When I was born, my umbilical cord
was attached to my face. The doctors
were able to tie me off and use part of the cord to fashion an ear for me; my left ear is actually my belly button. I
was lucky in that my doctors got it right, because the same thing happened to
my brother eight years earlier in 1960, but when they tied him off, they
shorted him a lobe. Instead he got a
gnarly little lump of flesh. When my
brother was a teenager and wanted to get his ear pierced, there wasn’t even
enough earlobe material on his left side to put a piercing through, so he got
his right ear pierced instead.
I mention the earlobe situation because
in moments of aggravation, it seems like I’ve been tied to America’s medical
establishment ever since, one way or another.
There was the Filipino doctor in 1982 who took a quick look at me and
called my mother at home later to tell her, in broken English, that I had
herpes. That was awesome. I certainly did not have herpes, for I was 14 and pristine, but it’s pretty hard to
argue that when a doctor is practically shouting the word over the phone to
your mother, a word coming out sounding much more like “happy's” to me as I
listened in the background.
That first major misdiagnosis put
me in a stressful and emotionally exhausting position that culminated in my
sitting on a kitchen chair in near-paralysis, trying to explain the situation
to my parents after my dad got home from work.
I don’t know how my mouth managed to move. I had to actually say the word “herpes” to
them. I thought I might die.
Now I live in Arizona with
fibromyalgia, my inner roommate, as if I needed somebody else in there. Fibromyalgia is like having arthritis of
everything internal, and it costs about a jillion dollars out of pocket to
diagnose because only through the process of elimination can a diagnosis be
determined, a fact taken full advantage of by the doctors here in Phoenix. Personally, I feel they eliminated a lot of
things that I obviously didn’t have, like elephantiasis. Just because my brother has it doesn’t mean I
do.
Fibromyalgia affects different
people differently. For me, it’s like having
groups of tiny flying monkeys living in my body, dormantly hanging out, until
they decide for no particular reason to fly around and bite me, sending hot
shooting pain across the top of my hand, or down my neck. I have both military monkeys and circus gypsy
monkeys; one thing they all like to do is swing on my nerves.
I’ll never forget the first time I
saw a doctor for something weird: throbbing, fire-like pain up and down my
right arm. I’d been carrying both the
arm and the pain around very tenderly for about three months, not knowing what
to do. I’d sit in my recliner at night,
exhausted, my right arm resting on ice packs, thinking about why I didn’t want
to see a doctor. Finally, one day I just
did. I’d never been to an Urgent Care
before, but I’d heard they were very busy and one could wait all day to be
served. So, I packed a beach bag full of
reading material, healthy snacks, and Diet Mountain Dew. I put it in the backseat of my car and went
to teach my classes. I stopped by my
house real quick, then drove to Urgent Care as the sun went down. I walked in with my beach bag and my bed
pillow, ready to stay the night if necessary.
The only people waiting were a
little family whose little boy had put a game up his nose. Them, and me—and I was called back first. Apparently this place’s definition of “urgent”
differed from mine, or maybe they had read my intake paperwork, which had me
checking off symptoms that surprised even me: Are you on fire? Yes.
Are you skeletal? Why, yes I
am. Once I was back with the doctor, and
I remember this so clearly, he turned to the wretch that I had become and said with
pity in his eyes, “Arizona. Not good place to be sick.” Then he handed me some prescriptions and off
I went on the journey I’m still on (not via the prescriptions though. I’m not a
pill girl).
So here I am and it is today, a
work day for most but a vacation day for me because I’m a teacher and we’re on
break. I’m taking advantage of the free
time I have to finally make some phone calls and do some research for new stuff
on fibromyalgia. I open a drawer and
take out the white sheets of paper from my physical therapy place, the ones
with pictures of people doing weird stretches and exercises. I need to start doing those again.
When I was in my twenties, I would
use time off like this to do maintenance stuff on my car, so it wouldn’t
break down on me next semester. Now I do
that for my body.
So I’m on the phone, trying to be
nice, having been on the phone all morning as I fixed and tweaked and paid and
listened and held and arranged and paid some more and checked back later to make sure that
different doctors’ offices were collaborating on my behalf. Ha. Ha. Ha.
I want to be nice to everyone because my mind is so busy trying to
process what happened in Newtown that it’s not communicating with me
anymore. I’m on my own again, and you can't go wrong with nice.
Nabe, my neighbor, comes over in
the middle of all this. We share custody
of our youngest child, Leo, an eight month old kitten. Nabe and Leo are playing in the living room
while I talk on the phone to the woman who will be the last person I inflict
myself on today. My niceness runs out
when she tells me, tartly, that more pills will be waiting for me at the
drugstore. “That’s the temporary
solution our office can provide for you.”
I am tired of temporary
solutions. I ask the lady why she’s
being so short with me when clearly I am the one suffering from not one but two
miswritten prescriptions by some kind of doctor runner-up who didn’t even ask
me to take my clothes off for my annual physical. For twenty-five bucks I want my naked body
thoroughly examined, not more pills and the wrong ones at that.
“I have other patients waiting,”
the woman says, with only 10% patience in her voice. I say okay and thank her, and we finally hang
up. I walk over to where Nabe is sitting
on the couch. Leo is curled up next to
him, asleep. I stand there in all of
my stay-at-home glory, curly gray hairs sticking out everywhere.
“You know what was wrong with that
conversation?” Nabe says.
“I lost my temper, and I regret that,” I say. “It’s
not that woman’s fault that my doctor’s office sucks.”
We look at each other and he seems
surprised that I got it.
“But you don’t know the history to
all that!” I say. “Any person in their right mind would go nuts trying to deal
with all this disorganization and the resulting lack of good care, my care, and then just basically being told to go back to square one. Nobody is helping
me, but they want me to make all these appointments so they can make money off
me. That’s just how I feel.”
But Nabe never wants to hear
excuses. The build-up to today doesn’t
matter to him. He scolds me for being
rude, and he’s right. Today is today.
It does not have to exist with the awfulness of the past pulling it down,
or the freak show of the future scaring it away. Today is innocent.
I love how Nabe can get me to better
places.

It's good to have people in our lives who make us better people ourselves ...
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