There’s a guy I know who can only move his eyes.
Next
time you’re lying in bed, slowly relax your entire body ‘til you’re nice and
slack, then open your eyes and look around.
Imagine that’s all you can do, just look around. Now stop breathing.
This
guy, who can’t move his legs when they’re restless, can’t scratch his nose,
can’t wipe his bottom, can’t re-adjust in his chair when his butt gets numb,
can’t eat a hamburger, can’t wiggle his toes in a creek, can’t hold his pee
when he needs to go, can’t shoo a fly from his face, can’t apply lip balm when
his lips are chapped, can’t dance with someone or hold them close, can’t raise
his hand to ask a question or get attention, can’t drive, can’t pet a dog, can’t
warm his hands over a fire, can’t argue over the best coffee in town, can’t do
99.9% of the things that give us joy and meaning , including breathing – this guy is the poster child
for good excuses to do nothing and be bitter.
I feel justified in being bitter and doing
nothing when I don’t get my way, or when I’m out of coffee creamer or when
someone doesn’t appreciate my extraordinary presence; I feel the urge to hang
my head, when I’m with him.
There
is, however, something he can
do. He can have a good attitude about his situation, which he chooses to
do. He discovers what things he can do and pursues those things relentlessly
until he masters them.
He discovered that by thinking
about every breath he had just enough strength in his diaphragm to breathe
shallowly, so during the day he doesn’t need the ventilator; it took him four
years to train himself to do this. He discovered
he could move his right thumb and index finger a few millimeters and his left
thumb a bit less. This was all the
incentive he needed to get fitted for a custom-built wheelchair which he drives
by breaking light beams mounted precisely where his fingers dangle, propelling
him, slackly cradled in his chair, anywhere he wishes. He discovered an adaptive technology that
mounts below his computer monitor and tracks his pupil, functioning as a computer
mouse. The world became his, via the internet, which he uses to take
free courses from Ivy League schools on ItunesU while you and I are chuckling
at memes of cats.
With
these tools and a nurse constantly by his side he went to college , got a
biology degree then a master’s certificate in technical writing, then wanted
more and got another master’s certificate in website design - with only his
eyes. Now he builds presentations for fundraising and curriculum for nurses,
working on his computer 12 – plus hours each day - with his eyes. He trundles around the halls of his state
legislature with a laptop and a PowerPoint presentation calmly requesting them
to stop cutting Medicaid so he can continue to live. The slick politicians
jiggle nervously and stare at the wall and tell him they’ll look into it. He breathes a little bit, wiggles a couple
fingers, rolls his expressive eyes and keeps driving - keeps driving -keeps
driving.
His
story is jaw-dropping, but it’s his drive and cheerfulness that are shaming to
us, who can shoo flies and wipe bottoms and swallow our spit and eat and drink
and breathe and curse our weak eyes. I
know this guy, but I don’t really know him; I can’t even begin to fathom
what kind of perseverance and inner strength it takes to pursue your vision
when everything is stripped from you; everything, save your eyes.
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