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The plan
was to break open the tiny tabernacle, split the relic, swallow
it and see what transpired. To carry out this borderline sacrilegious
project, though it was not our intent to be irreverent in any
way, we used one of mother's steel steak knives, carefully dissecting
the microscopic sliver of St. Thérèse's shin bone,
no bigger than a pinhead, easier than swallowing half a baby aspirin.
For verification and camaraderie as much as anything, I enlisted
my sister Michele, thirteen months younger than myself, herself
a saint in training. Michele and I looked at each other and gulped.
The repercussions
were overwhelmingly uneventful. We wore ourselves weary during
the ensuing weeks waiting for a more powerful moment: a rainbow
above our house on Konzier Drive, say, or maybe a rose suddenly
blooming out of season. That's the way it was in “Fifteen
Saints for Girls,” the book that had riled me up and launched
my youthful fanaticism, pain and miracles somehow provocatively
entwined. Thérèse of Lisieux, known as “The
Little Flower” was my favorite. Born in France to a wealthy
family, the youngest of nine children, she had rejected worldly
pleasures and entered the contemplative order of Carmelite nuns
at age 15, then died of tuberculosis at 24. Her spiritual journey
included hair shirts and self-inflicted pain—like soap bubbles
through a wand, images as profound as they were confusing to an
eight-year-old zealot.
Giving up
chocolate bars for Lent seemed paltry by comparison, the measly
sacrifice of a spoiled, post-Depression kid whose level of suffering
had yet to exceed summer mosquito bites, easily negated by Dad,
who paid five cents per welt.
It was during
this phase of my girlhood that Uncle Tom—really a second
cousin and a priest—gave me an authentic relic of St. Thérèse,
a microscopic piece of her shin bone enshrined in an ornate filigree
case shaped like a sun, studded with red rubies, complete with
official Vatican papers. “Gross,” pronounced one of
my best friends as we'd sit for hours looking out the window,
listening to my transistor radio. But I was trapped by the sheer
possession of something so supernatural.
And there
was the imagined epigraph, unrevealed but significantly looming.
Completely convinced that miracles could happen to even the most
ordinary of girls, a repetitive tenet of the saintly biographies.
Also in my developing mind, was the concept of the American Indian
shaman, who used to uncover the medicinal powers of plants and
herbs by slowly exposing himself to an unknown plant substance
in tiny increments—first his skin, then lightly touching
his tongue, then finally ingesting a minuscule tidbit. It became
infinitely clear that the path to enlightenment was plausible.
One unexpected
development. Along with initiating “The Plan,” I quickly
realized my ominous conjecture justified the necessity of losing
the gold case. Mortals were far too attached to material goods,
I rationalized, not to mention that sooner or later, mother was
bound to ask about the relic. If she never saw it, we'd significantly
cut our chances of discovery. Telling a lie could defeat our good
intentions. Even worse, it might make the whole thing a sin. I
was still swinging on grapevines and hadnÕt yet developed the
worldly foresight to consider that a couple of those rubies might
have fed a small country.
We buried
the case at the bottom of the kitchen trash. By the time mother
rang the dinner bell that night, “The Plan” was beginning
to seem more like a Wally and Beaver caper than a heavenly prospectus.
I felt a stab of guilt, terror even. Had I really thought the
whole thing through? My list of fears compounded as the days wore
on with no miracles on the horizon, but to protect Michele, the
innocent victim of my overanxious quest for holiness, I kept these
to myself.
I shrugged
off the idea of an instant miracle—I hadn't actually asked
for anything specifically—and decided to evaluate the situation
like a fortune cookie limerick pasted hopefully on a refrigerator
door. That is, see if anything struck as the days passed.
The supernatural
had a surrealist stratagem sans mortal control. Sure. Miracles
could take days, maybe weeks? Miracles might require patience.
Pilgrims to Lourdes and Fatima were often healed spontaneously,
but they had made journeys in wheel chairs and on stretchers,
I reasoned, and deserved instant gratification. Christ rose Lazarus
from the dead in an instant, but he had a mere 33 years on the
planet to complete a mission that would have to last until Armageddon.
Meanwhile,
I came up with Plan II to circumvent any hazy wrongdoing regarding
the first. Michele and I would scour the daily newspaper, point
to a name in the obituaries and pray for that person all day.
It seemed a worthy project, something the Little Flower might
have done. “Fifteen Saints for Girls” said her glory
was making differences in small ways. I took the name Theresa
for my Confirmation in her honor, and because I wanted to be commensurably
holy, I waited for pain.
I got the
flu that year and had to miss New Year's dinner at Uncle Ed's,
ham studded with cloves, scalloped potatoes, fancy chocolates
and cashews. My fever was so high I secretly hoped it was all
part of being divinely tested. Mother and Dad let me lie in their
mahogany bed and watch TV, which wasn't so bad really. I wondered
if that even counted as pain. Michele got hit in the head with
a rock by Chuckie Gerson playing cowboys and Indians and had to
have stitches in her scalp. That counted for her.
Mother never
quizzed me once about the missing relic—an astonishing enough
miracle in and of itself.
The idea of hotly awaited, saintly pain thinned with time and
boys. I became consumed with how to make myself look more like
Cher than the Little Flower. I started reading Allen Ginsberg
and dating a Vietnam war resister who drove an MG with only one
door. It was the Sixties. St. Thérèse's shin bone
story had metamorphosed into good coffeehouse satire while retaining
a stoic and admirable legacy during the peace movement years.
Sometimes, when I'd see some odd thing in a thrift store or an
antique emporium, I'd wish I still had that exquisite gold case.
If you could
escape your fate, whose life would you step into? Put all lives
in one basket and you'd most likely choose your own. I was plagued
with colitis in my twenties but it went into remission. I was
divorced but fell madly in love again. My children were intelligent,
healthy, fun. I went back to college when they were teenagers,
graduated with a degree in journalism, bought my first house,
got my first writing job. Just when life seemed, relatively speaking,
wonderful, a strange, crushing pain began to shoot down my arm
in a most inhumane fashion. My neck and back muscles went into
severe spasm, more like flagstone than flesh. Doctors and surgeons
sighed at the pathology of my spine. It made sense for a football
player or a world class wrestler, not a food critic with a taste
for relics. Pain had become a snotty child playing an endless
game of tag, intent on driving me away from the things I loved
most.
Five years down the road, I am madly spilling my papers around
4 a.m., searching for an 800 number copied from a late night infomercial
for a miracle cream called “Blue Stuff.” I am in desperate
pain. In the cerebral world, anything called “Blue Stuff,”
advertised when all but bartenders and shift workers are asleep,
sounds nonsensical, but in the world of pain, where short-term
memory is a casualty, touting an anesthetic as “Blue Stuff”
seems completely logical. I wouldn't wake up and be able to recall,
say, a product called “Apocalypse Now.” I might remember
that it had a name like a movie that started with an “A.”
But “Blue Stuff,” I could remember that. And 40 dollars?
A price just high enough to make one stop and consider “Is
this a rip-off or a theatrical tour de force to cover up a clandestine
cure?” It's barely a bag of groceries. In the light of day,
more pain, less hope. I'm still looking for that damn piece of
paper.
Did I ever
pray for pain? C'mon. I was just a kid. I never meant to, and
if I did, claiming youth, I take it back.
I should confess that Prior to Pain, I maintained a legacy of
resisting support group types. As far back as high school, I refused
to join National Honor Society and declined having my picture
taken for the senior yearbook. Those touched-up photos looked
more like a funeral pose than the portrait of a young girl who
wore Love Beads and McCarthy buttons. It was the late 60s and
it all seemed so narcissistic when you had friends who were going
to prison instead of Vietnam, others coming home in body bags.
I was trying to stay out of the high school limelight and avoiding
Trivial at all costs.
Pain starts
like a war, a surprise aggressor taking victims in open revolt
during the night. You become the defenseless transgressed. It
strikes; you fight. At first you're in shock, struggling for equilibrium.
I had no perception of fear in the beginning. Just fight. Violent
retaliation. Fear creeps in as the pain fails to subside, and
as its intensity grows, so does its cruelty. After two years of
battle, muscles locked in perpetual spasm, persistent pain keeping
me from the things I loved most, enough physical therapy that
my insurance company informed me I was close to reaching my “lifetime”
limit, I decided to join a Pain Group.
“You'll
never come back,” I remember Russell, a long time regular,
saying after my first foray into the Pain Group, and I knew this
was meant as a challenge. I was a cynical smart aleck that first
session, firing questions at the doctor, hammering away at the
biology of pain, determined to uncover any secrets being kept
from me, somewhere in France probably, places where the movie
stars and people with money go for cures. Run down and isolated
for so long, I was surprised by my re-emerging spunk. With something
new to liquefy the loneliness, I couldn't wait for 6 o'clock on
Thursdays.
Somehow, a
clinical room in an over-lit hospital became our secret club.
We'd turn the lights down low, fix each other cups of tea, trade
books and tapes, weird supplements, secrets for pain-jolting,
middle of the night meltdowns. We were held together in combat.
My comrades
in pain gasped when I said I didn't pray. I didn't take prayer
literally, that is, I didn't perceive it as one-on-one connection
at a bargaining table between a divine entity and a creature like
myself. But because of them I began a ritual conversation I call
praying. I wish for small things, mostly short periods of relief.
A year? 6 months? Could I just get that? Every other day? Give
it to me every other day. Break it into half a day? Sometimes
I sneak in asking for a good nightÕs sleep. Sometimes I make vows.
“I'll do something that really matters. I'll go to hospitals
and sit with people in dim rooms who need me.” Of course,
I strike bargains, make promises. “Just take the damn pain
away and I'll carry placards for research, start marathons for
money, fight the nonsense about banning pain medications because
they are being used as street drugs.” Sometimes, I just think
“Oh please give everyone a few days of real, unrelenting
pain,” and then I can't help but pick out a particular nemesis
or two, something Thérèse of Liseux would have flogged
herself bloody for. And then my Catholic schoolgirl guilt invades
my conscience and I apologize. I ask for the pain I had back in
1999. That would be fine.
One of my physical therapists meditates early in the morning and
in one of these moments, it came to her that I should peck on
my computer while sitting on one of those giant, inflatable exercise
balls. She ordered one according to the length of my legs, and
other than when I have to make a deadline, in which case I seem
to need the same hard stool I've always sat on, I use the ball.
It's a pretty inane picture if you step back and take it in. Regardless
of ergonomics, I am able to write less and less.
I fail to
grasp the hypocrisy that glamorizes silent suffering. I have little
patience for false bravado. Why are people who supposedly suffer
quietly the “good people?” I've thought of blaming Jackie
Kennedy somewhere in there (even Jesus cried out from the cross)
but I know that's not fair. Jackie rightfully held herself together
bravely for the nation during the dark days following Kennedy's
assassination But when she was dying of cancer, behind the dark
glasses and head scarves, I hope she cried. I really do. People
came right up to Jesus and begged for pain relief. They moaned.
They cried. He never told them to buck up and be silent. He placed
his hands on them.
“There
are no bridges to let anyone in on the dragons of your private
pain world,” says my husband Brad, who has had Crohn's disease
since he was 20 and knows something about getting sick when your
life is just ahead of you. Brad was a college student, a history
major, a drummer, when he started having embarrassing gastrointestinal
symptoms—painful bloating, cramping, gas. He had never heard
of Crohn's disease. His descent into illness involved a year of
undiagnosed symptoms. Just stress, maybe ulcers. Watch your diet,
he was told. The pain kept escalating, but of course, you canÕt
see pain. Barium eventually revealed Crohn's disease.
The term “incurable”
rang in his head. He graduated from college a term early, took
a job, all the while growing sicker and sicker. Finally, he took
a month off. Two months later, he could barely walk or eat. Three
weeks after that, he started vomiting black gruel. His bowel had
a pin-hole perforation but the doctors hadn't discovered it with
all the fine-tuned testing. They forced an NG (nasal gut) tube
down his throat. “They hold you down, your eyes tear up,
you feel like you'll choke to death. In retrospect, I've had good
people do it, and I've had beginners—and believe me, you
don't want a beginner.”
Your body
creates about a quart of gastro-intestinal fluids each day if
you are properly hydrated, even if you don't eat, so by emptying
his bowels the pain eased up and the perforation remained undetected.
After 10 days they pulled the tube. Spying a cracker on his hospital
neighbor's tray, he snuck two bites. The cracker turned out to
be the proverbial straw—13-14 inches of weakened intestine
split open within the time it took the Saltine to travel the length
of his small bowel. He got out two yelps before his right side
became paralyzed. “I didn't need anybody to tell me I was
dying. At that point, you simply don't care. You just want it
to stop.”
Only about
3 percent of Crohn's patients ever rupture. But rupturing a second
time? Doctors say it just doesn't happen. When it did almost 20
years later, I was at work. Brad had been going downhill steadily
for months. During a pre-surgical consult at Cleveland Clinic,
it had been determined that he had to have more small bowel removed.
I flinched, asking the specialist to refer us to a Pittsburgh
gastroenterologist, “just in case.” When you live with
someone with a chronic illness, the “what if” syndrome
is a life preserver. “What if we didn't have time to Life-Flight
him to Cleveland if something went wrong pre-scheduled surgery?
What if...” Brad was so weak that he resisted another doctor
visit, but I dragged him anyway. The doctor in Pittsburgh, trained
by the famed surgeon from Cleveland, sat knee-to-knee with Brad,
looking him right in the eye—little things that can make
doctors welcomingly human. He reviewed his films carefully, agreed
that surgery was imminent. As we left, he mentioned that we were
his last patients that day, that he was off on a long-awaited
vacation with his wife.I tucked his card into my coat pocket.
“Bon voyage,” I said, shaking his hand. “I LIKE
him,” Brad managed to croak. I went off to work, leaving
Brad in his world of pain. Shortly after I arrived, the telephone
rang. “You better come home,” Brad squeaked. On the
street, I could hear him through the thick stone walls of our
old house, a deadly, haunting wail. He emerged from the garbage
can long enough to call out “I've ruptured.” I phoned
911, pulled the doctor's card out of my coat pocket. “He's
gone, the secretary barked. “GONE. He doesn't even have his
pager.” I garbled my number anyway. As the ambulance came
roaring up the drive, the phone rang. “I'll meet you at the
E.R.,” the doctor said. The memory of the relic flickered
as my focus dissolved. As miracles can be slightly imperfect,
Brad was forced to spend the night writhing in pain because though
the good doctor stayed behind, most likely pissed off his wife,
not to mention saved Brad's life, he did not think it possible
that Brad ruptured a second time. I saw pain that night I hope
to never see again.
“ You have been given the opportunity to experience chronic
pain,” began a Cleveland Clinic spine specialist as he walked
into the room after reviewing my MRIs. I slumped lower into my
chair, stared at the ceiling. This, I had discovered, had become
the latest buzz-phrase, a hip approach in the mode of psychobabble
when you can't retrieve the patient from the pit back to the natural
world. The nouveau way of lowering the boom, direct but pseudo-far
Eastern. If only I had a baseball bat, I imagined, I could take
a swing at his knee cap and then calmly, clinically, with perfect,
detached professionalism, recite his lines back to him.
Again, I apologize
to the deity.
I wanted to
ask about Norman Cousins, ascorbic acid IVs, Andrew Weil, hyperbaric
chambers, intramuscular Botox, subcutaneous administrration of
growth hormone. An experimental pain drug that doesn't turn your
brain blotto?
Instead,
I gave him the look I used to give my mother when I was sixteen,
then talked about him loudly when he left the room, knowing he
could hear me. He was nicer when he came back, with literature
to quiet me down, offering me an extended stay we both knew my
insurance wouldn't pay for. We even got friendly for a moment,
engaged in light banter. I asked him to direct us to a restaurant,
envisioning him swirling an after-work cocktail with a colleague,
flushing the day's case residue out of his system.
People tend to shun the ugliness of pain, partly because it makes
the onlooker feel helpless, depressed, but mostly because the
onlooker realizes there's nothing but sheer luck between themselves
and a similar fate. Pain research will never escalate if those
of us who are in pain don't rail. Why don't we? Because we're
afraid. Powerless. You quickly become marginalized if you complain.
The reasons are as ambiguous as they are complex, but I can tell
you there's a constant low humming in the back of our minds that
keeps us silent—whatever relief we've been granted may be
taken away. Practioners have to navigate a maze of insurance issues
and puritanical drug regulations distracting them from the metaphysical
and ethical issues of pain management. We're sent to pain clinics
who are closing their doors and sending us back to the primary
care doctors who sent us there in the first place. Doctors may
mistake our pain for hysteria and write us off as malcontents.
Lucky you are to find a doctor who has suffered severe pain, either
chronically or acutely, because the subject matter is given scant
attention in medical training. The rights of the ill have been
so trampled down by the “War on Drugs” that the legitimate
patient who needs pain medication has to jump through such laborious
hoops that I've heard 80-year-old women in pharmacy lines say
they are treated like street addicts.
New Year's Eve. Instead of making a last minute stop for a bottle
of bubbly, I sit in an outpatient hospital room for about 8 hours,
waiting for a doctor to enter my neck with a needle, cauterizing
nerves. I had been told not to take my muscle relaxants. As a
result, my neck was like a stone pillar. The doctor kept coming
around, engaging in rather lengthy discussions. The more we talked
the less we liked each other, and the less we liked each other,
the more reluctant I was to surrender to the procedure. I was
waffling up until the last moment, chickening out, recanting,
back and forth, something loose inside of me clawing away at a
gut feeling of impending apprehension. When I was finally wheeled
into the operating room, stuck on a gurney big enough for a skinny
midget, strapped down, given no anesthetic, I was trembling. Of
sound mind sans medication, I distinctly remember being told “Call
out if you feel any pain.” The needle went in, blocked by
spasm.
I gasped when
the pain caught me by surprise, as I'd been instructed. The doctor
ripped off his rubber gloves, aborting the procedure. I called
faintly after him “Please, let's try again. I'll try again.”
But he was off, down the hall with a plastic model of the spine,
expounding with great rancor. My husband said he could not make
out much of the heady medical jargon, but that the doctor resembled
a man engaged in damage control in the spin room of a political
campaign.
Meanwhile,
half naked and out of options, I felt small, lost, abandoned,
Hester Prynne in a roomful of gawking residents, a scarlet letter
on my chest. I hung my head, dressed and slumped in one of the
vinyl hospital lobby chairs waiting for the car. And I started
to cry. And cry. It was New Year's Eve and I cried because there
were so many people behind those walls just hanging on for their
next dose. I cried for Brad all over again, for kids all over
the world uprooted from childhood by pain. I cried because Jackie
Kennedy didn't. I cried for all the choking eulogies praising
silent suffering. I cried because I find silence demeaning, not
courageous. I cried because I am in too much pain to sit at the
computer and browse the Internet to figure out if somewhere, someone
has found something I haven't tried. I cried because my muscles
were slamming into my spine like a wrecking ball and “Blue
Stuff” didn't work.
Can I remember what it was like NOT to have pain, a hypnotist
asked me the other day. I stopped for a moment. “Yeah, I
do,” I said like an overeager bride. “I DO.” “Then
I can help you,” she said. “But not today.” My
expression fell harder than a kid who had just lost heaping double
scoops from the top of a sugar cone. “Next week I may have
an opening.” She pulled out her smooth leather appointment
book. “Of course, my services are not covered by insurance.
The fee is ninety dollars, payable at the end of each session.”
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