Ready to Roll: Notes on Mobility Aids (part 1)

“Every family should have a wheelchair,” Alan says. That’s what he says too about the walker, crutches, and toilet seat riser left over from medical procedures of yore. He stores all these in his basement closet. “Just in case.” 

My condo does not have a basement, I argue, let alone one with its own closet. Where am I going to park a wheelchair? I also argue that…

1. A wheelchair only takes care of one small subset of the Catalog of Miscellaneous Exertions, and 
2. Bigger issues for me are cognitive tasks, like the focus and problem-solving required for work, or the quick decisions needed to survive Beltway traffic, and 
3. The sensory overwhelm is also one that saps me far more quickly than even I realize, and 
4. I can usually walk around places. Slowly, yes, and with lots of rest breaks, but I can still walk. My PEM is only somewhat triggered by mild physical exertion. 

Let’s face it. Admitting that I’m approaching Wheelchair Junction is scary. It feels like an off-ramp with no return. Alan, my friend and companion, is not swayed by my arguments. And that’s fair. He has witnessed my crashes in real time. All kinds of formerly enjoyable activities are inaccessible to me because they require a person to be on their feet for extended periods. Like all the weird and wonderful free museum exhibits in the DC area just a short skip from my house. They may as well be on the moon. 

He’s right of course. About the closet full of mobility aids and about the wheelchair too. We live in flesh, not Kevlar. Bodies get hurt, they weaken. Sometimes we need a little help. So I concede and he takes the plunge. He brings the new chair to my house so we can test-drive it indoors. We take turns spinning in circles in the living room. If I don’t want to use it, he tells me, fine. But he’s keeping it. “Just in case.”

The next weekend hands us one of those sun-bright frigid winter days that prods you to get out into it. Alan promises he’ll take care of everything. Pack the chair, pick me up, drive both ways. Do all the pushing and go at the pace I choose. My resistance puts on a good show but we both know that my internalized ableism is no match for my compulsion to be in the world. 

Much discussion about options ensues. Having me poop out in the Rothko room of the National Gallery would not bode well for future outings so we keep it close to home. The local town center should set us up for a win. We head out for wide sidewalks and gaggles of pedestrians.

Alan snags a street spot. I haven’t applied for a handicapped decal yet, and it is nice not to have to deal with a parking garage. He has me wait in the car. For a while. “Should have practiced setting it up,” he hollers, fighting the wind to keep it from carrying the chair down the hill. He locks the brakes and he helps me over. On his way, he grabs a blanket from the trunk. 

“What’s that for?” I push it away. “It’s not that cold.” A flash of the bundled bodies lined up in wheelchairs on the porch of my great-grandma’s nursing home. My recoil is immediate and powerful. I’m embarrassed by my reaction, by the ageism now joining the party. 

I’m trying to roll with everything but this is a lot of feelings for a Sunday. Maybe we can just take it one enormous changing-identity step at a time? 

“Sit on it then. It’ll be good to have it,” he says. “Just in case.” So I stuff the blanket under my butt and off we go.

While I’ve been to this place dozens of times, never have I seen it from this reduced vantage point. The faces of kids show up more clearly. Different items populate window displays. True to his word, Alan lets me set the direction and the pace. 

And at every corner, we anticipate a game of crosswalk chicken. Irritated drivers piled up waiting to get through, pedestrians trying to decide if they can jump in on the tail of a crowd that’s already halfway through. It’s not really dangerous – no one here drives more than about 10 MPH – but my condition has slowed my reflexes and dulled my sense of timing. I’m glad someone else is here to get me across. 

What we find, though, is that the wheelchair is a giant time-out clock. Everyone stops. Drivers brake well back from the crosswalk. Pedestrians get out of the way. We mosey through without one nudge or foul expression. “They’re all being so polite,” Alan marvels. 

Maybe the patience of our fellow humans shouldn’t surprise me. But it does. As I become more entangled in the catastrophic clusterf*** of barriers facing disabled people, and as we watch new holes being torn every day in an already frayed safety net, some soul-deep misgivings take root. Do people even want us to exist? Because it seems like they’re actually out to exterminate us. It’s nice to receive this small, real-world reminder that our neighbors care.

Three blocks in, I point to a pastry shop. If memory serves, a divine selection of gluten-free treats should be nestled in among the other goodies. We linger outside and debate for a minute but it’s too cold for ambivalence so we just go for it.

The narrow cafe is jammed. Scenes like this overwhelm me, all the noise, choices, and throngs of humans to maneuver around. My sensory alarm bells start clanging as soon as we push through the door. We snag a spot by a wall next to an empty table and I slow my breathing. Alan takes my order and heads off. It’s like having my very own Minister of Commerce and Communication. And me, safely tucked into a space where no one is jostling me and there is no line to worry about. My nervous system chills out. 

After our treats (mine has a coconut macaroon hiding at the center of a dark chocolate mousse cake, SO worth it) we roll back out. The afternoon light is fading and the wind has turned icy. Walking is, of course, one easy way to generate heat. There’s not so much of that here in the chair. I pull the blanket out from under my butt and tuck it around my lap. Alan bites his tongue, which I appreciate almost as much as an extra layer.

Our whole excursion is only about six blocks and one hour long. Even with my ME/CFS, it  probably would not have been too physically taxing on foot. There are plenty of places to sit. Short distances between things. Lots of wide, easy walkways and ramps and elevators. But what this illness shows me over and over again is that exertion contains multitudes. 

You know those gazillion invisible assessments that you do unconsciously every day? If you are well, probably the answer is no, you don’t know. You are not looking at the next distance to cross, gauging if you can handle it. Or considering where the closest bench is, and if your body will tolerate staying on it for 30 or 45 minutes. If you walk to the store one block on, will you actually be able to peruse the shelves? Will there be anything to lean on? Or will that extra block make you so dizzy you may not make it back to the car? 

When you have ME/CFS, every little calculation, every formerly miniscule adjustment, takes conscious, measurable effort. Sometimes Herculean effort. All these small exertions add up. Death by a thousand cuts. 

Being in the wheelchair removes many of these micro-decisions that exacerbate fatigue. Which leaves a smidge more energy for just straight-up enjoyment.

When Alan and I make it back to the car (me happily holding the grocery bag on my lap, no exertion required!) I am a dead battery. But I’m not in pain, not shivering from cold and fatigue. Not distressed and crashing as I would usually be after an hour out in the world. Being exempted from the physical effort of walking through the shopping center and maneuvering around people left more juice for the other forms of exertion required. 

When I tell an old friend who has MS about my first wheelchair romp, she describes what she has (or we have, she gently reminds me) as “dynamic disabilities.” It is not a fixed trajectory, not a single exit to Wheelchair Junction with no return ticket. Keeping the closet stocked with  mobility aids is no different than having an assortment of tools on hand. It keeps possibilities open.

So I guess the chair stays. Sort of. I’m not quite ready for it to live at my place where there is no closet to conceal it and all it has to say. Alan, bless his heart, is storing it until the next adventure. Not in the basement though. It’s parked by his front door, ready to roll. Just in case.