still can't put my heel down on the floor, and the merest brush of my skirt against the two biopsy incisions on my left calf is excruciating. Pulling on panty hose is an exercise in determination versus agony that leaves me in a cold sweat. I know she knows my incisions hurt, but I also know she cannot imagine how much. I'm afraid to tell her. It will make it much too real.
She keeps trying to sidle behind me, and I keep trying to slip behind her. It's an awkward little minuet, and once again I give a half-giggle.
"Nice skirt," she observes. "New?"
I nod yes.
"Trying to hide the scars on your leg?"
This is her version of small talk.
Kind Dr. Younger still hasn't arrived by the time we file into Dr. Lewis's office. I sink gratefully into the maroon leather chair in front of her massive mahogany desk, which is roughly the size and heft of a coffin. I notice that the room has been redecorated since she sent me for surgery. Someone worked quite hard to re-create exactly the same perfectly dull and innocuous 1930's "Consulting Room" style it had before: same ugly no-color cretonne drapes, same old tomes with depressing titles -- Brain Tumors, Multiple Sclerosis, Diseases of the Nervous System -- same leather chairs with brass studs, same enormous desk piled with files, same little examining room off to one side with white enamel cabinets, basins, and sharp-pointed instruments displayed behind glass doors. This all-white chamber of horrors is already haunting my sweatiest nightmares.
I sit there inhaling the musty air, and imagine John Gunther sitting in this chair in this room with the same Thirties' smell, maybe even the same dust motes dancing in the sunlight, making mental notes for his book, Death Be Not Proud. I imagine his heart breaking as he tried to escape into the ugly pattern of meaningless arabesques on this same rug while a doctor informed him that his beloved young son will die from a brain tumor.
The place still reeks of stale sunshine and despair. I wonder how many other people before me sat in this same massive leather chair -- much grander, probably, than the ones they have at home -- waiting for the watershed news that slices lives forever into Before and After.
I imagine them, like me, trying to calm down and stop shaking, trying to conjure up all the rational questions I can't remember or haven't thought of yet. Like all those other poor suckers, I take deep, reassuring breaths as I convince myself that the news cannot be all that bad. Denial. I glance at Jim: his sweet dark eyes look even bigger than usual; frightened and a little too shiny. He still grips my hand, white-knuckled, as if he's afraid I'll float away from him.
Dr. Lewis wears a blouse that at first glance resembles silk but is really polyester. 'Less up-keep,' my desultory brain muses. This blouse is crimson, which looks especially handsome with her prematurely white hair and big gray eyes that look pretty even without make-up.
I'd love to see her wearing mascara just once, I think, drifting further into the Denial Zone. The make-up tangent, designed to keep me thinking about anything except what's happening to me right now, reminds me of a story I heard from another patient. She told me how Dr. Lewis suddenly appeared in the hospital one New Year's Eve just before midnight to check on a dangerously ill patient; how everybody stopped breathing for a moment when all six feet of her swept into the ward in a floor-length swathe of black velvet. I fall in love all over again with that image of her: the avenging Doctor-Angel guarding her patient from Father Time's scythe, robed in black velvet, glittering with the sharp scintillation of knowledge and know-how and diamonds . . . except, wouldn't she wear rhinestones? She's far too practical to spend all that money on diamonds . . . .
The image dissolves and I concentrate on the sun motes dancing haphazardly in front of the window. It probably hasn't been washed more than two or three times in the decades since John Gunther's son died.
Throughout my reverie, Dr. Lewis rustles papers into piles, sorts pens and pencils, puts large paper clips around the letters and lab reports bulging out of my rapidly expanding chart. I watch the clips immediately slide off again. She avoids looking at me. She chatters about something very neutral and irrelevant, so I go back to the sun mote ballet, humming the Sixth Brandenburg Concerto in my head, and waiting for the movie to begin.
Now she clears her throat, pushes her glasses back up her nose, shoots one quick look at my face, then tries fitting a large, evil-looking pincer clip around the unruly papers. It bites and holds. She clears her throat again, looks up, and says,
"Well, you've got a disease."
email us with your comments.