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.
you've got a disease," she announces, fiddling
with a file clip that faintly resembles a prehistoric
words seem to unfurl above me, emblazoned on a
white satin ribbon. Well, this is an Annunciation.
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
. . . .
THE MOVIE IN MY MIND
DIAGNOSIS AND THE DISSOCIATION
DAY: Office of Dr. Linda Lewis at the Neurological
Institute in New York City. October 11, 1988,
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.
you've got a disease," Dr. Lewis says."What
disease?" I ask.
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."
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."
sure it's not multiple sclerosis? Or Lou Gehrig's
We're sure," Dr. Lewis answers.
it out loud. Please."
don't have MS or ALS."
relaxes a bit, wiping his sweaty palms on his
that's a relief," I say, relaxing for a nano-second.
Then I'm bolt upright again.
it affect my brain?"
do you know? I mean, how can you be sure?"
in the brain and spine -- the central nervous
system -- is chemically different
peripheral myelin. They're each attacked by different
"Tell us again what myelin has to do with
it?" I ask.
insulates nerves the way the outside rubber coating
insulates an electric cord. It assures a smooth
flow of the electrical impulses that make muscles
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.
-- 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."
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.
that sketch; too scary. Is that what's actually
going on inside my body?
the nerves stop working properly?" Jim asks.
says Dr. Lewis, capping her pen.
the nerves?" I ask.
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
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
she's uncapping her pen again. Listen to her.
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."
Lewis's pen gets busy again.
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.
get the picture.
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.
that. Don't be a candy-ass. I want Dr. Lewis to
think I'm brave. An Amazon. Superwoman. Jocular,
the way she is.
don't want to be a baby. I want to be strong.
Solid steel. But I don't know if I can . . . .
I feel very tiny, very sharp tears start way back
under my eyeballs.
that, damn it.
push those tears so far down they may never worm
their way back up.
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.
with my shivering lips, I'm just about to be exposed
as the lily-livered weenie I really am when --
a soft knock on the door.
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?
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.
-- what do you think is causing it -- the demyelination?"
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."
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."
you, Dr. Younger, that is immensely reassuring
and clarifies matters completely.
bite my lips instead of snarling at him.
sure the changes are caused by antibodies?"
both doctors answer together.
kind of antibodies?" Jim asks.
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.
don't know," she answers.
how do you know antibodies caused the demyelination?"
Jim questions, ever the
can't actually see the antibodies, but we can
see the damage they caused."
Damage. Such an ugly word -- a punch in the gut.
you don't have to actually see the perpetrator
to know the crime's being committed?" I ask.
Dr. Lewis smiles. She seems very pleased by this
question, which indicates she's been fully understood.
hide my quivering mouth again, this time to stifle
giggling. And what's so funny? This discussion
isn't exactly comforting.
at all comforting. But at least no-one will be
forced to watch me cry.
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.
this conversation isn't really about me, why not
uh, Dr. Lewis, what are the best and worst case
Lewis stops playing with her pen. She takes a
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."
Dr. Lewis sits very still and looks directly at
me. Our eyes lock for a very long moment.
worst case is death."
stifle another giggle. Try to swallow.
couldn't possibly be talking about me.
I don't like this scenario; I want to get my money
back and go see another movie.
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."
right; go, girlfriend. Pin that bitch-doctor right
to the wall. That word "peripheral"
has gotta mean "not as important."
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."
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
looks pale and frightened, palms sweating profusely.
He opens his mouth to speak, but nothing comes
poor Jim. He looks so frightened. He must think
Dr. Lewis is talking about me.
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.
Lewis clears her throat.
we have to discuss treatment options."
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.
There's treatment. I should listen to this.
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.
up -- don't be a weenie. There's treatment. Listen
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.
something -- I want to do something.
the treatment? When do we start?" I say.
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."
Jim pipes up, voice a bit squeaky. "What
are the treatment options?"
could do nothing and wait."
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.
what did she say? Do nothing and wait? Sounds
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?"
None of the treatments will result in a cure.
This is an incurable and chronic disease. There
is no cure. Only treatment."
looks at anybody else.
cure. No --
swallows hard, then speaks.
do you know which treatment is best?"
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."
I take the steroids now?" I ask. "Can
you give me some to take home? I want to get started."
let's start killing those cockamamie little antibodies
right now. Where's the medicine? Can I take it
Slow down. First we have to discuss the benefit-risk
quotient of taking steroids."
not sure I want to hear 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
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
and I look first at each other, then down at the
arabesque patterns on the rug.
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.
mean there's more?
bite the inside of my mouth until a tiny trickle
of blood begins to flow.
Excellent distraction. Little pain instead of
Lewis continues without blinking her thick, un-mascaraed
eyelashes. "Most patients report thinning
hair, chipmunk cheeks, and buffalo hump on the
hump. Because when you take steroids, fat migrates
to all the fattest parts of you, including the
upper back, thighs, hips, cheeks, butt --
Lewis sighs. "This isn't an easy decision:
this stuff is swamp water. You don't want to take
it unless you absolutely must."
there any other options?" I ask, trying to
lose myself in the meaningless pattern on the
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."
very long silence. The only things moving are
dust motes, dancing in graceful slow-motion.
cytotoxic drugs is like having chemotherapy for
cancer; it requires periodic hospitalizations
while you puke your brains out."
beat that tough-love honesty.
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.
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.
there anything else to try?" I ask desperately.
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?"
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.
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.
is another awkward silence, decorated with smiles.
the leg healing?" Dr. Younger asks.
take a look at you," Dr. Lewis says, rising
behind her desk.
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.
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.
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'?
will be years before I remember the most important
insight offered on Diagnosis Day: "Perhaps
prayer could help."
quiet statement will come back to haunt -- and
heal -- me.
us with your comments.