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Fierce Joy

Ellen Schecter

Chapter 2
The Movie in My Mind:
Diagnosis and the Dissociation Factor



Jim and I sit dazed in front of Dr. Lewis's coffin-shaped desk holding hands -- his sweaty, mine numb. Her office, newly renovated in Middle Consulting Room style, reeks with the dusty odor of despair.

"Well, you've got a disease," she announces, fiddling with a file clip that faintly resembles a prehistoric raptor.

Her words seem to unfurl above me, emblazoned on a white satin ribbon. Well, this is an Annunciation. Of sorts.

Except it feels more like a B movie than a medieval painting. And as I watch it, I feel myself slowly shatter into parts: there's a Rational Ellen, a Scared Ellen, a third Wise-Ass and sharp-tongued, and another -- the Observer -- looking down from somewhere up near the ceiling. All of these are somehow separate from the real me sitting in the big, fancy, maroon leather wing chair trying to look normal and keep my act together as the movie begins . . . .

Chapter 2:


INTERIOR, DAY: Office of Dr. Linda Lewis at the Neurological Institute in New York City. October 11, 1988, 1:27 PM.

CHARACTERS: DR. LINDA LEWIS, neurologist; Dr. DAVID YOUNGER, neurologist and biopsy surgeon; JIM ALTMAN, my dearly beloved husband; and the RATIONAL, SCARED, WISE-ASS, and OBSERVING ELLENS.

"Well, you've got a disease," Dr. Lewis says."What disease?" I ask.

"I'm not sure what to call it yet," Dr. Lewis says. "A rheumatologist would probably call it systemic lupus. I feel safer calling it a lupus-like auto-immune syndrome. But it doesn't really matter. We see it in your nerve and muscle biopsies."

She starts fiddling with paper clips and pens, as if my query doesn't fully occupy her attention. "It's some form of peripheral neuropathy, which means it affects the nerves after they leave your spinal cord."

"You're sure it's not multiple sclerosis? Or Lou Gehrig's disease?"

"Yes. We're sure," Dr. Lewis answers.

"Say it out loud. Please."

"You don't have MS or ALS."

Jim relaxes a bit, wiping his sweaty palms on his suit pants.

"Well, that's a relief," I say, relaxing for a nano-second. Then I'm bolt upright again.

"Will it affect my brain?"


"How do you know? I mean, how can you be sure?"

"Myelin in the brain and spine -- the central nervous system -- is chemically different

from peripheral myelin. They're each attacked by different antibodies."
"Tell us again what myelin has to do with it?" I ask.

"Myelin insulates nerves the way the outside rubber coating insulates an electric cord. It assures a smooth flow of the electrical impulses that make muscles work."

Dr. Lewis pulls out pen and paper and makes a rough sketch of a healthy nerve with the intact myelin coating it. Then she draws a damaged nerve. It looks like a cockeyed tree with its bark gnawed off by a plague of locusts. She pushes the sketches across her desk.

"Demyelination -- injury to this protective coating on the nerves -- " she draws big red arrows pointing to the gnawed bark -- "gradually inhibits the flow of electricity and neurological stimulation, and this affects muscle tissue."

Jim leans forward and picks up the sketch, as if examining it closely will enable him to see into the future. I turn away and try to smooth the ragged cuticle on my thumb.

Hate that sketch; too scary. Is that what's actually going on inside my body?

"So the nerves stop working properly?" Jim asks.

"Right," says Dr. Lewis, capping her pen.

"All the nerves?" I ask.

"We can't predict sheer numbers. In your case, all three kinds of peripheral nerves are affected: Sensory nerves that carry sensations from the body to the brain. Motor nerves that carry impulses from the brain to the muscles and control movement. And autonomic nerves, which are responsible for involuntary bodily functions like capillary action, breathing, digestion, heart beat, that sort of thing."

That sort of thing. Dr. Lewis continues speaking to Jim, but I can't actually hear what she says because the movie soundtrack is suddenly, inexplicably, full of the roar and rush of the sea. I'm floating, alone, in my wing chair, queasy, and I wonder if I'm about to drown in this rush of facts, be engulfed --

Look, she's uncapping her pen again. Listen to her. Listen!

I hold tight to the arms of my chair. The sea recedes.

"-- when nerves get sufficiently demyelinated, the muscle fibers can atrophy and stop functioning. I'll show you."

Dr. Lewis's pen gets busy again.

"These are supposed to look like muscle cells," she explains a bit ruefully, "stacked up nice and symmetrically, like this." She's drawing tight rows of small, interlocked circles, stacked neatly like the oranges in the Korean superette across the street from our apartment.

"But this is the way your muscle cells look now: disorganized, chaotic." She makes another doodle of disorganized muscle cells that look like the oranges in the Korean market after our small children, Anna and Alex, accidentally knock into the display.

I get the picture.

I try to appear calm and rational, but my lips disobey and start to quiver. I hide them by assuming my best Thinker pose, but the shaking spreads to my hands, my arms, my entire body.

Stop that. Don't be a candy-ass. I want Dr. Lewis to think I'm brave. An Amazon. Superwoman. Jocular, the way she is.

What's the point?

I don't want to be a baby. I want to be strong. Solid steel. But I don't know if I can . . . .

Mortified, I feel very tiny, very sharp tears start way back under my eyeballs.

Stop that, damn it.

I push those tears so far down they may never worm their way back up.

I wish I could appear strong and jocular even though I feel just the opposite. If I can pretend to be brave, maybe someday I might be that way.

But with my shivering lips, I'm just about to be exposed as the lily-livered weenie I really am when --

There's a soft knock on the door.

Dr. David Younger enters. He's the sweet young doctor who performed my biopsies. He nods to the other actors in the movie, then perches on a love seat off to one side. His face registers absolutely nothing; he refuses to smile or even look at me or anyone else. This is totally unlike his formerly warm and gentle behavior in the O.R. Perhaps Central Casting sent a double?

Dr. Younger's eyes remain fixed on the second button of Dr. Lewis's white lab coat. She is clearly the star, here. I decide to soldier on with questions about the rest of the bad news.

"So -- what do you think is causing it -- the demyelination?"

"Could be antibodies, which are components in your blood that should attack bacteria or infections but in auto-immune diseases attack your own tissues. Or it could be vasculitis," Dr. Lewis continues, "an inflammation of the veins or arteries. We thought you might have vasculitis, but Dr. Younger found no evidence in any of the biopsies."

"Of course, the biopsy could have just missed it by half an inch or so," Dr. Younger informs us. "There's no way to rule it out completely."

Thank you, Dr. Younger, that is immensely reassuring and clarifies matters completely.

I bite my lips instead of snarling at him.

"You're sure the changes are caused by antibodies?" Jim asks

."Yes," both doctors answer together.

"What kind of antibodies?" Jim asks.

Now Dr. Lewis relaxes a bit and leans back in her chair. I think it's because she knows she's safe, on scientific ground, and not in that slushy affective realm where all those messy human emotions have a way of complicating conversations. No doubt she's reassured by the fact that I haven't wailed or shredded my garments.

"We don't know," she answers.

"Then how do you know antibodies caused the demyelination?" Jim questions, ever the litigator.

"We can't actually see the antibodies, but we can see the damage they caused."

Oof. Damage. Such an ugly word -- a punch in the gut.

"So you don't have to actually see the perpetrator to know the crime's being committed?" I ask.

"Right." Dr. Lewis smiles. She seems very pleased by this question, which indicates she's been fully understood.

I hide my quivering mouth again, this time to stifle a giggle.

No giggling. And what's so funny? This discussion isn't exactly comforting.

Not at all comforting. But at least no-one will be forced to watch me cry.

Now I let go and float softly up to the ceiling as if I'm the lone passenger in an invisible hot-air balloon. Or perhaps I am the balloon: beyond the pull of gravity, stopped only by the ceiling. I look down on everyone, shedding my feelings as easily as yesterday's musings. They drift away, evanescent as forgotten clouds.

Since this conversation isn't really about me, why not probe further?

"So, uh, Dr. Lewis, what are the best and worst case scenarios?"

Dr. Lewis stops playing with her pen. She takes a breath.

"Well, the best case is spontaneous remission. You might get better without any treatment. Or, next best, you might have a very good response to very low doses of steroids."

Now Dr. Lewis sits very still and looks directly at me. Our eyes lock for a very long moment.

"The worst case is death."

I stifle another giggle. Try to swallow.

She couldn't possibly be talking about me.

Hey, I don't like this scenario; I want to get my money back and go see another movie.

"But why, Dr. Lewis? It's not in the brain. It's not even in the spinal cord. You said it was peripheral neuropathy -- in the peripheral nervous system."

That's right; go, girlfriend. Pin that bitch-doctor right to the wall. That word "peripheral" has gotta mean "not as important."

"If all the myelin on all your peripheral nerves is destroyed," Dr. Lewis says without flinching, "you won't be able to breathe. You won't be able to live. You'll die."

I must be in the wrong room. Who is the poor son-of-a-bitch she's talking about? It can't be me. It really can't be.

Jim looks pale and frightened, palms sweating profusely. He opens his mouth to speak, but nothing comes out.

Oh, poor Jim. He looks so frightened. He must think Dr. Lewis is talking about me.

I look at Dr. Younger for help, but he's frowning, very busy studying the hairs on the backs of his hands and the buttonholes in his slightly threadbare white doctor coat. Even he looks depressed.

Dr. Lewis clears her throat.

"Now we have to discuss treatment options."

Oh, yeah? Forget it. I don't want to know about treatment. I don't want to think about it, or worry about it, or make decisions about it. I just want to get the hell out of here. Now.

Treatment. There's treatment. I should listen to this.

My incisions hurt. My nerves hurt. I just want to go home and take some pain-killer, then crawl under my paisley quilt and go to sleep.

Shut up -- don't be a weenie. There's treatment. Listen up.

I sit up straighter and clear my throat. "I have -- a lot of questions about treatment." I bite on this opportunity to take back control of the situation the way a puppy bites on a new slipper, and I won't let go.

Do something -- I want to do something.

"What's the treatment? When do we start?" I say.

"Whatever happens, the decision will be yours -- in conjunction with your rheumatologist, of course," Dr. Lewis states. "I will not be directly involved in your treatment."

You big chicken.

Now Jim pipes up, voice a bit squeaky. "What are the treatment options?"

"She could do nothing and wait."

Hey, what's this second-person "she" garbage? It's my privilege to dissociate from now till kingdom come, but don't talk about me as if I'm not in the room.

But what did she say? Do nothing and wait? Sounds great.

Sounds terrible.

"And if I don't choose to wait?" I ask Dr. Lewis.

"You could take corticosteroids. If they work, they could not only halt the progression of the disease but help promote re-myelination."

"So then I'd be cured?"

"No. None of the treatments will result in a cure. This is an incurable and chronic disease. There is no cure. Only treatment."

No cure.

Nobody looks at anybody else.

No cure. No --

Jim swallows hard, then speaks.

"How do you know which treatment is best?"

"We don't. We're not sure precisely what causes this, so we're not certain how to treat it. We just have to use our best guess."

"Can I take the steroids now?" I ask. "Can you give me some to take home? I want to get started."

Yeah, let's start killing those cockamamie little antibodies right now. Where's the medicine? Can I take it right here?

"Wait. Slow down. First we have to discuss the benefit-risk quotient of taking steroids."

I'm not sure I want to hear this.

This time Dr. Lewis talks without benefit of artwork. "Steroids work by reducing inflammation and cutting down your body's production of antibodies. But steroids only work about 50% of the time with peripheral neuropathy because there's usually not much inflammation. And you run the risk of major infections and other side effects when you take a big enough dose to suppress your immune system."

Suppress my immune system? In the middle of the AIDS epidemic?

"And you're not going to like the other side-effects of steroids: frequent infections, water retention, weight gain; risk of diabetes and osteoporosis; risk of cataracts and stomach ulcers; possible agitation, depression, and other psychological reactions."

Jim and I look first at each other, then down at the arabesque patterns on the rug.

"And, of course, you have to understand the purely cosmetic side-effects." Dr. Lewis pauses to make certain we're still listening. We are, crushing each others' fingers in a strange handshake, hearts sinking down to the basement of the hospital.

You mean there's more?

I bite the inside of my mouth until a tiny trickle of blood begins to flow.

Good. Excellent distraction. Little pain instead of big.

Dr. Lewis continues without blinking her thick, un-mascaraed eyelashes. "Most patients report thinning hair, chipmunk cheeks, and buffalo hump on the upper back."

"And what?"

"Buffalo hump. Because when you take steroids, fat migrates to all the fattest parts of you, including the upper back, thighs, hips, cheeks, butt --

"I get it."


Dr. Lewis sighs. "This isn't an easy decision: this stuff is swamp water. You don't want to take it unless you absolutely must."

"Are there any other options?" I ask, trying to lose myself in the meaningless pattern on the rug.

"Yes," she says with some regret, "and they're worse -- though they may turn out to be better for treating your particular disease." She pauses a beat, then plunges in. "There are the cytotoxic drugs -- chemotherapeutic agents. They're much more effective in suppressing antibodies, but cause temporary or permanent sterility, more extensive hair loss, extreme nausea, vomiting, etc. They also make you even more vulnerable to infections and perhaps, in the long run, to cancer."

A very long silence. The only things moving are dust motes, dancing in graceful slow-motion.

"Taking cytotoxic drugs is like having chemotherapy for cancer; it requires periodic hospitalizations while you puke your brains out."

Can't beat that tough-love honesty.

Dr. Lewis starts pushing papers into my crowded file. She glances at her phone, which is lighting up like a Christmas tree. We are clearly moving into the final scene of the movie.

"All of this will be decided in consultation with the rheumatologist who treats you. I'd like you to see Dr. Israeli Jaffe, head of rheumatology here at Columbia-Prez: an excellent, highly experienced doctor. He'll know more about this than anybody. Why don't you see what he says?" She uncaps her fancy fountain pen, writes his name and phone number on a prescription sheet, hands it to me.

"Isn't there anything else to try?" I ask desperately.

"What about things like meditation," Jim asks, "and -- and . . . "

"-- and visualization?" I add. "Do you think concentrating on being well can have any real effect on a disease like this?"

"I think whatever you can do to put yourself back in control of your life will be of benefit. Who knows? Many of my patients say meditation and visualization help them," Dr. Lewis says, suppressing another sigh.

"Perhaps prayer could help," Dr. Younger says softly from the back of the room. When I turn, he smiles at me with the same sweet gentleness I remember from the O.R.

There is another awkward silence, decorated with smiles.

"How's the leg healing?" Dr. Younger asks.

"Let's take a look at you," Dr. Lewis says, rising behind her desk.


* * *

The movie is over. We all troop into the tiny white Chamber of Horrors they call an Examining Room. Our very civil but increasingly alarming conversation devolves into a brief examination of my post-operative left leg, which looks to me as if it's been hacked apart in two places with a rusty can opener. Both doctors, however, crow a mite too ecstatically over what beautiful incisions they are, and how very nicely they're healing.

We wind up with my brief review of all the things I cannot do properly with my left leg: walk without a cane, go up or down stairs, put my heel on the ground, put on pantyhose, sleep, etc. When they begin to understand how much pain I have, they prescribe stronger medication. Then our hostess ushers us back into her consulting room.

Dr. Lewis closes my file and stacks it on top of her "finished" pile with what sounds, this time, like a sigh of relief. We all shake hands cordially, as if saying good-night at a macabre cocktail party. I suddenly feel as if I'm running mile twenty-eight of the New York City marathon; it's hard to find the gumption just to smile and shake hands. And -- am I actually supposed to say 'thank you'?

It will be years before I remember the most important insight offered on Diagnosis Day: "Perhaps prayer could help."

This quiet statement will come back to haunt -- and heal -- me.

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