Looking At The Ceiling

This hospital bed would be comfortable under different circumstances – maybe in my bedroom, watching television; or, maybe in a Las Vegas hotel room, overlooking the Strip; or, even parked in my office, in front of my computer, next to the phone. But, here I am on the fifth floor, in the cardiac unit of a hospital, staring at the stained ceiling tiles, listening to squeaky I.V. racks and E.K.G. monitors roll up and down the hall, reminding me of my own monitors, stuck in my arms, adhered to my chest. And, I just want to go home, and to work, back to normality, my own schedule, and family, and security. But, here I am on the fifth floor, in the cardiac unit of a hospital, staring at the stained ceiling tiles, wondering how they became stained – maybe a leaky water pipe overhead, servicing the sixth floor?

There’s a knock on the door of my private room, and I wonder if it’s good news or bad, maybe it’s solid food or more blood-thinning shots in my stomach?

“Come in,” I say.

“Mr. Smith,” the on-call doctor, Madeira, says in the most graveled voice I’ve ever heard, walking in with his clipboard, wearing a yellow tattersall oxford shirt that I recognize from L.L. Bean’s fall line some years ago, a shirt that I almost bought during my first semester working at the college, but couldn’t afford. “How are you?”

“I’ve been better,” I say, rolling over slightly, toward where he is on my left bedside. “How are my test results?”

“For whatever reason, your body isn’t producing enough blood,” he says, placing his clipboard on the counter in my room. “Your red blood cell count is exceptionally low.”

“I know, that’s why I’m here, Doc,” I say. “Delight me with something new.”

“Yes,” he says with a pained smile, as if hardly baring my sarcasm, standing beside my bed, an arms reach away, his hands crossed in front of his khakis slacks like an alter boy.

“What are all of the tests showing?” I ask. “You’ve taken nine vials of blood, performed an angiogram, a colonoscopy, a stress test, and had me drink mud while scanned by some nuclear machine – you must have at least found a button that I swallowed when I was two?”

“Well, yes,” he says again with a smile, glancing down at his shoes. “I’d like to give you blood.”

“Do you know anything more than you did yesterday?” I ask.

“Well, we’re still waiting for more results,” he says, reaching for the pager on his belt. “Excuse me, I need to use your phone.”

He walks around my bed, to the phone on my nightstand, and calls someone, explaining that it’s alright for a given patient to stop therapy. Then, he walks back around my bed, to his previous place, resuming his posture of his hands crossed in front of him.

“OK,” he says with that damn smile. “I’d like to give you blood.”

“We discussed this last night – can you tell me in no uncertain terms that it’s vital that I receive blood?” I ask.

“It’s in your best interest,” he says

“Look, again, unless you can assure me that it’s vital, then I’m not willing to take the risks of receiving blood,” I say.

“OK,” he says, now without the smile, impressing me that I’m a difficult patient. “You also refused your antispasmodic – is that correct?”

“Yes,” I reply.

“And, why is that?” he asks.

“I don’t take antispasmodics,” I reply.

“Why?” he asks.

“I don’t need them,” I reply.

“And, why is that?” he asks.

“I’m comfortable living with myself – I don’t need to alter my body or mind,” I say.

“Have you ever taken medication for your spasms?” he asks.

“As a child, and it made me a doped-up mess,” I say.

“Well, medication has changed in thirty years,” he says. “There are medications that can help you.”

“Help me with what?” I ask.

“Well, I see that you’re amazing adept at living with your condition,” he says, pointing from my bed to my manual chair, having seen me transfer myself last night. “But, medications could make you more comfortable, allow your legs to relax straight, for example.”

“The reason why my legs are pulled up toward my chest like this is because I am comfortable – it’s my body, in its natural state, whether or not it makes you comfortable,” I say.

“But, you take medication for your acid reflux – so you pick and choose your treatments,” he says.

“Acid reflux is a medical issue, my cerebral palsy isn’t,” I reply.

“And, how’s that?” he asks.

“My cerebral palsy is static, it doesn’t get better, or worse, and doesn’t require treatment – it’s like any other permanent physical characteristic, it just is,” I say.

“OK,” he says. “I’ll see you this evening.”

He leaves the room, and I try to relax, taking a deep breath, feeling the pinch of my I.V. sandwiched between my left forearm and thigh. But, then there’s a knock on my door.

“I forgot my clipboard,” the doctor says, walking by my bed, toward the counter.

“Robert, I notice a tracheotomy scar on your throat,” I say, making eye contact. “What’s that story?”

He stops in his tracks, crossing his hands in front of him, paused.

“Yes, when I was thirteen, I had a lung collapse, and removed, and had a trach for nine years,” he explains.

“I appreciate that,” I said.

He nods, picks up his clipboard, and heads for the door.

“So, you understand,” I say.

“No,” he says, glancing back at me, closing the door behind him, leaving me to return to the ceiling tiles.

The Mathematics of Halloween When Your Dad Uses a Wheelchair

“I’ve got an awesome idea for trick-or-treating this year,” I say to my 9-year-old as I roll into our kitchen, home from work.

“What’s that?” she asks, always eager to talk about Halloween.

“We’re going to go get me a costume,” I say, taking off my jacket, putting it on an empty kitchen chair.

“Cool – what are you going to dress up as?” she asks, pulling out her chair, sitting at the dinner table.

“I don’t know,” I say, “but here’s the kicker: I’ll dress up in a costume, and when you go up to the doors trick-or-treating, you point to me and say, ‘My brother is in a wheelchair, and he needs candy, too.’”

“I can’t do that,” she says.

“Why not?” I ask, pulling up to my spot at the table.

“Because it’s wrong,” she says, smiling.

“You’re the kid knocking on doors, asking strangers for candy – now that’s wrong,” I say. “Didn’t your mother teach you not to take candy from strangers?”

She tilts her head and just glares at me.

“Come on, it’s brilliant,” I say. “If we dress me up, too, we can get the same amount of candy in half of the time, or twice as much candy in the same amount of time as last year – it’s a math thing. And, some people might feel bad for me, your poor brother in a wheelchair, and give us double dips of candy – we could get exponential amounts of candy then.”

“Mom, Daddy’s trying to get me to cheat on Halloween,” she tells my wife who’s standing by the counter, preparing dinner.

My wife walks over to the table, and sets down my plate. “Leave the kid alone, and eat your dinner,” my wife says, always annoyed by my antics.

“Fine, maybe I’ll just go trick-or-treating by myself,” I mumble, looking down at my dinner.

“Good luck getting up the stairs,” my daughter whispers across the table.

Secret Service

I’ve been through countless security screenings at airports, and this line looks a lot like those – only I’m outside, and going to meet the President.

Now, when I say I’m going to meet the President, I mean the President – the guy on the news every night, the one who lives in the big white house shown in every fourth-grader’s social study book, the leader of the Free World. And, frankly, I’m a little nervous. Typically, I can calm my nerves when giving a big speech or attending an important meeting by saying to myself, “I’ve done this before.” Plus, the whole spastic cerebral palsy thing makes for good camouflage to hide my nerves. However, I’ve never spoken with a president, and right about now, I wish I’d spoken with a pope, as that would offer some self affirmation, at least. But, I’ve never spoken to a president or a pope, so I’m pretty much on my own as I sit here in line, heading for the security screening, ready to make my way to meet the President.

As I move closer to the security check point, with just a few people in line ahead of me, I see that it’s essentially a pass-through tent, with a metal detector, an X-ray machine, and uniformed officers and Secret Service agents everywhere. Finally, I’m the next in line, and as I roll up, there’s a uniformed officer to my right, and a suited agent – ear piece and all – to my left.

“Good morning,“ the uniformed officer says, glancing down at my powerchair. “Just wait right here.”

The officer looks above my head, to the agent on my left, and says, “Get the dogs.”

Dogs? Get the dogs? Does he mean German shepherds trained to sniff and attack? Oh, great, on among the biggest days of my career, I’m going to be turned into a cerebral-palsied chew toy for Tank and Vito, two police dogs who only respond to German commands and weigh more than I do. One misplaced muscle spasm in my legs, and I go from well-dressed to dismembered. Maybe if I just repeat, “I’m a rag doll,” over and over again, as my physical therapist taught me when I was a child, I can sit still long enough not to be maimed, just like when getting a haircut or going to the dentist or trying to pretend that I’m asleep so my wife won’t bother me with her chit chat in bed.

“If you call out the dogs, we have to take him out of the chair for liability reasons,” the agent replies to the officer.

Did I vote democratic lines in one too many elections? Dogs? Taking me out of my wheelchair? I just want to speak with the President – after all, a wrestling match in a suit, on wet grass, with two German shepherds, wasn’t mentioned anywhere on the invitation.

“Can you get out of your chair?” the agent asks.

Ah, now he’s heading in a more positive direction, and I’m careful to answer, knowing that there’s a right answer, and a wrong answer.

“No, I can’t,” I say, getting them on a technicality, where if I can’t get out of my powerchair, they can’t call out the dogs, which then can’t turn my Lands End dress trousers into tattered, grass-stained tug-of-war rags.

“Do you mind if I check you?” the officer asks.

“Please do,” I say.

He checks my powerchair thoroughly, pats me down, and instructs me through the metal detector, lined by an exceptional number of security personnel. I roll through, barely fitting through the detector, my powerchair triggering the alarm, and continue on, ten feet or so past it, where I look back, thinking I’m all clear – shoes on, no dog bites or grass stains – and I wait for others in my group behind me, still going through security.

Directly in front of me is the quintessential Secret Service agent – six-foot-something, black suit, ear piece, standing with legs spread and hands folded. And, he looks me right in my eyes, expressionless. “Hi there,” I say casually, smiling.

His eyes slowly move up from mine, notably looking to someone behind me. “Search him,” he simply says without moving a muscle.

A finger taps my shoulder, and it’s another uniformed officer. “I have to check you, sir,” he says. “Did the dogs already search you?”

There’s a right and a wrong answer to that question, too, and I just think to myself, “I’m a rag doll.”

Fight With A Garbage Can

I’m not proud of it, but I have a confession to make:  I got in a fight with a garbage can.   

 

It was garbage pick-up day, and as a surfed the sidewalk in my powerchair on my way home from work, I went around a garbage can on its side, blocking much of my path.

 

Thump, thump, thump.

 

 I look down the side of my powerchair, and the garbage can is somehow stuck on my powerchair, my drive wheel in its opening as if specially fitted.

 

I spin left, and the garbage can turns with me.  I spin right, and the garbage can follows.  I use my one hand to push away the garbage hand, while operating my powerchair with my other hand, and the spinning garbage can about rips my hand off as it continues rolling with my wheel.

 

“Alright, you piece of garbage,” I yell at the can, “let’s go for a little ride.”

 

I shoot out onto the empty street, the garbage can’s handles thumping in cadence as they hit the ground in rotation.  I spin crazy doughnuts, and the garbage can stays on.  I make reverse U-turns, crazy forward S-turns, and the garbage can still maintains its seeming suction to my wheel.  I slam the garbage can off a curb a few times, trying to trash the trash can, smashing the bottom section into its own eccentric shape – all to no avail, with it remaining an unforgiving appendage of my powerchair.

 

So, I head home.  I cruise down the street, full throttle, garbage can jetting from my side, beating like a drum as the handles bounce off the asphalt at an 8.5mph rotation.  I don’t know how I’m getting in my house, like a dog with a stick in its mouth too wide for the doorway, but I can’t spend all evening zigzagging down the street like pinball, trying to shake the garbage can off of me.

 

Two blocks into my high-speed pace, the garbage can finally gives up, flying off of my wheel, rolling beside me for a few feet, then spinning off to the side.  I turn my powerchair around, get a good, running start, and slam the garbage can with the front of my powerchair, punting it onto the sidewalk.

 

“I hope you never find your way back home, you rotten piece of garbage,” I yell

 

“Are you OK?” a woman asks from a porch, startling me.

 

“Yea – but that stinking trash can might need some help,” I say, spinning around, heading home.

Tap, Turn, And Roll

“You were more fun to play with when you were into Barbie dolls,” I tell my daughter as we sit at our kitchen table, reading the directions to a board game that perplexes the heck out of me. “This game makes no sense – place the card on a square, tap it, then turn it, then roll the dice, and whoever rolls the highest number wins. What kind of game is that?”

“It’s a fun game,” my daughter says, setting up the board.

“When I was a kid, we played checkers – that’s a game that makes sense – and the smart kids played backgammon,” I say, pretending to continue reading the directions, but more tuned toward making up rules as we go along.

“Did you play backgammon?” she asks.

“Sort of,” I say.

“So you were just a little smart,” she says, smiling.

“Oh yeah, let’s see how smart you are – show me how to play this crazy game,” I reply, giving up on the directions.

She places a card on a square, taps it, turns it, then rolls her dice, raking a 9. She then rolls the dice for me, ending up with a 6. “I win!” she says, adding a card to her winner’s square.

We move through another round of tapping, turning, and rolling – and she wins again. “This is rigged,” I say. “Because you’re rolling the dice for both of us, you’re somehow cheating.”

“Actually, because you can’t roll dice real good, and I have to do it for you, it’s not cheating,” she says, defeating my claim with a technicality.

“Because I need you to pour me orange juice, does that mean you can poison it?” I ask.

“Maybe,” she says tapping, turning, and rolling, defeating me further.

“Can’t we play checkers?” I ask.

“Sure, I love checkers,” she says.

“Wait – you always beat me at checkers, too, right?” I ask.

“Yep,” she says.

“Forget checkers, then,” I say. “Can’t we play some sort of wheelchair game – I’d be great at that.”

“OK,” she says. “What are manual wheelchairs made from?”

“Aluminum,” I say.

“You win,” she says. “Now back to my game.”

“Alright, let’s finish your game,” I say. “And, by the way, you’re not allowed near my orange juice anymore.”

The Wheelchair Unconditional

Every so often, someone comments to me that my work must be harrowing and disheartening. After all, wheelchairs signify the inevitable fact that anyone who needs one has a profound disability, stemming from birth or resulting from a life-changing injury, disease, or illness – that is, exclusively resulting from tragedy, as many would label such circumstances.

Surely, I encounter very difficult life stories everyday, where a wheelchair is a manifestation of a circumstance – disability – that no one wishes to experience or witness upon someone else. It’s impossible to learn the stories that I’ve learned over the years, and not have disheartening moments, from mothers paralyzed by drunk drivers, to children with head injuries caused by parental abuse, to medical doctors ravaged by the very diseases that they specialized in toward hopefully curing others. As a thinking, feeling person, I certainly can’t view these circumstances without a sense of empathy and despair, wondering how good people are taken down such bleak paths?

Yet, among the bleakest paths in life do lead to me and others in the wheelchair industry – or, more literally, a wheelchair – and, from my perspective, it’s at that juncture where an unexpected twist occurs in the road, an unforeseen but promising destination.

Still, the road leading to that destination isn’t a direct route. No one intrinsically wants to have to rely on a wheelchair for mobility. At best, a wheelchair is a device that many learn to value as needed in their lives; and, at worst, it’s a device that’s forever resented by some. However, the reality is, our emotional outlooks truly don’t reflect the inherent nature of a wheelchair when it appears on our horizons: A wheelchair is among the purest forms of liberation that ever enters our lives.

Indeed, we can bring all kinds of emotional and mental baggage to our wheelchairs, lamenting about what we used to be able to do, what we’ve lost, and how we’ve lost it. Yet, very little of it has anything to do with a wheelchair, itself. It’s at this point where my inspiration and passion for wheelchairs defines itself. A wheelchair doesn’t care where you’ve been or why you’re here – it just wants to move you forward in life. From the moment you sit in a wheelchair, its sole purpose is to mobilize you – that’s a powerful, irreplaceable tool.

When I work with those needing wheelchairs, many of their stories are profound. However, as much as I recognize and empathize with the struggles many face, I simply cannot view anyone’s receiving a wheelchair as anything but among the most positive events that he or she will ever experience – I know from my own life that a wheelchair will open up his or her world, even during among the most restrictive times in life.

Now, it’s an especial pleasure whenever a particular user shares my enthusiasm toward his or her new wheelchair, but it’s understandable when others do not. Some users will tell me for as long as they live that receiving a wheelchair was the worst day of their lives. And, many users have outlooks in-between, shifting over time from a view of resentment, to one of value toward their wheelchairs. Nevertheless, no matter what one’s outlook, I am like the wheelchair, itself, merely glad to assist toward enhanced mobility, where I’m most often as thrilled by the process as if receiving my own wheelchair, inspired by the fact that I know how a wheelchair unconditionally changes every person’s life for the better. From rolling across one’s home, to across a graduation stage, a wheelchair always fosters liberation – and it’s a privilege to witness the process.

In this way, the disheartening stories of disabilities that I hear inevitably take a sidebar to among my most passionate, inspired life truths: A wheelchair isn’t about what’s lost; it’s about what’s gained.

Cross-over Mobility

I was recently talking mobility technology with Rafael Iberra, legendary world-class wheelchair racer, who’s now a manager for one of the country’s more esteemed providers. There we sat in his Atlanta office – Rafy, a big, buffed guy with paraplegia, and me, a slender, spastic guy with cerebral palsy. We are two individuals whom, within the medical model, one might place at opposite ends of the disability and mobility spectrum. Yet, in reality, as Rafy and I discussed – both sitting in high-end titanium manual wheelchairs – stereotyped prescriptions of mobility technology based on classifications of disability don’t apply in the real world, as each user’s abilities, needs, and lifestyle are the real gauge by which mobility technology should be selected.

Up until as recently as a decade ago, it was commonplace for rehabilitation facilities to follow blanketing rules for prescribing mobility technology – that is, quadriplegics were prescribed powerchairs, and paraplegics were prescribed manual wheelchairs, period. It didn’t matter that maybe, as a quad, you had good use of your upper arms, and that you would be more comfortable with self-propulsion, better fitting a manual wheelchair than a powerchair. Nor did it matter that if you were a para, with shoulder problems, and lived in a very physically demanding environment like San Francisco, requiring long commutes via public transportation and sidewalk travel, you’d be better suited with a powerchair than a manual wheelchair. Clients were often merely handed mobility technology based on medically-defined classifications rather than an understanding of individual needs.

This ideology extended itself into therapy centers where, as a child, I saw myself and my friends with extremity-affecting disabilities directed toward mobility technology based almost entirely on upper-lower-extremity medical classifications – the children with spinal bifida received manual wheelchairs and the children with muscular dystrophy received powerchairs. In fact, till this day, the prescriptive rules for insurer funding of mobility technology is still rooted within the model of prescribing mobility technology based more on medically-defined classification, and less on individual needs. And it’s within the ignoring of individual needs where the fallacy of defining mobility technology for specific disability occurs — the prescription of mobility technology isn’t a fixed equation, it’s a variable application.

Even more interesting to me beyond such an antiquated medical model, is the psychology, stigmas, and stereotypes that it has spawned, aspects that profoundly influenced my own self image. As a very young child, I was fortunate to receive a powerchair. Initially, a powerchair provided me with great liberation, permitting mobility within the world at large, and fostered overall personal growth that I couldn’t physically achieve in a manual wheelchair. However, as I reached adolescence, I sought greater independence, desiring to define my boundaries as most children my age. Growing up with a disability made mobility – specifically, wheelchair technology – part of who I was, and in that way, compelled me to push my limits in that arena just as other kids may pursue sports or peer groups or fashion trends – again, testing boundaries toward self-exploration and definition. And, so for me, I chose to explore my abilities to not only use powerchairs, but also manual wheelchairs – that is, seemingly crossing over the boundaries of the era’s mobility protocol.

What surprised me most through my process of mobility exploration wasn’t the physical difficulties of learning to use a manual chair, but the stereotyped reactions I received from professionals and laymen alike toward my wishing to use a manual wheelchair. People were genuinely baffled by someone of my disability level sitting in a ultralightweight manual wheelchair – after all, why would a teenager with sever cerebral palsy want to exhaust himself using a Quickie when he had an E&J Power Premier charged up and ready to roll? The fact was, I used and loved my powerchair, but it didn’t give me the daily exercise I needed to further my physical abilities, it didn’t fit in my friends’ cars, and it wasn’t nearly as fun to tinker with as my high-performance manual wheelchair – divided mobility, powered and manual, allowed me to live a far richer life than being pigeon-holed into only one form of mobility. Nevertheless, despite the justifications I felt obliged to give toward my use of cross-over mobility, many people purely seemed aghast at my using a manual wheelchair, just as they were by a parapelegic using a powerchair.

Today, 21-years after I decided to accept both powered and manual mobility in my life, I am convinced it was among the most meaningful decisions that I ever made – cross-over mobility technology allows me to live the most active, healthy, convient life. Nevertheless, every once in a while, I still encounter stigmas and stereotyping toward those with more profound disabilities using manual wheelchairs, and those with less-involved disabilities using powerchairs. As an example, this notion recently came up while I discussed high-performance manual wheelchair design for those with quadriplegia and other four-extremity disabilities, and a gentleman commented that “any quadriplegic whom uses a manual wheelchair isn’t really a quad” – a comment as entirely absurd and stereotyped as I’ve ever heard. While the comment certainly wasn’t based in reality – there’re many quadriplegics whom use manual wheelchairs – it was based in an outdated, ignorant mode of mobility prescription based on medical definition, not individual ability and wishes. Fortunately, such views are less frequent as the age of disability awareness continues unfolding in our lifetime, but unfortunately, such stereotyping and stigmas still exist.

Despite the lingering old ideology toward prescribing mobility technology, I am inspired that, in many ways, the medical model has changed for the better, looking at mobility technology more on an individual basis than as blanket prescription. These changes are most seen through technology offerings like quad quick-release axles and projection pushrims on the sportiest ultralight manual wheelchairs, as well as light-rehab powerchairs featuring captain’s seats and one-piece footplates for users with less-involved disabilities. Indeed, the age of cross-over mobility technology is here.

Of course, it’s ultimately up to each of us on an individual basis to determine which forms of mobility technology are most fitting for our needs and lifestyles. For some, the most meaningful mobility might be manual wheelchairs; for others, the most meaningful mobility might be powerchairs; and, for still others, the right mobility might be a combination of manual wheelchairs and powerchairs – defined by lifestyle, not merely disability. To twist a cliché, cross-over mobility technology isn’t about what you have; rather, cross-over mobility technology is about who you are.