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WORDS TO LIVE BY
. . . OR NOT
There are many words you never want your doctor to use.
“Amputate,” “incurable” and “fatal” are high on that at list, but at
the very least, they convey a sense of certainty. Bad news is,
shall we say, bad, but at
least it’s news; even worse than a dire diagnosis is no diagnosis at
all. Medical mysteries are never welcome, particularly if the
lack of a precise name or treatment or understanding of a malady
necessitates round after round of testing, poking, prodding and
interrogation by every conceivable specialist.
It comes down to this fundamental concept: You Never Want To Be The
First. No one wants to be Patient 001 with a new disease,
disorder or bad-health what-have-you. There may be some glamour
in having your name all over the newspaper headlines, but, well, I’d
prefer it not be in the context of “Doug’s Disease Wipes Out Entire
City of Omaha” or “Reporter Wins Pulitzer For Heart-wrenching Tale of
Man With Mystery Disease.”
Personally — and I understand that not everyone feels this way — I’d
rather not be known as a freak, especially of the medical
variety. I’d prefer that my doctor never, ever call up a
colleague while examining me to say, “Dude, you gotta check this
out! I’ve never seen this before! This is . . . so . . .
weird!” (“Dude” is another term I never want to pass from my
doctor’s lips, by the way, as are “bro” and “homey,” as in “Homey,
you’d best not eat raw vegetables for a while, cuz, bro, that shit will
do some crazy shit to your
shit.”)
You don’t want to be an anomaly (or, in layman’s terms, a “wacko”),
health-wise. You don’t want to be the first to receive some
oddball new treatment that may or may not cause some new, bizarre side
effect (such as growing an extra, external colon); you don’t want to be
forever known as the person for whom an illness is named.
Usually, when something gets named for a particular person – a
building, a star, a virus – that person is dead.
On top of the whole death thing, though, adding insult to the very
worst sort of injury, is the fact that if you have a
medical-something named for you, this means that your unfortunate life
will be depicted in a major motion picture starring some actor
desperate for an Oscar. Your life will be reduced to two hours of
melodrama so tragic and overwhelming that the tears practically wash
off the very screen and into the theater. Ebert will call it
trite and say that the actor who played you was "unconvincing."
In addition to Special Movie Events, there will also be 5K runs, silent
auctions and other fundraisers, at
which your life will be referred to in the past tense, even if you’re
technically still alive, and your name will be invoked in overwrought
sentences that include terms such as “valiant fight,” “never give up”
and “inspiration to us all.” Worse yet, these words will be
flung, with forced sincerity, by whichever B-list celebrity takes up
the cause as a desperate effort to gain a bit of positive P.R.
That’s the real danger of having a disease named after you, worse than
death, even worse being the subject of a five-hanky Very Special Movie
Event: you might become the cause du
jour for vapid young celebrities. Paris Hilton or Ashton
Kutcher might go on Entertainment
Tonight and talk about your condition and how much they care about the vast tragedy of it
all. There could even be trendy faux-retro t-shirts or trucker
hats involved: Save Doug.
And there’s nothing you
can do about it.
Paris, Ashton and pals will have to wait, though. I am happy
to report that I still have not had a disease or condition or malady or
illness or rash, etc., etc. named after me.
For a while there, though, I thought it could happen.
I had a fever. I went to the clinic. They sent me home and
told me to come back if it persisted. It did. I went to the
clinic. They sent me home and told me to come back. . . . Do you
see a pattern here? Yup. Do you, in fact, detect a pattern
that may have
persisted for several bouts of fever, or rather one prolonged bouth
that never actually
went away? Yes, you do. You are clever.
Less clever was one of the doctors I encountered at the hospital, which
is where I wound up, eventually, after the doctors at the clinic
decided that perhaps there was something to my claims that I was
really, honestly, sick and it really, honestly, was not going
away. This
doctor (not to be confused with the previously-described Dr. Scalpel)
was a middle-aged
infectious disease specialist with a brow he was forever furrowing
and an impeccably-trimmed goatee he was forever stroking. I could
never quite figure out if he was genuinely thinking all the time or
simply liked to project an
appearance of never-ending rumination. Eventually, I concluded
that all that furrowing and
stroking were probably not signs
that Serious Matters were being
turned over in his head, given the not-so-deep words that came forth
when he opened his mouth to make
his pronouncements.
Dr. Ruminator asked me many questions over the course of several days,
and after each of my responses, he would pause briefly, furrow, stroke,
and utter one of the words I never want to hear my doctor say.
“Mysterious.”
And then he would continue the questions, apparently convinced that I
had
some truly bizarre condition, but confounded by its precise origin or
even its exact identity.
“And you’ve not been in any other countries lately?”
“No.”
Pause. Furrow. Stroke. “Hmmm . . . Mysterious.”
No, I had not been around anyone with any strange illnesses, to my
knowledge. I had not consumed raw meat of any kind. I had
not been around livestock. I had not done
any number of other things that he asked me about. I had, in
fact, been working in an office building in a major city, living the
boring commuter life of countless Americans. How I got this
malady, whatever it was, I had no clue.
And neither, it turned out, did he.
“Mysterious.”
I was simply exhausted, always, and feverish, always, and unable to eat
much. It was clear to Dr. Ruminator, and all of his colleagues,
that I had some infection, and that it was somehow related to
Crohn’s. Other than that, though, it was all very perplexing and
most Mysterious.
This went on for several days. Nine days, actually. And
then four more after a cheery two-day respite from the hospital, during
which I mostly lay around and moped and wondered if I should probably
maybe be back to the E.R. And maybe this time, I hoped, after
they poked
the pincushions protruding from my shoulder sockets with more of their
ten-foot needles, and forced more foul-tasting liquids down my throat
in preparation for scans and X-rays and all manner of tests involving
bright lights and lead vests and anxiety about whether I will ever be
able to reproduce, and after they carefully examined my stool for the
thousandth time, looking for creepy-crawly things (just in case I was
lying about not having sex with barnyard creatures in tropical
countries while eating shellfish) . . . maybe this time, after all of
that, there would be an answer, a diagnosis of a specific illness, one
that other people had suffered from before, one that would not be named
after me.
But no.
“Mysterious” was the only diagnosis offered. Over and over.
Each day brought new tests, and more rounds of the old tests, and
further questions . . . and more stroking and furrowing and murmuring
of that word: “Mysterious.”
Dr. Scalpel, the gastroenterologist, seemed to think that cutting out
my colon would solve the
problem, whatever it was; the other doctors (and there were many)
favored a less-drastic approach. They knew it was an infection,
and tried every possible combination of pills to combat it. But
without knowing what it was, exactly, they couldn’t figure out the best
way to fight it, and so the fatigue and fever and general misery (and
contempt for the world) persisted, albeit, thanks to the copious drugs,
in a slightly more-tolerable
form than the initial version.
Six weeks after I first went into the hospital, they found the
answer. It was . . . well, I don’t recall. Some sort of
parasite or infection or something with a long and scary name that did
not, thankfully, incorporate my own name in any way. Two weeks of
four-times-a-day treatments with a nausea-inducing antibiotic kicked
the Mysterious infection out of my body, this time for good.
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