(Carol Lefelt continues her ‘Chronic Fatigue Syndrome Chronicle series’ with a look at her love/hate relationship with her wheelchair)
After a month completely homebound, I’ve bit the bullet and ordered my first wheelchair. On the one hand, I’m excited about it because I am sick of being cooped up in my house, and just to be able to “walk” around the neighborhood with my fiance and to actually be a part of the world seems like a marvelous thing.
On the other hand, it’s difficult to think that I might need to incorporate this wheelchair into my identity. I hope it’s a temporary measure. I’m afraid, if we run into people we know, what they may think. Hell, I’m even afraid my doctors will believe in me less if I show up to appointments in a wheelchair. (“She’s bought a wheelchair this time. Munchausen, clearly.”) Eve789
Many cities now have cuts at the ends of each block, so that wheelchairs, baby strollers and skateboards can ease from the sidewalk down into the road without great ado. But these curb cuts have deteriorated; they are sometimes so uneven that my hands tense and automatically clutch the arms of my wheelchair as I prepare for another great wobble as Steve pushes me along – in New York, in New Orleans, in Austin, in port cities on a Carribean cruise, in a picturesque French town.
The sidewalks themselves have also crumbled with age. They are often broken, filled with holes and cracks and uneven sections caused by tree roots or shifting land. Often cobblestones, brick sidewalks or fancy paving stones enhance the quaint and historic atmosphere. All this means that I am severely bounced along, my kishkas (my Jewish intestines) flying up into my throat and my body twitching in an uncoordinated St. Vitus Dance. I hate it.
Steve does his best to avoid the worst hazards, but he can’t see ahead what I can, and so I face this dilemma: do I let him ram the wheelchair into the rut or protruding sidewalk, risking my being dumped out, or do I scream wildly in warning so that I appear an idiot to the world? I have to scream loudly, you see, because otherwise Steve will say, “What? What? I can’t hear you!” My dilemma is complicated because sometimes when I do shriek, he’ll get annoyed and insist, “I can see it. You don’t have to carry on.”
This is not fun.
“Hallelujah! It’s a miracle! “
Stores present another difficult scenario. If there’s a step up and it’s a small place, I’ll get up to walk around and we leave the wheelchair at the door. So far it hasn’t been stolen. But imagine the faces on passers-by as they see me rise; I feel like such a fraud. (Steve always threatens to shout, “Hallelujah! It’s a miracle!”) I want to tie my handicapped placard from my car around my neck to authenticate my wheelchair use.
If there’s easy access to the store, or if it’s too big for me to wander around on my own legs, then we take the wheelchair inside, and that’s a whole other trip. The aisles of most stores are not wide enough for wheelchair travel, and so we often find ourselves stuck, or else my wheel catches or bumps into something, which then goes tumbling to the floor. People all turn to stare, usually with pity. If it’s a shop owner or salesperson, the stare is more a mixture of pity and irritation.
If a food store is small, like our favorite, The Whole Earth Center in Princeton, I can shop on my own feet. But in a regular mega-supermarket, I put a plastic basket on my lap, and Steve pushes me up and down the aisles, dumping items into the basket and squeezing them into the small spaces around me until I’m peering through a large mound of cereals, bottled water, and toilet paper by the time we arrive at check-out.
When all of our eco-friendly shopping bags are filled, the clerk piles them on my lap in a careful balance. I can’t seem to find the equanimity to deal with this undignified helplessness and am grateful when Steve lifts the groceries from my lap into the car and I can slink out of the public eye into the passenger’s seat.
Our journeys also involve ramps and hills on various terrain. I worry when Steve grunts and groans on long climbs, though he insists, “Hey, I’m the guy who climbed Mt. Rainier and Mt. Kilamanjaro. I can do anything. Strong as bull.” Then on the descent, I can feel the wheelchair starting to run out of control, with Steve screaming, “PUT ON THE BRAKE! PUT ON THE BRAKE!”
Consider now the art museum. Most paintings are hung just above my line of vision; consequently, I quickly develop a sharp pain in the back of my neck. Steve has no idea which paintings I’d like to linger by. At first, I’ll give direction. “Wait; I’d like to stay longer,” or “I want to read what it says on that wall,” or “Please move me closer so I can see the name on that one.”
I hate my wheelchair. But I also love my wheelchair.
It’s not long, however, before I understand that his silence and the wheelchair jerks mean he’s starting to feel like my servant, and so I just sit back and let the wheelchair go wherever. Often it moves me away from the explanation I’d only half read or the sculpture I wanted to get a different view of.
Here’s the most awkward moment in a museum. Steve leaves me for a while as I’m staring at a wall in a sort-of crowded room, and someone not paying attention walks right in front of me and blocks my view. “Uh, excuse me,” I might say, and watch the person turn around and experience that moment of embarrassment and pity. “I am so, so sorry.” Or that person’s companion might push her out of the way and point to me.
Everyone, of course, looks down at my legs.
I suppose I could buy a motorized wheelchair. It would certainly free both me and Steve. But I don’t like identifying with those plump, smiling, white-haired dowagers scooting around their kitchens and laundry rooms portrayed in television ads, even though, at 70, I’m a senior citizen.
The biggest drawback is size and weight. Steve can toss my collapsible wheelchair in the trunk of my Toyota Camry or in the back of his Subaru Forester, and it’s no big deal to take it out when we reach a destination. How would he manage a 273 lb. Invacare Pronto M91 Power Chair with a Semi-Recline van seat, Sure Step Suspension, and True Center-Wheel Drive Technology?
I get a tiny taste of what using one of these inventions would be like when I try to navigate a motorized go-cart in a supermarket. The ride is jerky; it takes a while to become accustomed to the speed mechanism. I’m gently gliding up an isle when suddenly I realize I’m heading for a woman ahead and picking up speed! There’s no way to slow down or steer out of the way without smashing into a gigantic display of organic chicken soup. All I can do is let go of the “forward” switch I’ve been pushing, whereupon the cart jerks to a halt and I get whiplash.
“…it sure beats sitting home watching the Law and Order rerun of with Henry Winkler as a wife-killer”
Too often I find myself stuck someplace – the fish counter, say – and the only remedy is to back up. I push the left hand back-up lever, and suddenly an alarm starts beeping, as if I were driving a truck. Again, I can’t control the speed, and so I go careening backward as other shopper shriek and run out of the way.
Yes, I’m complaining. I hate my wheelchair. But I also love my wheelchair. It’s awesome. It’s taken me places I’d never have been able to go, and it sure beats sitting home watching the Law and Order rerun of with Henry Winkler as a wife-killer. But when I’m pushed headfirst into the corner of an elevator, right next to the staring toddler in a stroller, I still shrink inside.
- Find more of ‘A Chronic Fatigue Syndrome Chronicle’ here.
Share your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here