I have a feeding tube sticking out of my mid-section. It might
be dinner, but it is not a dinner table topic. I only bring this up
because this device requires a bit of care. And like everything else
in my life, this chore falls Allison’s way.
I’m merely a passenger on the ALS excursion. Allison is the pilot,
ground crew, and flight attendant. It is not what she signed up
for back in ‘05. Imagine a wedding officiant who saw the future
with perfect clarity. “Do you, Allison, promise to love, cherish,
and obey, in sickness and in health… and by the way, deal with a
feeding tube?” Woulda been a short ceremony. But the keg of
Sam Adams would have been all mine.
And trust me, the feeding tube is easy when compared to other
Bedtime includes: meds inserted into open mouth and taken
with thickened liquids; squeezing out toothpaste and measuring
mouthwash; cleaning out the resulting messy sink; placing
pillow “just so” behind my head; setting the pillow for my left
arm (don’t ask); rearranging my shirt collar; cushioning my feet
with sheepskin pads (once again, don’t ask); folding a down
comforter in half and wrapping me burrito style; plugging in my
power chair charger; and sealing the deal with a heartfelt
good-night kiss. At least once a week, something feels a bit
out-of-place. The reset button is pressed and the ritual is
repeated. Not a word of complaint. And another kiss.
That is just bedtime. The morning includes coffee-making,
breakfast, a snack for mid-day, feeding tube check, body wipe
down (there’s a pad for that), clothes changing (imagine a
squirming, helpless, 190 lb. infant), a shave, and a heartfelt kiss.
Then out the door, bound for work.
A couple of weeks ago, I committed myself to a “5-Ask Friday”. I
retired that plan about five minutes after Allison arose. There is a
tsunami of small requests in addition to the daily routines. I drop
things. And spill things. I choke on food, snot bubbles from my
nose, my shoulder itches, and my phone dies. It all calls for
attention. I am not as patient as I should be.
I can still feed myself. Somewhat. Allison feigns indifference
when I cough while eating. She pretends not to notice the spray
of food, or the galaxy of debris on my bib. The dogs notice and
post up expectedly, like a fifth wheel on my power chair. They
will be disappointed when all meals are tube fed. I will too when
that day comes. Food has been an enduring pleasure as other
enjoyments have fallen away. There is no zest to Nestle Nutrene.
It is just nourishment.
My power chair is a menacing beast. Just imagine a Skid-Steer
Bobcat without the bucket. Allison does not comment upon the
scuff marks, splintered woodwork, and broken door latches. For
now, I am self-propelled. One less burden.
We have a Ford Transit van with a wheelchair lift. It is a fussy
piece of gear. Allison is the lift whisperer. Once I wheel into
place, she stows the lift and hooks the four corners of the chair
to retracting straps. They hold me in place around curves or
during sudden braking. The process is reversed when we go to
the grocery store, the pharmacy, the liquor store…
During our motoring trips I offer many helpful driving tips. It
would be tempting for Allison to “forget” to clip me in at some
point. When I go into backseat driving mode, she could stand on
the brakes and turn me into rocket-man. For the price of a
windshield she could drive in peace. Who could blame her?
Allison and I have only one point of contention. (Two, if you
count Thai Fish Sauce.) That is optimal room temperature. She
prefers 55 degrees. Anything more causes her to resemble a mid-July parishioner in an Alabama Baptist church. Her favorite
show is found on the National Geographic Channel. It is “Life
I enjoy a more civilized 72 degrees. Even at that setting, blankets
and sheepskins keep me warm. Allison wraps me in a draft-proof
cocoon during evenings in front of the TV. It is relaxation time
for me while Allison multi-tasks with a few more chores. If I am
lucky, she is folding laundry. And if I am straight-flush lucky,
she is drying sheets and towels. They arrive in my lap hot out of
the dryer, sealed with a kiss.
It must be love.