Tag Archives: Disabilities

Courage at Twilight: Christmas in August

“Freeze them all!” Dad commanded. “They don’t belong on my body.”  Indeed, all the moles and tags and bumps offended his dignity and threatened his pride.  Kirk the PA said he would be happy to freeze Dad’s little lesions to the extend he could tolerate the pain.  “Freeze them all!” Dad repeated, grimacing at each squirt of the liquid nitrogen.  Thirty minutes later I wheeled Dad out of the dermatologist’s office with his chest, neck, face, and head boasting more thirty red polka dots.  Back at the car, he realized all the freezing and pain had triggered a bladder response, so back into the building we went to look for a bathroom, a building with no automatic doors for the disabled.  The men’s room at least was ostensibly wheelchair friendly, but we soon entered into pathetic gymnastics with doors and wheelchair and multi-point k-turns and misplaced grab bars—this bathroom might be legal, but it definitely was not wheelchair friendly, in fact it was wheelchair nearly-impossible.  We barely managed, as a team.  Having visited the restroom, the drive home was much more comfortable, despite his painful polka dots.  Two incognito spots had hidden in the wrinkles above his mouth, one on each side of his face, symmetrical.  “A little poke,” lied the friendly Kirk, injecting lidocaine in each spot ahead of the biopsy.  Dad fretted immediately about the possibility of two surgeries on his face, above his lips, a horrifying prospect.  I could not help thinking briefly of the Joker, but banished the thought unuttered.  With dinner Dad had Coke Zero in one glass and apple juice in another, and drank neither.  I cannot get him to drink during the day, and I am tempted to remonstrate.  But then I remember that each trip to the bathroom is a life-or-death struggle, and, as he tells me frequently, his paralysis worsens every day.  No wonder he avoids hydrating.  On the front porch lay a package decorated in floral wrapping.  I had ordered the needlepoints in November last year for Mom’s Christmas gift, but they never came.  I entered into the longest email string of my life: can you check on my order? one item is out of stock, we can’t order the other item in, no that replacement choice is also out of stock, can you check my order? yes we have that one, they will be mailed soon, can you check my order? so sorry, we’ll get right on it, can you check my order? and they never came.  Exasperated, I mailed a letter to the owner about my terrible customer service experience, adding that they had my money, inviting them to make things right, and then I let the issue go, certain I would never see my order.  But today, August 28, against the odds, the package finally came: “Merry Christmas, Mom!” I finally got to say.

Rita

Bill and Rita Stenner knew I loved small boat sailing.  I learned to sail small cat boats as a Boy Scout at Camp Liahona on Lake Seneca in up-state New York.  Of all my 35 Boy Scout merit badges, small boat sailing was my favorite.  Bill invited me to sail with him and Rita in his 19-foot sloop several times over several summers.  We put in at Atlantic Highlands, New Jersey, and tacked toward the Hudson Bay, with the Twin Towers shooting above the barely-visible land of Manhattan Island.  Rita suffered from crippling rheumatoid arthritis, and sat crumpled and twisted in a wheelchair.  But floating in the water behind the cruising sloop freed her from her confinement.  She never complained in the chair, but she exulted from within the cool salt water as I steered and called “coming about!”  This poem, “Rita,” I wrote some 30 years later in reverent memory of these good, kind, quiet people.  Thanks Rita and Bill.  (See the Rabbit Lane: Memoir page of this blog, Chapter 4: Desert Lighthouse post, for reference to sailing with Bill and Rita.)

RITA

The old man was kind to me,
though I offered nothing but my youthful company,
which I made pleasant, for my gratitude,
on those summer days.

How we sailed!

From Sandy Hook toward Hudson’s kills,
Twin Towers rising like brother beacons
beckoning us to tack their way,
I on the rudder,
Bill on the main sheet and jib.

Oh—how we sailed!

He tethered his wife,
a cheerful lump of rheumatoid flesh,
and tossed her offhandedly overboard,
whence she giggled and squealed
for the cool and the salt, the jostling wake,
for her release from the chair.

Sailing in the salt breeze!

Ponderous thunderheads darkened abruptly,
and we hauled her in
like a troll-caught crab
and fled the flashes, knowing
how tall and conductive was the metal mast
and how helpless we would be
on the water.