The hardest lessons earned

I struggle with verbal communication. For those who’ve personally crossed paths with me, especially in recent years, that much is obvious. Talking ever since my accident has rarely been a simple thing for me to do. Or for others to easily understand. And both have been getting harder as time has progressed. But such is life: work with what you have.

But what happens when you can’t? Or, better still, when you’re no longer able to comfortably adapt? I’ve been grappling with these questions as of late. And to bluntly answer, there wasn’t a lot that could be done.

Now, it’s not my intent to be an alarmist. I’m fine, and I’ll be better going forward. But I’ve recently come to realize that, for certain parts of my situation, I didn’t have many options for helping myself. And everything was exacerbated by the fact that my understanding of the root cause for my decreasing ability to speak was essentially non-existent. I needed help.

Update: I looked much like I felt, as evidenced by this A Musical Introduction to The Nexus demo. That video was shot three weeks back and was a particularly rough day, despite having a blast.

Control in my trunk

Turns out my increasing difficulty to speak wasn’t anything more than a body mechanics issue. In retrospect, I’ve likely had these issues for twenty years next spring. Ever since that very first wheelchair I was plunked into at the world’s shittiest rehab hospital – if I might attempt to trace it back. “Hey, he looks big enough to fit in this chair.” Done!

All these years later – in fact today marks the twentieth anniversary of a fated event, said accident – I’m still potentially dealing with their feeble, reckless attempts at my rehabilitation. The irony of it all still makes me want to vomit. I digress.

Well informed suspicions now point towards the literal support my wheelchair’s seating was not providing me. I wasn’t being held by my chair properly. And since I didn’t know anything different, all subsequent seating systems were essentially variations on a problematic original.

I’m not really sure I need to further explain why, as a quadriplegic, this is everything but an ideal situation. However, I will. Not only is my muscle control in both my arms and legs very weak as a result of my injury, control in my trunk doesn’t fare much better. And with that lack of support, my body compensated in other ways. Through a semi-unnatural use of my head, neck, and… wait for it… jaw. Fucking hell!

What that has meant

Since I’ve practically been with this situation since nearly day one, its effects have manifested themselves in too many ways to count. And I’m likely unaware of them all. But for the sake of officially marking this anniversary, I’ll lay out the major ones.

During the last bit of the nineties I was beginning to experience a further worsening (I sought out and played my share of loud guitars during the nineties, my hearing didn’t exactly emerge unscathed) and inexplicable tinnitus – ringing in the ears. But it wasn’t until my prosthodontist, who I was seeing at the turn of the century for a dental appliance to lift my paralyzed soft palate and help my speech, who put everything together. I was grinding my teeth. Primarily as I slept. That was causing my tinnitus.

I was immediately fitted with a soft bite guard. And it helped for a number of years. Until a second bite guard was needed. Which worked for another bunch of years. Until my teeth started shifting as my grinding worsened. Then I switched to a hard bite guard on my upper teeth, that kept everything in place. But I soon started to notice wear on my front teeth from the hard plastic of that guard. Notice the pattern?

That was basically the extent of the intervention I underwent up until January of Two Thousand and Fourteen. When I was referred to a spasms specialist by my General Practitioner. It was said specialist who recommended treatments I found at the time to be rather invasive. Being medication and Botox. Anti-inflammatories to help relax my jaw first. Then, should I need it, Botox would be injected into the muscles responsible for my grinding, to disrupt the neurons those muscles need to activate.

Not particularly happy with that course of action, I met with my Physiotherapist soon after. She took one look at me and said I was compensating for my poor posture through my head, neck and jaw. Then showed me some exercises to help. Which they did.

The ‘S’ hit the ‘F’

Or much more explicitly, that’s when shit hit the fan. The harder I worked, the more weight I lost, the less support my chair gave me, and the worse it all got. And the more desperate I became. So nearly a year following my disregarding that spasms specialist, I was back ready for anything. But neither the anti-inflammatories nor the Botox worked for me in the end. Next step, medical marijuana. Longer story slightly shorter, it didn’t work either (well, to counteract my grinding).

This brings me up to the start of this year. While I’ve noticed a discernible loss in my hearing in recent years – yes, from my grinding – there is no comparing that to what I’ve noticed in the last seven and a bit months. This needed to stop! With my seating being the seemingly last probable option to alter, I contacted my Occupational Therapist and the vendor I get my wheelchairs from, and we met to try to modify my current chair’s seating.

While those modifications showed some promise at first, my grinding came roaring back eventually. It was time for a new set-up, starting from scratch. And here I sit, writing this from a new, more custom fit (to my actual needs) trial chair, awaiting a new chair’s arrival.

By no means am I out of the woods at this point. Or, more accurately, I’m not one hundred percent sure this will help my grinding issues with any lasting effects – long term. Don’t forget, I’ve been sitting on these issues for nearly two decades, expecting them to sort themselves out over a couple weeks is likely too much to expect. But what I am sure about is nothing has ever had the effect this chair and seating has provided me.

Update: My Physiotherapist tells me my assessment of these issues are “essentially correct,” however they are also postural and balance related. She expects all will be further aided by both what I can do with my posture and my new chairs back rest. Or in less words, this shit is complicated.

What I’ve learned from all this

A part of my thinking towards using and assessing technology has come from the idea users must do their part to adapt to its use. You know, because most technology sucks. It’s required.

Admittedly, this thinking largely stems from a narcissistic pride in my own ability to adapt. If this post illustrates anything, I’m convinced it’s a fucking testament to human adaptability. But, of course, there are limits. What happens when users can’t adapt? Well, this post represents exactly what happens. It can have very harmful consequences.

Honestly, these are some of the hardest lessons I’ve earned, hands down. But instead of turning in on myself and being regretful about not addressing these issues far earlier, I’m choosing to wear them on my sleeve as a badge of honour. Much like I wear my shit eating grin.

Happy Bump Day!

Addendum

January 4th, 2017: So, here I sit midway through the first week of January, at the dawn of a new year, and I’ve been in my new chair (mostly) since the first week of September. Been a rough go. After essentially twenty years of sitting certain a way, I shouldn’t have realistically expected to be “plunked” into this chair and my issues would cease. But I did. And they didn’t.

But first, backing up a touch, a part of my journey through all this that I didn’t disclose previously was I also tried a new mattress with a new chair. My old mattress was nearly as old as my former seating arrangement. And the thinking went if my symptoms occur predominantly while I sleep, it’s only logical to surmise my mattress was part of the problem. But just how much? Great question. Honestly, I’m still not sure of the extent my former mattress was playing with my grinding issues. Thing was, I had some trouble adjusting to the trial mattress’ firmness – the old one was pretty soft – and a period of adjustment was required. A period that greatly surpassed my time in the trial chair.

However, after acquisition of both a new mattress and chair, my adjustment to said mattress, a fair amount of trial and error in the new chair, some seating re-adjustments to a brand new seating system in said chair, and a healthy dose of swearing, the good news is things are finally starting to improve – albeit slowly, which only stands to reason. And it was just as my Physiotherapist suspected; the seating by itself wasn’t the solution. As part of a formula, my new seating, targeted physical therapy on my back (which is the key), frequent rest throughout the day (largely through a “pressure relief” practice referred to as “tilting”), massage, a plan to start yoga, and a new mattress, it would seem lots of various aspects of the equipment, and the routine I follow while using this new equipment, are providing me some relief.

Once again, all this merely serves to further my philosophical bent: use of technology will only get us so far, it’s our ability to adapt to its use that will provide us with most of what we seek.

Hardest lessons earned alright.

One thought on “The hardest lessons earned”

  1. Really glad you’re noticing some improvement, if incrementally. And an interesting closer on your addendum. Technology, I think, was originally meant to amplify what we can already do, then it went to doing it for us, and we now often seem locked in to catching up and doing things “its” way (a perfect expression of the logic of unchecked techno–capitalist growth, ha). You’re definitely at the sharp end of that …thanks for sharing your experiences.

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