Driving Miz Cynthia, Part Two

Eric the Wheelchair Guy wears a permanent grin and stands tall.

The standing tall part is important, because his clients mostly don’t stand at all.

On Friday night, Sept. 16, 2016, I fractured my left femur just above Elmo, my replacement knee. I lived in a wheelchair, facing hip-high amputation of my left leg, for about two years while I fought health care bureaucracy, cost-conscious HMOs, and myself to figure out a way to walk again. (Spoiler alert: Elmo won!)

I documented my adventures in remobilization in this blog. They’re awfully self-indulgent, occasionally icky, and probably only of interest to me, but on the off-chance that they help someone else with a catastrophic injury, I’m keeping them together here. If you don’t want to read them, that’s OK; I still love you. If you do, you might want to start from the beginning, on the archive page that lists all posts.

Eric is helping me solve my wheelchair problem. Last Thursday morning, Mom and I went to his place to check out new wheelchairs.

WARNING: What follows is a fairly intricate discussion of wheelchair selection. For me, it’s simply part of the Saving Elmo journey, but I suspect it’ll be pretty boring for anyone who doesn’t need a wheelchair. Apologies.

Britta, my current ride, is a Sunrise Medical Breezy Ultra 4, AKA “hospital wheelchair.” It’s a nice, stable ride for someone who can propel themselves through the house but rarely gets outside unless someone else is pushing.

Britta was fine for my short-term busted leg that will be mere memory in three or four months, and I’d gotten her at the terrific used price of $350 (she retails for $1,800 or so new). But now, eight months later, I’ve learned enough about mobility to understand that cheap isn’t always the best idea. Britta has some issues:

• She’s too wide to get through many doorways; to enter the bathroom I had to transfer to a smaller “transport chair.” Transfers are the most dangerous routine act you perform in wheelchairs, and they eat minutes.
• Britta’s heavy–about 45 pounds–so going up an incline means I’m pushing my not-inconsiderable self PLUS Britta.
• Her main axle is back behind me by about 8 inches, which puts her wheels* too far back for efficient self-propulsion. It takes a fair amount of strength to get her moving, her momentum runs out pretty quickly, and she’s especially tiring to maneuver on carpet or rough terrain.
• Her far-back axle means it’s nearly impossible to tip her if I’m being pushed. Unfortunately, it’s also nearly impossible to pop wheelies, i.e., raise her front casters from the ground to get over thresholds and low stairs, when I’m sitting in her.
• Her wheels are solid, treadless rubber, quiet and easy-moving on hard indoor surfaces like wood and tile but dangerously slippery on wet surfaces, which is outdoor Portland much of the time. She’s got a tendency to slide on wet inclines, which is a bit scary, and the solid wheel lets me find every single bump in my path.
• Britta folds inward, like an accordion, reducing her width from about 32 inches to maybe 16. But she keeps the same awkward profile, tough even for able-bodieds to handle, and her wheels need wrestling to remove. I cannot, by myself, heft her over the bumper and into my car trunk.

My new “normal” means routinely driving, going up and down inclines, slipping in and out of store aisles and bathroom stalls, sitting close to doors and counters. I can do all those things in Britta but it takes a lot of focus, effort, and forward-planning (not to mention a small army of helpers sometimes).

Besides, the sight of me toiling laboriously up a hill at about a quarter-mile an hour provokes…responses. Some people simply grab the push handles of the chair and zoom me up a hill without permission. Some ask first, and look appalled (or argue) when I say no. (So sometimes I just shut up, smile, and let them push.)

Others slow (way) down and pace me, i.e., they come to a complete stop, patiently wait for me to advance a foot or two, take the next step, and stop…etc. Even in the rain, bless their wet hearts. Or they avert their eyes and hurry past, saying nothing.

I understand and am not offended by any of those reactions–I’ve had them myself when the situation was reversed–but I do become embarrassed. I’d much rather get up the damn hill without becoming a sideshow.

As a result, there’s a lot of stuff I probably could do that I don’t…too much trouble and embarrassment. That’s why I called Eric.

Eric’s part of American Seating and Mobility, and I’m an unusual client for him. “We don’t get a lot of broken legs** in here,” he said, “So…what is it you’re looking for, exactly?”

“Well,” I started, “I need three things from my new wheelchair:”

1. Easy to self-propel outside, up hills, on wet surfaces, and into/out of tight spaces
2. Easily load/unload it into the Camry, by myself, in ten minutes or less
3. It’s at least as (hopefully more) comfortable as my current chair

“Anything else I don’t need. So whaddaya got?”

…and the wheelchair fashion show began. He brought out a modest model, kinda glitzy and 10 pounds lighter than mine but still accordion-folded and too heavy to manage. Nope.

The next had much better wheels that helped you up grades, but didn’t come apart for loading into a car. Nope.

Then wheels and came apart easily, but the heavy frame needed three hands to manage and it was hard to push.

Nope. Nope. Nope.

Finally, Eric gave me a long look. “Wanna see,” he began, slowly, “The lightest high performance wheelchair on the market? We just got one in for another client, a quadriplegic who races wheelchairs. We usually only fit these to people with permanent mobility issues, but your requirements…”

(Cue Also Sprach Zarathustra) He wheeled out…The Ride.

Somber grey, spare, spartan, by a company called TiLite, the ZRA in titanium. Rigid frame; you could fold down the back or take it off, reducing it to a fancy, 15-inch high wheeled cube.

“Sit in it,” he invited. I locked wheels, stood, pivoted, sat. The Ride was about two inches too small for my womanly curves–its wheels brushed my hips–but…wow.

Wow. Just wow.

More comfortable than my office Aeron chair, it snuggled up and caressed my back. I felt enveloped, protected. I gave one wheel a light push with two fingertips, and it shot forward…on CARPET. The brakes were discreetly under the chair, no more running into them when I transferred. Smartphone pocket on the underside, right where I could reach.

Yeah, but could I get it in the car? “No problem,” said Eric, “Pop off the wheels, fold down the backrest, like so. See if you can lift it with one hand.”

Yep. “THIS one.” I said, “How much?”

He told me.

Gulp. “Let’s do it.”

I swear, you could build a house with fewer choices than it took to order that ride. “Let’s start with the easy stuff,” Eric proposed, “Camber.”

Cam-who?

Turns out that’s the angle of the wheel to the ground. Straight-up-and-down (0 degrees) is narrowest but least stable. Basketball players push the bottom of the wheels to a 9-degree slant–or more–which means they can turn on a dime without tipping…but width increases dramatically.

“2 degrees,” he decided, “It’s adjustable if you need more. What about your front forks?”

My what?

Two hours and something like ten single-spaced pages of options. With each, Eric patiently retrieved samples, explained advantages. Would it add weight or decrease it? Extend maneuverability and speed? He measured odd distances and bodyparts.

You can get these in just about any color of paint you want, with all sorts of decals to match your personality (I decided not to comment on the alarming number of skull designs). In the end, though: Paint gets chipped. Decals wear. And titanium is a very pretty metal.

My new ride will be natural titanium, satin finish, with black or grey trim.

“Cushion. What are you using now?” he asked, and I smugly proffered my primo gel-celled sit-upon.

“I could just keep this one, save some money…”

He eyed it pityingly, “Usually those get a little… hot and uncomfortable after awhile. Try this one,” and he held out a ginormous contoured thing, about a third the weight of mine.

I sat. Wow. OK, new cushion, too. This was getting expensive. “Uhm…what’s the resale value on this chair once I don’t need it anymore?”

“Practically zero,” he said cheerfully, “You’d have to find someone with close to your measurements and your particular issues. It happens, but I wouldn’t count on it. You’re not the typical user.”

Ulp. Costs like a small car, and I guess I’ll be using it when I’m an old lady or something. 

“Look, we can work with your insurance to pay at least part…” he began.

I’d tried that with the last wheelchair. Kaiser required that I schedule an evaluation–next available in two months–and then go through a rehabilitation class, at the end of which they’d decide if the more advanced wheelchair was warranted. It was a three or four month process, with no guarantee of approval.

As his Alzheimer’s progressed, my father required a special tilting wheelchair. The insurance route to get it cost more than nine months of intrusive examinations, lost paperwork, PT evaluations that asked my father to do things he couldn’t understand let alone perform, and lots and lots of arguing and unreturned phone calls.

Dad died two days after the chair arrived. The insurance company had the grace to apologize.

“Nope,” I said firmly, “I have until July 10 to start driving myself. It’s June. Every day that I can’t drive is costing me $125. Let’s do this.”

“You will be,” Eric said solemnly, “The third patient I’ve ever had who paid cash.”

Thank heavens for savings and retirement accounts and financial guys who grimace but get you what you need. Regaining mobility is NOT cheap. Home modifications, wheelchair ramps, hospital beds, reach sticks, clothing modifications (try managing a pair of slacks when your leg brace keeps sliding onto your ankle)… Basically, anything that helps you live with an injury is on your own dime, not covered by insurance.

It does make a heckuva tax deduction, though. 😉

So my new ride arrives in about three weeks, third week in June. I wish it were sooner–I’m moving home today and will be stuck in the house or paying that bloody $125/day until my new TiLite arrives–but soon I’ll greet my new best (titanium) friend.

Was gonna name her Titania, but one of my Facebook buddies pointed out the close resemblance of “Titania” to “Titanic,” and I don’t need any more catastrophic accidents in my life, thank you very much. Naming will wait until she introduces herself.

There is an ulterior motive here (you knew I had to have one, right?): I know how The God of Adventure thinks. He’s been chortling through all my reasonable, economic-minded, patient-compliant behavior for the last eight months, and making sure that bone doesn’t grow.

So I figure it’s time to do something stupid. (Well, not as stupid as falling, but close).

I clean out my bank account to buy this incredibly fancy wheelchair, acknowledge that I’m in this for the long haul, and learn to speak real wheelchair. Then he’ll say, “Really? ‘Zat so?” and push that damned adventure button of his. The one that starts the bone healing.

I start growing legbone like it’s going out of style. All of a sudden I’ll be left with the Ferrari of wheelchairs, which costs like a small car or a good kiln, for no good reason. The God of Adventure will live off that one for weeks.

Why didn’t I think of this sooner?

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*In wheelchair parlance, “wheels” are the big back wheels that do most of the propulsion. The little wheels in front are called “casters.”

** Here’s a thing I’ve noticed about the medical community in general: Patients become their ailments. Until I’ve made a connection with the caregiver, I’m not Cynthia, I’m the “nonunion femoral fracture,” or simply The Femur.

It’s a simple way for medicos to quickly describe the issue, but I do make sure they realize that there are other body parts–including a pretty good brain–attached to The Femur. Once we’ve gotten to know each other I become an entire human again, but I’ve resigned myself to continuing to be The Femur in third-party discussions.

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