I keep apologizing for the fact that this blog, the one I pretend is about sewing and epilepsy, has been so heavy on the accessibility/mobility/weather rants as of late. I also keep promising that I’ll cease and desist with said rants. Well, I’ll stop doing both those things (the apologizing and the promising) and accept that this is the winter of my, and thus of your, discontent. I’ll return to sewing as I wish and as energy allows, but it’s hard to write project recaps when the projects themselves are constantly sidelined by the logistical and emotional labour required to deal with snowstorms, chair failures, and the general sense of malaise that results thereof.
As difficult as it might be to believe given the thousands of words I’ve devoted to it, I haven’t documented every twist and turn of my wheelchair saga—far from it. I’ve long given up on the idea that I might write a post every time I’m homebound due to inclement weather, too. In the weeks that have elapsed since I last made either topic the focus of a self-indulgent essay in the guise of a blog post, there have been several major wheelchair developments and several additional snowfalls, including a significant one three nights ago. I wouldn’t have minded the admittedly beautiful blanket of white if we hadn’t had two gorgeous, false-hope-inducing days a few weeks back. That vacation from the winter that never ends was the stuff dreams of an early spring are made of; now, the climate has regressed like a petulant teen. I checked the forecast this morning, a masochistic act if there ever were one, and was entirely unsurprised to find a special weather warning due to ice pellets for tomorrow, the first day of spring, so yeah.*
On the winter front, then, my accessibility-related problems persist. Messy sidewalks=unhappy chair, and unhappy chair=unhappy me. While there’s no longer knee-deep slush, that’s of little consequence because I’m not willing to take risks with my now-repaired ride. After all it’s gone through this year, after all I’ve put into having it fixed, any accumulation is too much accumulation. On the plus side, however, there are more and more snow-free days, and I trust that we’ll soon flip to uncomfortably muggy. I can’t wait for something novel to be mad about.
More importantly, my wheelchair has consistently worked for over a week: no glitches, no trauma to it or to me, no unexpected repair bills. This is, but shouldn’t be, a miracle of sorts. Praise the mobility powers that be for the gift of a power wheelchair with power and wheels.
If I’m not mistaken, I ended my last missive at the part where my chair had just been returned to me with loaner motors installed. I was very glad to have it back and grateful that the mobility company had worked to find an interim solution to bridge the gap until the warranty-covered replacements came in. The loaners were a previous model and lacked some of the features that my old/newer fancy ones had, but they were compatible and worked OK, so what did I care. I could leave my building without my husband’s assistance, and that’s all that mattered.
I soon noticed, however, a disconcerting rattling sound that my amateur diagnostics determined was coming from one of the four baby wheels. (These little cuties—two at the front and two at the back—are formally known as casters and are not to be mistaken for the two big fellas formally known as … wheels?) Given that this was a fresh problem and not one of the handful to which I’ve grown accustomed, I chalked it up to a temporary, irritating-but-harmless issue related to those loaner motors. As in, maybe they didn’t fit perfectly in the chassis and were rubbing against something. They’d be swapped out soon enough, so again: what did I care?
A lot, at first, if the amount of time I spent obsessing about it is indication of anything, but I got over it. I monitored the noise for a few days, using my best coping techniques (the classic diaphragm breathing along with self-talk of the likes of, “You’re overreacting, K; this is probably nothing; there isn’t a secret cabal conspiring to keep you off the street and/or eliminate you by means of wheelchair accident”). I then asked my husband to take a listen. His reaction was a levelheaded version of my own: audible diaphragm breathing as to not express his irritation along with supportive-partner talk of the likes of, “You’re overreacting, K; this is probably nothing.” Being more rational than I am, he didn’t mention a cabal. I decided to roll with the consensus we’d reached and embrace being mobile. Besides, my chair had just been in the shop. Surely they’d have caught any glaring safety concerns.
There’s some foreshadowing for you.
I continued alternating obsessing about the noise with ignoring it for another week, at which point a tech of whom I’m not particularly fond—the “not my problem” guy—made a house call to install a factory-fresh set of motors. After he’d finished and was packing up to go, I asked for his professional opinion.
He listened to my concern. Reluctantly, but he listened.
His verdict? “It’s nothing. Likely salt in the wheels.” This was marginally more helpful than his “not my problem” had been.
I asked him what I should do about it. Although it was reassuring to know that there wasn’t anything majorly wrong, the ever-worsening sound was at this point too loud and annoying to be ignored. My wheelchair is usually stealthily quiet, and now I was a bovine with a jangling cowbell preannouncing my presence everywhere I went. I turned heads in a bad way; even the audiobooks perpetually playing from my AirPods couldn’t drown out its cries for attention.
He shrugged. Channeling the assertiveness of which I’m capable when I want to be, I pressed on.
“Should I get it serviced after the winter?” I inquired.
He was genuinely baffled as to why I’d suggest the common-sense thing another employee at the same establishment, most maintenance guides, and the entire internet state is best practice.
“If you want to, I guess.”
Cluing in that we were getting nowhere, I dropped it. Perhaps the wheelchair’s new voice added character in the way a charming brogue does. Rather, in the way an unpleasant and unsettling accent from a region populated by ogres might, so basically the opposite.
Lingering concerns aside, I was relieved to have wrapped up that chapter of The Sorrows of Young Wheelchair. It was excellent timing, too, since I had friends visiting from out of town the next weekend, and we planned to do a fair bit of wandering in the downtown core—an activity that would require a not-broken wheelchair.
For two days in a row, we explored the city for hours on end, I atop my chair, they atop their legs. Good times with good people. More than once, however, my pals had to give me a boost to get my struggling chair from busy street to crowded sidewalk. (Good people indeed!) This was stressful and made my internal alarm bells ring almost as deafeningly as my cowbell tracker was. Toronto has its fair share of bad curb cuts, but they’ve never been a consistent issue. My power chair, true to its name, is powerful enough to handle them. The fact that it suddenly couldn’t confirmed what my ears and my heart, increasingly insulted by the ever-strident rattle and the sting of requiring help, were already telling me: that the obnoxious tech was wrong. This wasn’t merely a question of road salt that would miraculously work itself out of the wheels with no human intervention.
Despite my misgivings, I rode it out (in the literal sense) for several more days. Part of this was because my husband kept telling me it was probably OK; part of it was because I’m used to being told, implicitly or explicitly, that I can’t trust my instincts—this is the topic of a whole other blog post—and thus now instinctually question them. Never mind that my intuition has proven quite trustworthy in recent years, especially as far as my wheelchair is concerned. Nearly every time I’ve thought there was a problem, there was indeed a problem. Believe me when I say that I wish my track record were worse here. My spidey senses go off all too frequently, and I’d much rather be wrong and save myself money than shell out for the privilege of being right. The following Tuesday, then, in equal parts empowered and disheartened by the self-reminder that sometimes I do know best, I called and asked to have someone sent out.
If this company had some equivalent of an Air Miles program (perhaps I’ll suggest they start one, and perhaps I’ll suggest naming it … Mobility Metres? I’ll workshop that), I would undoubtedly be an elite member. One of the only perks of being such a high-frequency customer is that I’ve developed a genuinely good relationship with a service rep who’s been assigned to my file and was instrumental in sorting out my recent motor debacle. I appreciate his dedication to getting me off his back and know he has my back in turn, and there’s something to be said for that. Five stars. On the phone, he asked all the right questions, said the right things, took action to correct mistakes that had been made (not by me, thank God), and arranged for a service call to take place the very next morning. I was hoping against hope that they’d send the cheerful British technician who took care of my second set of dead batteries, but luck isn’t always on my side—what an understatement—so grumpy tech I don’t like it was. The very same tech who had told me a week earlier, and with great confidence, that my chair was fine to drive.
I met him in the lobby of my building, figuring that there was more room there for me to give him a live demo of how my busted wheelchair was clunking along and more room for him to execute the minor fix I assumed was all that would be needed to transform it into the smooth-riding chariot it’s meant to be. As always, I had scoured the internet in a bid to diagnose the sound and had concluded that it was either a bolt that needed tightening or an axle that needed oiling. Practising selective reading, I had skipped over all other possibilities. I’d been instructed not to worry about it, after all, and who am I to ignore the expert?
He had his toolbox ready and a marginally better attitude than he had his last visit. Both good signs.
I’d driven a mere three metres, if that, when he instructed me to stop.
“I don’t need to see anything else,” he said, placing the toolbox on the ground and retrieving his phone from his pocket.
“The casters need to be replaced. All four of them.”
He took photos and a video and informed me that I’d hear from customer service with an estimate and a timeline for repair. Such déjà vu.
Still hoping that this was an annoyance rather than a safety hazard, I asked him if I could keep using my wheelchair in the meantime.
“I wouldn’t if I were you,” he said. “Maybe in the neighbourhood, but no further. The casters are wobbly.”
The image of my friends and I traversing the city with reckless abandon and in ignorant bliss the previous weekend flashed before my eyes.
To my credit, I responded to this news calmly. I’m squarely in the “it is what it is” phase with my wheelchair; I suppose that’s the benefit of having spent months navigating problem after problem and dozens of hours trying to get things sorted in order to resume normal activities. My biggest immediate concern, for better or for worse, was that I had tickets for a musical the next evening and was very much unwilling to miss it. (You’ll be glad to know that a solution was found, the musical was fantastic, and my husband, who pushed me in my wheelchair, is still alive.)
By the end of the business day, I knew what the repair would cost—not a small sum but not as bad as it could have been—and had a vague idea of when it would be carried out. The plan was solidified within twenty-four hours and necessitated fewer than ten nagging calls from me. This just might be a new record, so yay! There was some vague talk about having to wait until the next week because there were no techs available until then, blah blah blah, but I gently suggested that being stranded another weekend at home with no means of independent transport was unacceptable. My pushiness paid off as my favourite customer-service dude pulled some strings to make it all happen in a timelier manner.
On the Friday, then, a technician from a different location of the same company picked up my chair, took it to the shop, did the work, and brought it back to me the same day. A fresh set of eyes and refreshingly not grumbly, he was friendly, professional, and thorough, and he explained what he’d found and the labour he’d performed without my pulling the info from him piece by painfully extracted piece.
“One of the bolts was almost completely out,” he reported. “It’s kind of amazing you didn’t lose a caster while you were out on it.” I had another flashback to the hours-long rides far from home I’d taken on a chair making noises that I now knew were its death knell. The other three casters were “very, very rusty,” according to him, and there were other little problems I don’t remember because I’m not a mechanically minded person. Give me a needle and I’ll sew you a dress; give me a screwdriver and I’ll find you the number of a handywoman. In any case, he had changed the four casters, lubricated everything, and checked the battery. I asked what I should do to prevent future caster failure, and he told me that it would be hard to avoid in a city such as Toronto unless I refrained from going out when there’s salt on the sidewalk and/or precipitation of any kind. I enthusiastically agreed that this was entirely unrealistic.
“In terms of preventative maintenance,” he continued, “you might want to consider bringing it in for servicing at the end of the winter.”
Oh really. I wished I had recorded this conversation so that I could play it back to Mr. “Not My Problem, Why Would You Do That.”
I gave my chair a trial ride and marvelled at how eerily quiet it was. Back was its stealthy self; gone were the cowbells. And yes, I’ll make an appointment for a thorough wheelchair cleaning when the weather clears and the risk of snow has passed, be that in a month or in July.
*I clearly failed to publish this in a timely manner. I was out of commission due to a nasty infection; this began to subside just in time for my husband and I to leave town for an overnight trip to visit dear family friends. Not that I owe you an explanation, but there it is.
De Morbo Sacro: Life and/with Epilepsy 