An All-American Fourth of July

Craig Hospital, in Englewood, Colo., is a spinal cord injury rehabilitation facility, so there’s nothing unusual about seeing people using wheelchairs around the neighborhood. But on this early evening, their meanderings take on a discernible pattern. Wheelers, many with helpers pushing, are crossing the streets, lining the sidewalks. The movement is away from the bright-hot streets into the cool shadows of a seven-tier parking garage.

From a distance it’s like approaching a parade route, loud but distant. Somebody has set up a boombox and a microphone and some memorably bad karaoki is happening. There’s a coming-to-meeting feeling in the air.

A single small elevator transports wheelers, only two at a time, to the rooftop of the garage. Traffic backs up until it becomes clear that there’s no need to wait–parking garages are favored skating playgrounds, and the ultimate wheelchair ramps.

It’s liberating. For the paras, this is a place to show the right stuff, to climb seven stories self-propelled. The power wheelers are in a promised land and two sip-and-puffers are racing each other to the roof.

On top, the rules change and the wheels rule. There are impressively fast power chairs, and sleek and minimalist sports chairs. There are vent-quads with enough tubing hanging off the back of their chairs to suck a septic tank dry. There are kids in strollers, people flat on gurneys.

The Kids
What are we celebrating here? For the people with new injuries, it’s a loaded question. You can see the anxiety in their faces, their body language. They’ve only recently survived car wrecks, shootings, rock climbing falls and dives into shallow water. They already know they can’t walk, and they know that not walking is only the tip of the spinal cord injury iceberg. They know that profound change has arrived, but don’t quite have a grip on its nature. They’re discovering the physical perils (breathing, bladder, bowel, spasticity, pain) and anticipating the social ones (relationships, sexuality, child rearing, school, work). Rehabilitation gives them a month or so to ignore the economic truths–that they’ve just joined the poorest minority in America is one of them–but these may be harder and more permanent than their injuries. Where will the money come from, now and forever? A few face managed care decisions that will send them to nursing homes for the rest of their lives.

For the newbies, it’s a celebration by default. They aren’t ready to go home yet, and their homes aren’t ready for them. But with all their bad luck hanging out–fresh surgical scars, shaved heads, skinny legs, pressure hose, legbags–they’re out to celebrate the unthinkable. Almost everybody wears a Captain America shirt of some kind.

The party atmosphere holds all the uncertainties of a second adolescence–a concurrent adolescence for the teenagers–so there’s a lot of acting out going on. The youngest are honing their supercrip behavior. Paras are showing off to quads, quads showing off to higher quads, all demonstrating their I’m-a-whole-person wellness. This is not just bravado; after five or six weeks of rehab, some are beginning to understand that their quality of life may not have died with their nerve conduction.

This is not a hard-drinking party. Enough paras and quads are injured in accidents following drinking, and enough others use their injury as justification to drink more, that Craig banned the stuff a few years back. There are coolers of watered-down Gatorade around, but you can’t even smoke tobacco here now. It’s a running joke–the good news is that you’re paralyzed for life and the bad news is that you have to quit smoking and drinking.

The Scene
It could be described as Felliniesque, but that would be inaccurate. It’s not bedlam, just diversity with the volume turned up. Some of the vent-quads periodically have their trachs suctioned. Other quads sit in reclining chairs with high headrests, feet high and head low. Since head injury is sometimes the handmaiden of spinal cord injury, there are some confused facial expressions, some titanic struggles to communicate. And some of the para-jocks are so robust you want to jam a broom stick in their spokes. There’s an unworthy impulse to define your own place in the spectrum, but it’s patently impossible. You’re just included.

Sam Andrews, head of Craig’s recreational therapy department, is leading the karaoki group. To sing in public demands a different kind of courage for people who have been so radically up-ended, but they do it. Some can’t hold a microphone without help, but they seem to get a palpable whiff of power as their amplified voices roll off the rooftop. When the fireworks start, the singers keep on singing. The non-singers emit oohs and squeals as tradition dictates.

Most of Craig’s on-duty staff is here. These are the people who change catheters, empty bowels, dress, feed and listen. They pushed half the people here up the ramp. Tonight, they’re in party mode and nobody cares who does what for whom. It’s amazing that those terrible intimacies can give way to a good time.

Spinal cord injury seldom happens to one person alone. It happens to entire families, and they’re here, too. They’re just as afraid as their injured relatives, just as reluctant to embrace a minority with so little evident panache. But they get the message: The thought of attending a party with 80 severely disabled people may be dismaying, but the actuality is rich and good. Who knew that disability has visited so many other families, that so many other people have experienced feeling so … tentative? They learn not to flinch when their own sons and daughters describe themselves as crips or gimps, and to see the pride, not the perversity. They learn–especially from the youngest children present–that disability is not inherently scary.

We’re a pretty all-American crowd.

The Survivors
Some of us here have been coming to Craig since before it opened in this location, and we’re wallowing in nostalgia. Why not? Whatever our politics, and however slow our country has been to cough up equal opportunity, we’re grateful that our society has kept us alive. Given all the outrage and the tribulation, all the advocacy that shouldn’t have been necessary, it’s been a wild and woolly ride and we know we’re not done yet.

For the most part, we’re a pretty beat-up bunch. Spinal cord injury and aging are contrary companions, and most of us are moving slowly if at all. We try to substitute dignity–earned by what, we wonder–for exuberance.

We gather in knots and reminisce about how it used to be at Craig. Five years ago, there would have been booze and the occasional hint of pot smoke. Fifteen years ago, both would have been openly abundant. Craig has seen its unrestrained days.

I remember those times. I’m one of the old ones. Like the others, I nurse wounds that won’t go away. For me, as for my peers, life is hard, but good. This is the first time I’ve been allowed up since a surgery six weeks ago. Now I can sit again and it’s glorious. I can breathe in the warm air, and it’s glorious. I can see the Front Range of the Rockies–can almost see my home in the foothills–and it’s glorious.

Steve Epstein, an attorney from Miami, still can’t sit. He comes to the party on a gurney tricked up with parade colors. A nurse has pushed him up all seven levels. Another is now perched on the edge of his pram, one hand holding a soft drink, the other gripping the IV stanchion. She has great legs. It could be a Fourth of July poster.

“We’re making history,” Epstein says. “In 20 years, people will look back and say that we were here.”

That’s all? That’s history?

“Were still here,” he says.

To the youngsters, the old guard is evidence that you can live this way. We don’t make it look easy, but we’re the living proof that it’s possible. Some of us do it very well.

It’s a glorious all-American Fourth of July.

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