Prairie Village resident Finn Bullers, who has muscular dystrophy and type-1 diabetes, took part last week in the United Spinal Association’s “Roll on Capitol Hill” — a national effort to lobby Congress for laws to improve the lives of the disabled. Bullers sent us an update after his first day in D.C. Below is his dispatch recalling the harrowing process of just getting to the event.
By Finn Bullers
WASHINGTON, D.C. — I should have known from the moment the alarm sounded that this was going to be a grand and perilous adventure to Capitol Hill.
The challenge? Haul my dead-weight carcass, one teenager, my nurse, a 300-pound Permobil C300, batteries, ventilator, suction machine and other “normal people” stuff from Kansas City to the Wardman Park Marriott in Arlington, Va. — with layovers — for a three-day conference.
The goal? Import Midwestern common sense to the halls of Capitol Hill in an ongoing struggle to remove barriers and fight for the health, independence and freedom of people with disabilities worldwide.
This is Day One — a glimpse into the life of a wheelchair user.
Sunday, June 16: 5:40 a.m., Kansas City International Airport: Bags packed. Transfer board juts out of suitcase — no problem, Delta says. Pre-printed boarding passes in hand, Delta wants $100 for four bags of medical stuff. No ADA way, I say. OK, says a mid-level manager. The charge is removed. 12-minute delay. Security frisk. Chemical swabs across my powerchair.
Positive hit trips flashing red light and alarm. Closed-door private screening and crotch pat. Oddly enough, I can seem to find no written record of a wheelchair unibomber or a Timothy McVeigh quad with enough fertilizer jammed inside aircraft aluminum wheelchair tubing to blow up anything larger than a balloon. Another delay — this time, 18 minutes. No. Bomb. Found.
Oops, we were sent to the wrong gate and separated from my nurse. We miss our flight. Rebooked 90 minutes later. Our luggage flies to our Atlanta connecting flight — without us. New gate. Security check, again — swab, pat and stern look from a humorless, never-missed-a-meal security guard.
“I need to see that,” he told me.
“What,” I said.
“That,” he said, finally pointing to my stomach. “I need to see your pouch.”
“Kind, sir,” I think to myself. “Surely you have mistaken me for a kangaroo.”
“That — is his stomach,” Karen Iverson, my incredulous nurse, exclaims, lifting up my shirt to reveal an emerging olive on a toothpick. But hey, at 6-foot, 150 pounds, I’m no bowlful of jelly — yet. I look to Karen, point to my belly and tell her, “Say hello to my little friend.”
On to Atlanta. Aisle chair barely fits between seats. Aisle arm rests scrape hard my coccyx on the transfer. Damn. Poor seat location introduces my knee to all carry-on luggage on the plane. We watch out the window as five men in orange vests bounce my Permobil C-300 down at least 30 steps to the underbelly of the plane.
Ka-thunk. Ka-thunk. Ka-thunk.
On board, the breathing machine battery emits its annoying beep, foreshadowing future frustration.
Touchdown D.C., claim baggage, off to Super Shuttle. And what begins as a confirmed-ahead-of-time, 20-minute wait for an ADA ride to the Marriott turns into a 4-hour and 45-minute debacle of delays, misinformation and malfeasance.
Are you serious?
The silver lining: We hook up at the Super Shuttle kiosk with Jim Pepac, the head of Permobil’s standing wheelchair division based in Nashville, and Kesha Pilot of Hot Springs, Ark., a 26-year-old receptionist and disability rights activist with a killer smile, a “rock on” attitude and a spinal cord injury.
Two hours later, the big blue shuttle folks still tell us: Only 20 minutes more. We shrug our shoulders in disbelief and stick together, eating beef jerky and trail mix Pepac provides to fuel our lagging spirits and energy levels. Note to self: Next time, pack plenty of protein in a carry-on bag.
By hour 3.5 a shuttle arrives. Kesha Pilot boards. So do I. We wait. And wait. It’s hot and claustrophobic. The van walls close in. The lift refuses to return to its upright position and simply won’t respond to quiet curses, hand cranks or swift kicks from steel-toed boots.
That’s it. We’re outta there.
Permobil’s Pepac keeps working his mojo. Super Shuttle calls competitor Red Top Taxi to do what they can’t — deliver us to the Marriott. Our reimbursement? We’re told to call 1-800-YOU-LOSE. File a complaint, they say, and we’ll get back to you “later.”
Via Red Top, Pilot, I and our entourage move in to the Marriott for a three-day “Roll on Capitol Hill.” We have a few real-life experiences to discuss with our Congressional leaders, but not before drinks and hors d’oeuvres on a Sunday night.
And not before an extra bit of drama in Room 5031.
The Trilogy ventilator that keeps me breathing beeps shrilly and in rapid succession. Its message: Dude, your batteries are dead and you’ve got about two minutes of internal power and then I’m going to bed. Lights out. The other three batteries we packed — which respiratory supply provider Sleepcair techs said each would last 3.5 hours per charge — we’re dead after less than two hours.
The next option? Plug in the vent, rendering me immobile — and missing the open bar and social connection to stories more compelling than mine. Still no cord. Plan B: Get security and find a PlayStation cord identical to the one I use for my breathing machine. But PlayStation is passé these days and the cords were thrown out months ago, hotel security tells us.
Less than a minute left.
Thirteen-year-old Christian, my eighth-grade, problem-solving son, makes a sudden move to his camera bag, grabs his charger and rudely yanks out the camera-charging cord.
I quickly check in with my spiritual muse — a broken-wing angel who long ago met with misfortune through no fault of her own and now watches over me in a most decidedly unorthodox fashion. But she is there. And she gets the job done.
Christian plugs one end of his camera cord into the headboard outlet, and the other end into the breathing machine. My angel descends. And Bingo, the green “good-to-go” light shines brighter than ever before. I take countless deep breaths and hug my son.
No self-deprecating humor just now to lighten the heavy mood. Silence fills the room as the breathing machine begins again its rhythmic pattern to force air into my muscular-dystrophy compromised lungs.
Note to self: Travel with a back-up ventilator, extra extension and vent cords. Don’t believe provider hyperbole. When they say, for example, “new” batteries, ensure that means “straight-from-the-factory” new and not just re-tread batteries yanked from used machines that are “new” to you. And don’t leave behind the precocious, problem-solving teen. What a young man.
In my case, nothing bonds father and son like a little life-and-death drama. Admittedly, a movie and a cheeseburger may accomplish the same goal.
At nightfall, recollections of a Danish lullaby my dead father would often recite to me fills my head:
“Let me think over all the deeds I have done today.
“Good deeds to do again. Bad deeds to forego and forget.
“And now I shall sleep and grow while I sleep.
“And tomorrow I shall be happy.”
Finn Bullers is a freelance writer/editor who lives in Prairie Village with his wife and two children. Contact him at email@example.com