When should I take my next breath? Should I beat my heart
now? Do I need to change my body temperature? What is my response to the
stranger who just said “Good Morning”? Where do I place my foot to avoid
stumbling?
There are so many actions that we perform every day without
a nanosecond of conscious thought.
Automated, habituated, ritualized to free our conscious mind to attend
to other matters—ones that do require some thought. This automation is efficient and effective. It is a beautiful ballet that flows
gracefully and effortlessly. Until it
fails. Until something changes and trips
you up. Until you stumble.
And
how is Bailey?
Oh,
she is…
Shit! What do I
say? The autonomic response sequence has
failed and a decision tree of questions floods my consciousness. Who are the
inquirers? What is their relationship to me? To Bailey? How often are we likely
to see them over the next several weeks? Would they want to know the truth? Do
I want them to know the truth? Could they provide assistance later if needed?
Would they provide assistance if asked? Will it change how they relate to
Bailey? I don’t know. I am not
sure. I stumble.
Oh, she is… umm… ahem…
Thud.
______________
Maia was a beautiful young Mexican girl, with impossibly
wide eyes as black as the loosely braided hair that fell past the mid of her
back. She was proud of her hair, which
distinguished her from the other terminally ill kids in the program—the one’s
with cancer whose bodies had been ravaged by the chemicals that failed to make
them better. Maia did not have cancer
but would nevertheless die in a couple of months from a congenital heart
defect—the same anomaly that rendered her heart incapable of supporting a
larger body and left her looking 6 instead of 10. She knew she was dying and, by this point in
her treatment, had even accepted it.
What threw her, what confused her, was how other people reacted and how
so few accepted this fact of her life.
Hang
in there, you’ll get better -- No, she really wouldn’t.
I’m
sure your doctors are doing everything they can to get you better -- No,
everyone had agreed to stop doing anything to get her better.
She no longer knew how to respond to even the simplest
interactions. Her typical responses no
longer worked. She stumbled.
One day, during a now frequent but brief inpatient
admission, Maia decided to experiment. I
wish she would have forewarned me but, as she later explained, I would have
tried to talk her out of it. We were
walking down the halls, IV hanger squeaking between us, when a colleague
stopped to say hello and ask, “Who is this beautiful girl accompanying
you?” The greeting was not unusual—Maia
was a beautiful child who was obviously sick and being treated in a large, cold
hospital. Hospital staff often greeted
us and asked about her. The question was
the same, but the response?
Hi, I’m Maia. I’m dying.
How are you?
She said it quickly and matter-of-factly, but with the lilt
and melody of a happy little girl. She did not pause or stammer, and there was
not even a dash of sarcasm. “Hi, I’m
Maia and I’m dying.” Now it was the
autonomic response sequence of my colleague that failed, it was my inquirer
that tripped as Maia yanked my hand to walk on—Maia smiling and me turning to
my colleague and shrugging my shoulders.
Maia did this several more times that afternoon and later
tried different responses. She was
experimenting. She was trying on new reactions,
as this very young, very sick but very wise little girl knew that the old ones
were no longer of any use.
______________
I need to experiment.
I need to find new responses and develop new action sequences. The old
ones are no longer of any use.
And how is Bailey?
She is… umm… ahem… she’s doing well
today.
Whew. Back on my
feet, regained my step. This time. But I
am not sure it is the right response or even one with which I am satisfied. What do you
think?
[Editorial note: I wanted to include Maia’s last drawing in
this post, but am having a hard time finding it. Hopefully, I will be able to add it soon.]
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