The hardest lessons earned

I struggle with verbal communication. Full stop! For those who’ve personally crossed paths with me, especially in recent years, that much is obvious. vocalizing ever since my accident has rarely been an easy thing for me to do, or for others to reliably 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 just 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 causes 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, resulting from insufficient seating in my wheelchairs. Yes, 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. “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, my 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. Sigh, I digress.

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!

Since I’ve practically been with my lousy seating systems 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…

Notice the pattern?

During the last bit of the nineties I experienced a worsening case of tinnitus – ringing in the ears. It was inexplicable. I hadn’t been exposing myself to the sort of blisteringly loud, live punk and metal I spent the first half of the nineties consuming and playing. It was my prosthodontist, who I was seeing around the year two-thousand for a dental appliance to lift my mostly unresponsive soft palate to aid my ability to speak, by redirecting air from my nose to my mouth, who put it all together. By witnessing the wear on my teeth, he determined I was grinding my teeth. I very quickly surmised armed with this new to me information, I was grinding as I slept. That was causing my worsening tinnitus.

A brief but relevant aside: soon after this revelation, I stopped using said appliance. Not because it didn’t work, it showed a lot of promise, but it seemed to trigger my tinnitus. Knowing what I know now, I’m not so sure my palatal lift was responsible.

I was immediately fit with a soft bite guard. Which helped for a number of years. Until a second bite guard was needed. And 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?

The ‘S’ hit the ‘F’

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 doctor; my grinding was continuing to get much worse. It was said specialist who recommended treatments I found at the time to be overly invasive – being medication and Botox. A skeletal muscle relaxant (Baclofen), primarily used to treat spasticity, to help relax my jaw first, then, should I need it, Botox would be injected into the muscles in my jaw that are responsible for my grinding – to disrupt the neurons my muscles require to activate.

Frankly, not particularly happy with that course of action, I met with my physiotherapist soon after. She took one look at the muscle formation in my jaw and my seating positioning when we met, and said I was compensating for my posture through my head, neck and jaw. Bingo! She then showed me some exercises to help, which they did, but that’s when shit hit the fan. Seemingly the harder I worked, the more weight I lost, the less support my chair gave me, and the worse everything got. Vicious!

So nearly a year following my disregarding the spasms specialist, I was back at it, ready for anything. And I got everything recommended the year previous. But neither the meds nor the Botox worked for me in the end. The meds made me foggy in the head. And the Botox, which was shot into my lower jaw where the muscles responsible for opening and closing my mouth are located, would likely need to be injected into specific muscles, accessible only from the inside of my mouth given I grind my teeth back to front. What a pain, or likely would have been. Apparently it’s painful to have done.

However, I should mention, Botox can only be injected into a patient once every three months – it’s a neurotoxin after all – and before we could try injecting Botox through the inside of my mouth, I started to experiment with medical marijuana (the most frustratingly unscientific practice in modern medicine) while I waited for the next three month window. Longer story slightly shorter, the marijuana was hit and miss – it did wonders for my circulation and my general muscle tightness. Just not my jaw, specifically and consistently at least.

Modifications

This brings me up to the start of this year. While I’ve noticed unwanted effects on my hearing in recent years – yes, from grinding my teeth – there is no comparing that to what I’ve noticed in the last seven and a bit months. This needed to stop! And with my seating being the seemingly last probable option to alter, I contacted my occupational therapist and the vendor I get my wheelchairs from. 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 long term effects. Don’t forget, I’ve been sitting (har!) 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 technology sucks – in the sense it introduces just as many problems as it is meant to solve. 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

August 5th, 2017: Well, it’s one year on from when I originally published this post, and let’s be real, been a rough year. Let’s see, I’ve had a persistent testicular infection, pre-dating the arrival of my new chair and it’s still with me with just under a week to go until I finish this round of antibiotics, a broken elevator that needed to be nearly completely replaced – leaving me stranded upstairs in my home for a month – and this to contend with. Fuck!

In hindsight, I shouldn’t have realistically expected to be “plunked” into this chair last September and my issues would magically cease, especially with everything else going on. But that’s exactly what I did. And the issues didn’t cease.

However, the acquisition of my new chair; my adjustment to that chair; a fair amount of trial and error in the new chair; some seating re-adjustments to the new seating system (aligning my head back on top of my spine, or also known as “tucking my chin,” via moving my headrest way back being the most significant); lots of time; and both a healthy dose of swearing and a fair amount of frustrated fuming, the good news is I’m in a much better space both physically and, much more importantly, emotionally.

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, frequent rest throughout the day (largely through a “pressure relief” practice referred to as “tilting”), massage, adaptive yoga, and a new mattress to sleep on, it would seem lots of varied pieces of equipment, and the routine I follow while using this new equipment, are providing me some relief. With some work to do.

But 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.