Mobility issues stink.
That sentence deserves to be its very own paragraph. No embellishment is necessary to the meaning and truth of the above statement, nor could said embellishment be even remotely beneficial. Although it could be argued that for someone with MS who’s trying to live an independent life as a self-employed musician, the level of “stink” increases exponentially in regards to those issues.
As someone whose right leg quit on him years ago, I have a few different ways that I get around: I have my powerchair, powerful and nimble but can be a pain to deal with when traveling if there’s no way to transport the chair in and out of vehicles; I have my scooter, nice for traveling because it breaks down into 5 easily packed pieces, but isn’t very fast and doesn’t turn around sharp corners well; finally, there’s the rollator, much easier to travel with, easy for someone to carry up/down stairs for me when that’s the only option, and excellent for stretching/exercise/creative maneuvers to get me up and down stairs, but very limited in distance before I have to stop and rest.
The combination of the three mean that I have various ways to achieve the things I need to get done during the course of my day. And if one (or even two) of them break down at a given point, well, I still have options.
When all three fail at the same time, it’s incredibly depressing.
This is the situation I find myself in as I sit at the computer this evening. Mostly anyway.
It all began with the powerchair: A few weeks ago I had noticed that it was starting to make some funny noises on the left side (there are two “drive wheels”, one on each side, and each has its own motor). I happened to be taking the chair to Denver for a performance, and so I had my “chair tech” – a very nice man named Bob who has created a cottage business buying, selling, and repairing chairs and scooters – meet me at the venue so he could have a look and give it a test drive. He put the chair through its paces in the parking lot, made notes, said he was going to have to do some research on the matter and get back to me. I used the chair that evening with no problems.
Over the next two weeks, the chair started acting up more and more often: one side or the other would partially or completely fail, and the chair would do slow circles forwards or backwards while a gear spun, desperate for purchase of its counterpart. Eventually a loud “clunk” would be heard and the gear would catch, and the chair would operate normally. So it wasn’t my imagination; something was clearly wrong and in need of attention.
In light of this situation, it was suggested by SWMBO that I take the scooter out for a spin to ensure that it was functioning well before Bob took the powerchair home to work his magic. However, upon attempting to get the scooter going, I had found that the battery compartment had failed, and wasn’t getting power to the scooter. Oh, goody; something else for Bob to fix.
If you’re keeping score, that’s one non-functional scooter and one semi-functional powerchair. It gets better….
When Bob and I finally made phone contact, he said he had business in my neck of the woods the following week, and that he would give me a call to set up a time when his schedule became clearer. He also said he’d bring up a spare battery compartment so I’d have something to get the scooter going. Very good; I would look forward to his call. Meanwhile, the instances of the powerchair’s one-sided failure were increasing.
I had a doctor visit scheduled for late Friday afternoon, which is about 10 miles from my regular Friday gig. The building is situated in such a way that there are exactly zero close parking spots, so we’re looking at 120 feet of walking (very close to my limit, depending on the day). Thankfully, I was feeling good that day. My naturpath is a brilliant, caring, honest man, and there really are none like him in the state; he’s worth the drive as well as the walk.
After I get done with the doc, I stand up and pull the rollator in front of me and take a step, and something didn’t feel right. Three more steps, and plop! – the frame had broken off where the leg attaches to the rest of the unit, and the part of the frame still attached to the wheel was now dragging on the ground. For those of you who have broken aluminum bicycle frames (ow! Sucks to be you), you already know what I am about to say: This is unfixable, and the apparatus has ceased to be useful as a rollator. I’m thinking this is the end of my day; as this is my only means of bodily transport, I’m hosed. Someone will have to push me to my van in a rolling office chair or something, I’ll drive home with a huge black cloud over my head, I’ll have to call a sub for the gig, and I’ll have to have SWMBO meet me at the van when I get home with… er… SOMETHING that will get me into the house. Defeat begins to ooze out of my pores…
While I mentally scramble to put together a mobility contingency plan, Doc comes up behind me, and says, “Wow, that’s not good. Hey, we got this freebie rollator over here that someone donated, you wanna use it?”
I COULD HAVE CRIED. “Holy cow, Doc, you sure?” “Oh yeah, it’s just been sitting in the way for a few months. Take it!”
This is what a good friend of mine would simply call a “God thing”. And I have no issues with that categorization whatsoever.
The rollator isn’t sized well for a man of my proportions (5’11”, 1/8 ton), it’s wiggly and rickety, the brakes have a strange habit of only functioning when locked, so it behaves like an old-style walker with the “skid skis” on the back and teeny wheels on the front, and it’s just on the useable side of dangerous. It’s also infinitely better than the alternative, which would be trying to get by with the broken rollator. I will make it to the gig, and into the restaurant, and survive. (And get paid!) Huzzah! Praise God!
One of the other downsides to this particular unit, however, is that it requires twice the energy for me to get around on it, and by the end of the evening, I am spent. I did manage to get my gear inside and back out to the van with no assistance, which is no mean feat when you have to balance everything on the seat of the rollator and treat it like it’s the world’s most poorly designed shopping cart.
I drive home and pull out the loaner rollator, head towards the front door of my condo, and my 15 year old cat comes wandering down the breezeway towards me. The sound of the loaner (which for some unknown reason softly rings like a bell when it moves) makes him stop and run away before he hears my voice well enough to trust that it’s really me. Cats…
I get inside and safely transfer to the powerchair. Success! But now I have yet another broken unit to contend with. And there was a fair bit of custom work done on the brake system so that I’d be able to use it without the brakes failing after a week (the only under-engineered aspect of this model). The good news is that SWMBO purchased two of these particular units at the same time, and so it just needs to have the custom stuff transferred to the new unit. Now all I have to do is contact my “rollator tech” (a friend who builds and repairs bicycles), get him the pieces, and he can put Humpty Dumpty 2.0 back together again.
And wouldn’t you know, contacting him ALSO turned into a fiasco with a newly-failed piece of equipment. (“But wait! There’s MORE…”)
Called, left message, realized that I had called a business number that was out of service, contacted his fiancée on Facebook and left a message there. Great. Guy calls me the next day and leaves a message while I’m teaching a lesson. I return his call using my cell phone (no landline for years – it’s the 21st century, don’tcha know), and I get to leave my own message. However…
…when I go to hang up the call, the screen fails to come back on so I can press the red hang up button on the touch screen. No response to buttons, pressing the screen, talking to it, shaking it and threatening to throw it across the room, nothing. I hear the voicemail asking “Are you still there?” repeatedly, and it can’t hear me or let me hang up the call. AAUGH!….
After putting it on the charger and waiting over an hour, eventually the screen returned, and allowed me to do a hard reset, so the phone is working fine again. And I’m sure many of you have had to deal with smartphone failure before, but for me, the notion of possibly being stuck with no way to get around and/or communicate with the outside world is rather scary and depressing. I’m sure it’s analogous to elderly folks being told they can’t drive their cars anymore. Yes, I have a less-than-ideal-but-functioning rollator, and my power chair hasn’t officially failed yet, but it’s enough to make me consider very hard what I would have to do and how I would contact people in an emergency.
Not that I really WANT to talk to you plebeians, but one must do what one must do for survival. (Can you say “holier-than-thou introvert”? Yeah, sure you can…)
It took a while to get things – HA! – rolling in the right direction, but one by one, things got fixed. Two refurb motors for the chair which allow it to max out at 10mph (!), new battery for the scooter, and old brakes on new rollator. And the phone has only had one slight hiccup since the previous incident. Let’s hope this latest epidemic has officially run its course… otherwise I’d be stuck in a chair in front of the computer doing…. something….