Author Archives: Jason Chiles
Posting this just to doubly announce that I have moved Geek on Wheels to its own venue. DarthObvious will live on with my gaming friends, our emails, the occasional post sent to both here and my new site. It won’t die.It’s been around since before Facebook was born. Even if it ends up being amateur gaming clan name…it will never die! (until we get and frame the cease and desist from Disney)
I’ve just had a few opportunities starting to creep at the edges of my conciousness that I felt needed their own identity.
How’s THAT for being overly philosophical?
I announced GeekonWheels.ca on Facebook and Twitter back in October 2014, I was reminded that some people may have been following my posts directly via WordPress. If you have, now that I’ve worked out some bugs with the new site, I hope you’ll head on over to http://www.geekonwheels.ca/ and subscribe and/or follow my new meanderings. I hope to add much more content, thoughts, random silliness and general observations of a life on wheels there.
Life is still changing. Let’s see what this new direction brings. Care to join the trip?
So I have a dilemma. Something that is pissing me off in that I don’t know if I’m happy with how I reacted to a frustratingly weird event today.
Regulars to my rants will recall about a year ago, I went on a royal rampage about how I didn’t need to be cured. That there was nothing wrong with me that could be prayed out. I got a lot of good and interesting responses to that post. Let’s see what people think about this one.
Cut to the scene!
Parking lot outside the Metro grocery store on St. Clair. It’s a hot day, sun blazing down, but the weather is due to change, getting quite cooler for the week. By now, I know that means my legs will misbehave quite regularly, which makes loading and unloading the chair an interesting challenge. Regular readers will also know that I no longer turn down offers to help, pride being useless versus the chance of injury. I was quite grateful when two women walked up, one a tiny hispanic lady, the other of some caribbean descent with an accent that was harder for me to understand than small town Irish dialects. Her pink paste in her hair that looked like someone had dripped paint down the front made for an interesting view. Calling it streaks would have been an understatement…but I digress. She offered to help load it, so I stepped out and leaned on my walker (both hands firmly on it mind you…bear with me) and she loaded it quite well, on its side as I asked and I thanked her profusely…but then…it got weird.
Her little friend tried to hand me a pamphlet…even though she had just seen me using a walker with BOTH HANDS. I groaned inwardly the moment I saw it and tried to put a nice smile on my face. The loading lady turn to me to ask what happened. It’s my most common question after all, so I thanked them both and told them it was a spinal cord injury. She clucked her tongue, threw her head back and I swear she cursed at my spine. Really. That’s what it sounded like anyway. Then it got REALLY awkward.
The little woman pushed the pamphlet back at me, and I grabbed it with two fingers as the loading lady asked me, “Have you heard of the Healing School my friend…the lord has worked miracles for us there…you should come!”
All I could think was…how do they keep finding me??!?!
I took a deep breath. Thanked them very much for the help, but firmly stated I wasn’t interested and that no faith healing would cure nerve damage…have a good day. She continued to go on about the lord’s work as I slowly walked around to the driver’s side and then walked away.
So my dilemma?
Well first, I’m pissed off that I didn’t use my line I promised I’d use the next time: this ever happened…”why is there something wrong with me?”
Second, I wonder if I should have stopped being so bloody gracious and confronted this foolishness head on. I know in the short-term, it would have done nothing to change the opinion of these ladies…but this is something that gets under my skin. There is a lot of really good, REAL science being done right now to help people with much worse spinal cord injuries than my own. From laser scalpels that can detect scar tissue and only cut it away while avoiding healthy tissue, to stem cell regeneration of nerve damage, to even the exo-skeletons that I have mixed feelings about, but that I recognize the value of. This is science. This costs money. This needs resources that could be put to real world use.
There are far too many, though, who would rather donate money to some faith healing church on the basis of a belief with no reality to it. In fact, their beliefs often hinder the science that COULD help so many.
Now look, I am not painting every one of faith with the same brush. I have many family and friends who believe differently from me who give me fantastic support. I appreciate there prayers and good will, even if I don’t believe as they do. I truly thank them all because their support is based in reality and helps in many ways.
It is just certain types of people of faith, for example many of those who go to mega churches with TV shows that feature some charismatic guy in a perfect white suit and the best smile money can buy…sorry am I being too specific there? You see after Shannon read up on this pamphlet (and really its more a mini-magazine, Matt Kean will love this thing) it turns out this Healing School has a TV show on Vision TV, a faith-based station in the Toronto area. They claim to have cured a woman with some “rare” disease of both her blindness and her paralysis of 12 years. Apparently, she jumped from her chair and danced on stage as she was healed.
Because muscles atrophied from 12 years of paralysis regain strength in an instant, eh?
Of course if you want to be healed, you have to apply and go through a screening process. Wonder what gets screened eh?
So tonight I am kicking myself. Perhaps I handled it “properly” making my point while still thanking them for their help and being polite…but another side of me wishes I had done more. My manners be damned.
Maybe one day I should take them up on the offer…but then I’d probably just be told it didn’t work because I didn’t believe.
I’m back. It was a spring where I got tired of whining and complaining, but summer is now in full bloom, trips coming up and fun in the sun to be had. Before any of that could happen I had one major issue hanging over my head that had to be addressed.
My driver’s license.
Months back I posted pics and details about how I still drive, even with my legs basically useless to me anymore (long story but yes this year they have got worse…no whining in this one though), but I glossed over one major detail. Despite the fact that I had been driving with the hand controls for almost four years, the government had never got around to actually sending me the notice indicating I needed to be retested for them.
I didn’t hide it. Every medical professional I met with was informed I had them. For some reason, the paperwork never went through…until about midway through June this year. Finally, I got the notice that I would need to be retested for my license due to “changes in my medical condition.” I only had a few weeks in which to do a vision test, the written test and then a full on driving test before my license would be suspended. Yikes!
So with huge thanks to Remo Minichiello and his company Drive Again, I got the latest version of the study book, found some online practice tests and began a quickie refresher. Remo mentioned to me that if everyone on the road were to be forced to do these tests today, probably 70% of drivers would fail. Don’t you doubt that for one minute. I know full well that a lot of the written knowledge I had done in my test, 20 odd years ago, was long forgotten. How many demerit points before you are called in for an interview? How many metres away from a fire hydrant do you park? What is the official distance behind an emergency vehicle you have to allow? Holy crap I have to know all this?
So I studied and rolled into the Downsview testing centre for the vision and written test. I give them great credit in that they helped out big time when they saw the reasons, making sure then got the vision machine tilted down to my level, and finding me a spot to write the test from my chair. Despite how bloody blind I am (remember I AM the definition of coke bottle glasses), I passed that part easily enough. Next though was what I was really nervous about…the written.
I mean seriously, two tests, one on rules, the other signs, and you can only 4 wrong on each. Get every one right on one, but 5 wrong on the other, you’re screwed. Now I did have an advantage. Since I was there due to medical reasons, I could ask for a retest immediately if I wished…and I wasn’t being charged for any of it. Dammit, though could you imagine the teasing I’d get if I failed…then failed again? No wait…I’d actually have to have admitted that…hmmm…just thought of that. In any case, I wrote them. After they first gave me the wrong test…somehow I knew something was wrong when the test started talking about walk around checks of busses. Ok right test finally…let’s do this.
Rules first. The first 10 questions, no problem, a few trick ones, pick the best answer, not just the right one, but easy enough. Then to page two. Oh crap. Four questions in a row. On the G1 and G2.
Now for non-Ontarians I should explain. We have graduated licensing in Ontario for new drivers. You get your G1, which I believe you have to be on for a year after doing a written test, then graduate to a G2 with a driving…and here’s the trick. I suspect I even got THAT description wrong. You see when I got my license the system was entirely different! I had something called the 365! You got it as soon as you passed your written test and in theory you could book your driving test the same bloody day. I never had to study anything about G1’s and G2’s! Oh crap.
Answered as best I could, went back to check the other’s, now paranoid as I was, before moving on to the signs portion. That was simple. A few trick questions, but to be honest if anyone CAN’T get 20 out of 20 on that part I’d be questioning them…especially after driving for 20 years.
Hand it in…roll back, nod to the others of various ages (very few teens surprisingly) and wait…and wait…and wait…you can’t even pull out your smartphone! It’s a testing centre! So you wait…and then finally your name is called. By the time you’ve figured it out. If they ask you to confirm your birthdate and address, you are good…if not…ack! Jason! Come up please….and can you confirm your address? Oh thank god! 3 wrong only. Damn G1!
Now comes the fun part. Seriously, do you even remember how nervous you were when you took your driving test? How old were you? 16? Did you wait a bit like me? Do you remember sitting in your car, waiting for the examiner to walk up, introduce himself and go over the rules? “First, I will never ask you to do anything illegal…”
Seriously, I was a 41-year-old man, more nervous than any day OTHER than my wedding day, with Mr. Silent as my examiner, hating the fact that I could call the guy “young”.
I made a stupid joke…and we started. And…I passed. As we parked, with Shannon waiting patiently for me, I had to resist doing a Kermit flail of joy before I had the car in park. Damn, it felt good to get that out-of-the-way. Though I did have to laugh as he told me what I had to “work on”.
Don’t reduce my speed when changing lanes (Ya, thanks bud I was being paranoid about freaking speeding!). Remember to check my mirrors more often (cause you know we ALL check our mirrors every five bloody seconds).
In all honesty, if I hadn’t done a quick refresher with Remo the day before, I’d have flunked it. From the tricky 30 km/h zone right at the testing centre, so remind me not to cut the lines on the on ramp…I’d have been toast. Seriously, though…30?? That’s just being mean.
With that…I passed. I get the little condition of “HC” on my license. One more challenge down.
On to the next.
I’m probably cursing it, but it appears, just maybe, that spring has finally arrived, up here in Toronto.It almost got into the double PLUS digits today and we’re down to only the biggest piles of snowplowed hills left. Hell, I even heard some birds earlier this week…they driving our Chinese Sharpei, Toby, nuts! With the onset of spring, we wheeled ones can finally start to look past our winter confinement…but that really isn’t the type of confinement I’m thinking of tonight.
A few weeks back, my partner Arthur sent me an article looking at the idea of some new cybernetic leg units that might one day help those of us with SCI’s to walk again. It’s an interesting concept that the sci-fi geek in me loves…but there was a term used in the article that struck me.
“it would help those confined to a wheelchair.”
Now, realize something here. I don’t usually worry about politically correct terms. I also know the media in general tends to overuse its metaphors and catchphrases and clichés for the sake of keeping things simple when they are on a deadline. This really got me thinking though.
The one place I DON’T feel confined is when I am in my wheelchair. Ever.
When I’m having to use my walker, and stumble along carefully to my car, off-balance, watching each step. When I’m having to use more upper body than lower body to climb four stairs. When I’m having to bum my way down stairs into my own basement. THAT is when I feel confined. (granted seeing my nephew Liam learning to walk down stairs and looking better at it than I have in years just makes me laugh)
My wheelchair is not confinement in any sense. In my chair, I’m quick. I’m agile. I can turn on a dime, make skid turns when at a good speed, use walls to help me take corners faster and dammit when the zombie apocalypse comes (oh come on, just go with it), just you remember something. You may have two good legs to run…but I’ve got four good wheels to roll on.
Are there limits to it? Of course. Stairs. Stairs. Stairs. The bane of all of us on wheels. Even then I damn well intend to get skilled at going down them at least. Heights? Well, thankfully, even sitting I’m still 6’2″. That makes me a very tall sitting man. While it’s better that I ask for help when stuff is too high, I can find a way. I make it work. Period.
The cliché of people with spinal cord injuries being confined to a wheelchair is another one of those things I never thought of before it happened to me. I’d be willing to bet, though, that just about anyone in a chair…manual or powered…doesn’t see their chair as their confinement.
It is our transport. Our tools. Our freedom to live our lives. It is NOT confinement.
Do I wish I could still bound up my stairs 3 at a time, like I could just 3 years ago? Of course I do. That isn’t reality, however. An individual can choose to see a wheelchair as something confining if they want to let it define them. The media though, needs to stop using that cliché to define all of us who use chairs in our daily lives.
I can still hope for those biomechanical legs…or even better the nerve regrowth that was recently linked to me as well. I won’t let waiting on it confine me though.
Now if we can just get ourselves caught up to our southern neighbours when it comes to being truly accessible. Tell you what oh USA…we’ll lend you the lessons of healthcare for the masses, if you’ll do the same with accessibility for the masses.
No, I couldn’t resist the Whedon reference. Also have a Bon Jovi song running through my head (10 points to the first to get it)
Here’s a question for you. Before reading any of my rantings, ramblings and inane scrawls (truly, you should see my handwriting)…did you give much thought to what it must feel like for a para- or quadriplegic? I don’t mean emotionally. I mean physically FEEL in those areas of their bodies that no longer function as they should. If you were anything like I was before my chaired life began, I made some terrible assumptions. I didn’t know anyone who was a spinal cord injury victim (I do hate that word mind you). SCI’s were stories we heard, inspirations in the form of Rick Hanson, the work by Christopher Reeve and his foundation, but it wasn’t all that often you actually met someone with an SCI. When I saw them, I just assumed that if they were a paraplegic, they had no feeling in their legs and the legs were just…useless…flopping without help or support.
Of course, that was naively wrong, but I didn’t have any basis to know otherwise and didn’t have reason to give it much thought. I always assumed that the damage to a spinal cord meant nothing went down to those areas. No feeling, no pain, no signals from the brain. Now obviously, I can’t speak for all cases, each is unique…but with my own, it appears that it isn’t so much that the signals stop. They just get very…weird.
Why do I bring this up? Two words:
Pain and spasticity. (and please, don’t make me explain spasticity…it’s exactly what it sounds like)
For almost 3 years (frak has it really been that long?), my body has been fairly stable. Weak, nearly useless right leg, stronger and stable left leg. Sure, I’d utterly ruined my right ankle in between that (read earlier posts on how that one happened), but things weren’t really changing much…just a slow steady decline in the bad leg. Things change though as literally days after my 41st birthday, my body decided to sneak many in on me…and not in a good way
Imagine waking up in the middle of the night, where for 3 years one of your legs hasn’t worked but the other has “behaved”, mostly obeying you. This time though you wake up and both of your thighs, thighs that haven’t felt anything at all during those 3 years, suddenly feel like they are burning from the inside out. You calf muscles are spasming so hard you can see the knots through the skin. The muscles are tensing so much your ankles are turning inward and it feels as if they are going to snap of their own accord. You have to reach down and manually push at your knees and pull at your ankles to straighten your legs, feeling them fighting against you the whole time.
Then go to your waking hours, where sitting they bounce of their own accord, straighten out at odd angles, or as my right leg is doing even as I type this, they jump and slam your heel down to the floor with a strength you didn’t think was left in withered limbs. You try to control it, to stretch the muscles, to work them at the gym, to move them, even to stand with help to get some weight on them. Sometimes it helps…sometimes not.
You can’t find a pattern. Nothing that acts as a trigger. No stimuli that causes the spasms. No movement that explains the burning pain. It just starts…and then…stops. No rhyme or reason.
Now, please know, I don’t write all of this as a “woe is me” cry for help. I’m seeing my doctors, working on the exercises and doing the treatments…and I must admit that it has helped to almost separate myself from my own legs…in my own head of course. I can look at what they do, almost as a detached observer…which is fair since my legs have decided to detach themselves from my own control. It is actually quite fascinating to ponder just how amazing the human body is, how much has to work in tune for all of our body functions to work as they are supposed to. I can sit watching TV with Shannon and watch out of the corner of my eye as my right leg decides to just start twisting…and wonder what caused that. Shannon only really blinks at it any more if I grunt from a more painful spasm. She’s been getting used to it. These new changes though…they are something entirely different.
Now before you ask…there are meds I take…wow are there meds I take. Depending on how bad the spasms are I take 3-4 different pills nightly. These help to calm the spasms and help me sleep, which in turn helps Shan sleep, which in turn helps to keep us both a little more sane. There are downsides to these meds, side effects that I don’t even want to ponder to other parts of my body…and they make waking up in the morning VERY difficult…and everyone knows what a wonderful morning person I’ve been my whole life. I wake slowly, and spend anywhere up to a half hour each morning stretching those legs out, working them around, depending on how they ended up as I slept.
It’s funny, as I used to sleep in the oddest positions. I found sleeping crosslegged, flat on my back, legs almost in a full lotus position quite relaxing back in the day. It freaked the hell out of friends who saw it for the first time. Now though, I can’t do it. Sleeping with my legs bent at all leads to terrible muscle pain when I wake…so now I find lying flat as a board is the best I can do…not the most comfortable, but the best.
And so my body changes. The doctors and therapists come up with new plans. I keep moving on with life and just making it work. There are options…some I plan to explore and experiment with. This post was actually prompted by another blogger I’ve been following by the name of Rachelle Friedman. If you are on Twitter, look her up, or take a gander at her facebook page. She has some great thoughts of living with a spinal cord injuries and recently posted a fascinating look at how medicinal marijuana shouldn’t be so hard to get (she’s in the States). This was after she wrote a GREAT article about the stupidest things someone can say to someone in a wheelchair. I was actually jealous I hadn’t come up with that one myself. That being said, I think I’ll be sharing my own thoughts on marijuana soon.
It was her open admission of the pain she deals with daily that hit home with me…and made me ponder it more deeply.
And yes I know. I’ve been damn quiet since just after Christmas, but let’s be honest… it’s been one hell of a winter. And really? Who needs to hear anyone saying that over and over again. It doesn’t matter if you’ve got a disability or not, this winter in North America has been brutal on us all. I freely admit, I don’t want to be whining about snow trapping me, or pondering those neat ski-style attachments for the front casters of my chair…I haven’t had the energy. Last week we got what I hope will be the last brutal blast of winter, the March lion roaring once more. It trapped me under orders from all to not risk trying to get out the door. So this got me to thinking…and realizing I do need to write…It doesn’t matter how many read it, or who reads it…it’s an outlet, an exploration, and an escape all of its own. So here’s to more to come.
Now don’t mind me going back to the ’80’s. One more time…with feeling!
FINALLY! Or as my Texan cousin textually screamed at me as if he was a spanish soccer announcer….CHHHHHAAAAIIIIRRRRRR!!!!
Well, in truth it isn’t really FINALLY. I’ve now had my new chair for about a month…and though I meant to write a blog before the holidays about it, compare it to the old one and explain just how vastly superior it is…the strangest set of holidays ever set in.
Did you hear the one about pre-Christmas ice storm that hit southern Ontario and knocked out power for days on end? Or how about a very VERY lucky trip to Miami that happened to land right between storms, so travel was adventurous but unaffected? Or perhaps the story of the homicidal bottle of frozen Diet Coke? Yep, life happened. So my thoughts on my new ride got delayed (insert jumbled brain joke here). However, on the good side, during that month, I have been able to run the new chair through just about every possible condition it will ever encounter. From snow, sleet, ice, slush, to Christmas shopper filled malls, salt and sand encrusted hills, to travel in a tiny turboprop plane, to a messed up United Airlines flight, to the heat of Miami, restaurant table checks, Florida downpours, a hockey game, an NFL game, casino soft carpeted death trap floors, and back to the frigid -20 C weather of home, the chair has had its trial by fire and ice in a shorter period than I ever expected.
And I have to say…It’s awesome.
Well, first, let’s recap. I’ve told you a bit about the chair previously (when it was still an on order pipe dream) and about my old chair, but let’s put them side by side, shall we? Or above and below each other depending on your screen size (seriously, get a bigger screen!)
So just what are the differences between these chairs? At first glance they might not seem so different, but as I explained in an earlier post, there a big changes between them…and not just in colour and manufacturer. You think choosing a car is tough? Wait till you see all the options on a frakking wheelchair! In fact, there are only three things that are similar between the two chairs. The seat cushion is the same (though thinner on the new chair), the rear wheels are Spinergy LX sport hubs (though again the new chair is different with larger 26 inch wheels) and the tires are Schwalbe Marathon Plus skinny tires that are puncture resistant, air-filled tires. That’s it. Everything else is brand new.
Now look I know a bunch of you probably glazed over all that but trust me….my mountain biking friends were salivating over the details and I can already hear them screaming at me “SKINNY TIRES! HISSSSSS!!!!” Trust me there are reasons for why I went for a tire type that I considered sacrilege back in my biking days, but I am sure we’ve already covered those.
The big difference is the actual frame and the backrests of the two chairs. The back rest is fairly obvious. It’s a MUCH lower one that only goes to about a third of the way up my back, and surprisingly is actually more supportive than the old one. It forces me to use more of my own core muscles to stay straight and isn’t much of a leaning back crutch of the old. Yep, that means that in just its normal use it forces me into better posture and to use muscles that I ignored for most of my walking life. Go figure.
If you look closely, you’ll see the foot plate is in a different position, which in theory leaves less threat to the ankles of people who don’t pay attention, but I’ve already proved that I can still ruin a set of Achilles tendons COMPLETELY by accident if needed (sorry Bruno!) The good thing is that it keeps my legs at a much more natural position and the balance is so much lower and farther back in the whole chair that it’s virtually impossible for me to be ejected from it. Oh don’t worry…this is me. I’ll find a way to do it somehow. Then post pictures! With luck though the lighter weight, yet sturdier Titanium frame will help prevent that. The ride is a bit stiffer, but the damn thing can roll over just about anything and the balance for popping is excellent.
Honestly, there are tons of other changes, from no longer having rubberized push rails, to the lower hand grips…hell even the colour! On the advice of a tech, I gave up my British Racing Green for polished titanium…makes it easier to maintain and scratches can just be polished out. Even the neoprene covers you see on the front legs help prevent damage and the cell phone holder just under the seat are cool. All of this isn’t the big deal though….the trick is…
I LOVE IT.
I know I keep referring to earlier posts but, it is AMAZING what happens when you get a piece of equipment done RIGHT. From the measurements to the materials…in one month this thing has been through every bit of weather we could ever get here in Toronto, let alone the travel, and it is amazing the difference. There is still a lot I have to learn as I continue down this para-road…yes I’m making that term up…so sue me…but at least now we have a chair we are confidant in. The irony is, if I look back at when I first got the original chair, I probably said the same thing.
So get used to seeing pics of me coming up in the silver chair, with Shan leaning down just a bit lower now…but hey…at least I can now sit at restaurant tables without taking my bloody knees out! Ok ok…they aren’t always bloody…and the coming pics will be better!
<insert accident prone Jason joke here>
Oh and once more…special thanks to Bernadette Millette for her assistance in getting me into this beast…and she hasn’t even been able to see it yet!
I hate diet coke. Always have. I can never get over the taste of aspartame, more specifically the horrid after taste it leaves like an oily carpet on your tongue. For years I have joked that it’s actually Die-t Coke…and have chuckled at all the recent news about how diet drinks really are worse for you then their normal brethren. That being said I do get that my diabetic friends have to put up with it and some even enjoy it. However, for all my gagging at the taste of it…this past weekend I finally got my comeuppance, some cosmic cola justice I suppose.
I would never have expected that justice to come in the form of a minor concussion, five stitches in my left temple and a winter coat that looks like I went through Valley Forge wearing it. So sit right back and you’ll hear a tale, a tale of a fateful trip…that started in a frozen garage, by the bumper of what wasn’t a ship…
I’m writing this because I left some cryptic messages on Facebook regarding an event that ended the holidays with Shan and I (with Arthur there for the first few hours) at Scarborough Centenary Hospital for 6 hours on a frigid snowing night. Wait for it…if you listen close you just heard the eyes of Arthur and Matt rolling as begin to relate this tale. Let’s see how far I can make them roll (bet not as much as mine were)
I tripped. I don’t know how, I don’t know on what. We had been careful, my friends had done as they always do when we get together…they made sure there was a clear path for me to walk with my walker to the car, they made sure someone was close to steady me…the whole gang has been so good at helping me with the adjustments to this when we go to their homes. Yet, somehow…I tripped. It wasn’t a big deal…I knew I was going down and I rolled with it, despite the walker getting caught around me…nothing hurt on the fall. What I didn’t see or know…was that my leg hit a shelf in the garage we were going out…and on that frigid night, up high on top, was a completely frozen 2L bottle of Diet Coke.
I never saw it fall, but I sure FELT it fall. Who knew that a frozen bottle of pop would feel like a concrete slab had just slammed into me. For the squeamish, skip this part, as the left temple was ripped open enough to need 5 stitches and I was knocked loopy, but not out cold. Really good winter coat ruined and soaked through and my friend’s garage floor coated with my red stuff. As I was stunned and Shan took over the first aid (seriously at this rate she should just get her degree in nursing too) we took no chances. Ambulance was called and within about 10 minutes they were there. My friends were great as we waited…and I am just sorry it upset the kids to see it…wasn’t possible to hide the pain as I was lying on a freezing concrete floor….
In any case, it was off to the hospital we went…and the EMT’s were amazing, two full-timers and one trainee, all with GREAT senses of humour. They were curious about my paralysis and I relayed the story on the drive, as Shan did the same sitting up front with the driver. Always funny to see the reaction of medical professionals to it. Needless to say, even though it was a head wound, the moment they knew of the spinal injury (I swear Shan it down in reporting it as if she’s memorized my medical files), they had me on backboard and with a neck brace on. Totally unnecessary but I understood the precaution…and suddenly I had a total flashback to being 17 and the accident that started this whole thing.
23 years later, the neck braces STILL dig into the back of your head, more painfully than the wound itself after about 30 minutes, and the backboards are STILL too short for anyone over 6 feet tall. There was Arthur again, making dumb jokes and promising he wasn’t taking pictures (which of course he was) but this time I had Shan with me. Keeping my spirits up as the frustration sank in….once more in a hospital…this time not because I did anything stupid (see destroyed ankle) but just due to a total fluke event. Once more I had to rely on my friends and strangers to render aid…for which I am more grateful than I can properly express.
So after 6 hours, in the early morning of Sunday, the last day of Christmas holidays, we finally headed home. I had stitches, that ruined coat, dried blood making wonderful hair gel, and vision swimming on the drive as the concussion set in. I have to throw a thanks to my sister-in-law Sharr and her boyfriend Chris for picking up Toby when we knew we’d be so late. Not having him going nuts as I stumbled in helped…and I ended up sleeping most of that Sunday…missed some damn good football dammit…ok one good game and one stinker.
So how am I now? Headaches pretty much gone, still drowsy on occasion, stitches come out in a few days and the world has stopped flipping on me when I sit up, lie down, or am in a moving vehicle. Funny how you think you can feel the earth actually rotating when the worst of those vision tilts hit. How the hell any athlete with a concussion can say “put me back in coach” I’ll never understand.
So there you have it…Diet Coke. My hatred of you now exceeds even my feelings about….Apple! (or as a certain Apple loving friend put it…at least I didn’t trip over and iPad!)
Now before the comments start to fill up! I have heard every single joke about hard hats, bubble wrap suits, bicycle helmets, and hermetically sealed bubble boy spheres. And they all STILL make me laugh at the craziness of what happened. So WARNING! Cause I can’t resist…that picture that Arthur WASN’T taking…I don’t think I look too bad but if you’re squeamish at all….say good night and have your chuckle. While I start a campaign about the REAL dangers of aspartame…and realize that all my years of bad mouthing diet pops (soda for your Americans) finally came back to kick me head.
That has to be a variation on the second most commonly asked question I get. Well come on, the MOST common question is fairly obvious don’t you think? I now have a host of interesting stories tell on my next vacation when that question gets asked over and over again…believe me the real story gets kind of boring after telling it so many times. So then what would be the less obvious second most asked question? Most often it occurs when someone asks if I need help loading the chair (and no that doesn’t count), or when they see me wheel up to the driver side, while Shannon gets in the passenger side.
“Excuse me, I hope you don’t mind me asking…but you’re in a wheelchair…how do you drive?”
This always makes me laugh when I hear the question asked, usually with that apologetic tone of “I really hate to ask this, cause I don’t want to embarrass you or me but…I’m too curious not to ask…” I never hesitate to show off how it works, though, partly out of being proud of the simplicity of it…and partly to show that we disabled CAN still be independent. It’s important to show it off given that the question invariably is asked with a degree of uncertainty and amazement. I have to say, that all I am about to show you and tell you comes from an amazing source. Shan’s teaching partner is married to a gentleman by the name of Remo Minichiello, who runs a company called Drive Again. It specializes in helping people with disabilities modify their cars, vans or trucks to allow them to drive. He has been able to assist with everything from a partial para, like me, to full on quadriplegics. That’s right…you don’t know it, but you’ve probably been on the road with a full on quad driving beside you. And you needn’t be one bit scared of it. Drive Again helps with the tech, the training and the licensing, and I can’t recommend or thank them and the Minichiello’s enough for their assistance with this.
Ok with that out-of-the-way, how does it work? Well, forgive the bit of shakey pics in some of below (that explanation may be coming soon), but once more, bear with me reader and enjoy the ride.
The system works on a simple handle and lever system that attaches to the brake and accelerator on the car, without ever interfering with their normal operation. Shannon can drive my Dodge Journey without ever touching the hand controls (she’d NEVER do that of course) and they are installed permanently. That is the one downside, in that we can’t just take them out on a whim and put them in another vehicle. I know, I know this is confusing, so let’s show you those shakey pics.
On first glance the steering wheel might not show you a lot but look closely. You’ll notice a knob attached to the upper right of the steering while. This is the same type bus drivers often use with their extra-large steering wheels, but in my case it’s because I can only use one hand to turn the wheel, so I need something that assists with those full 360 degree turns that won’t leave me fumbling with only my palm on the wheel. It simplifies the process of spinning the wheel and it can be removed when Shan is driving, so it doesn’t interfere with her operation. And yes if you look really close at the pic I was enjoying some classic Alice Cooper as I was taking those pics…so there.
The reason why I can only drive with one hand is found to the left of the wheel, with that strange vertical handle off to the side. I’ll explain that in more detail soon, but that is both my brake and my throttle for the accelerator. You can see two rods below the steering wheel that lead down to two pedals. Wait, what is that you say? Accelerator and brake with one simple handle? Yep, it’s that simple. More pics you say? Ok here we go!
It really is that simple. I’ll be honest, if somehow my legs ended up going back to normal I’m not sure I’d want to go back to the normal foot controls. It is such a relaxed and easy way to drive that most of my friends who have tried it want to use my car for long distance trips (Arthur!!!). Now keep in mind that while it is simple in theory, it does take a bit of getting used to. Inevitably when you are first learning to use it, you’ll suffer from muscle memory on the first emergency brake (even when your legs don’t work, you still try to brake with your foot). Reversing can also be a bit confusing at first, as you still have to twist in one direction and brake the same, even when going backward. It is really amazing though how quickly it becomes natural. I first had these controls installed in my 2005 Pontiac Vibe and then transferred the exact same controls to the Journey in 2011. These are, obviously, some of the simplest controls. A full quad needs a MUCH more complex setup that looks almost like a setup you’d find in a fighter jet, but it is just as responsive and safe as normal controls…probably even more so. It is amazing to see quads who can drive with just a few fingers.
There are downsides to it of course…since both hands always have to be on the wheel (which is how we are ALL supposed to drive…RIGHT?!?!?), it can be a challenge having a snack or drink, but it does pretty much preclude using any mobile devices. That sound you hear in the background is Arthur, Bruno, Matt and a few others snickering as they know the tricks I’ve figured out to get around all that…but that isn’t something to post here…cause I would NEVER drive one-handed…nuh uh!
Having these controls has been so important to me since the legs started their downward spiral. It meant I could still have my independence, my freedom and my job! I can still drive to the office on my own, to client, I can shop, I can live life with some semblance of normalcy and not have to rely on Shan or our families to take me everywhere. Without it, I wouldn’t have been able to continue my work and I’m sure by now Shan would have strangled me (with a proper plan executed with the assistance of ALL my friends and family, there would be alibis galore!). I am extremely fortunate that I am able to do this, and we know that more mods will come in the future. The Journey is great for loading the chair without having to put down any seats, but it loads in the back, not the side. That may turn into an issue down the road (awww so punny) but we’ll cross that bridge when it lowers…ok honestly, I’ll stop.
So there you go…how does a para or a quad drive themselves anyway? Quite well thank you very much. I always do love showing off these controls…and proving what we can do when you have the resources available to you. And if you know anyone interested in this type of setup, contact me and I’ll get you in touch with Drive Again.
Haven’t written in way too long, even though I have about four posts in the pipeline…the combination of autumn ills, work silliness, exhaustion, new drug combinations for muscle spasms and about every other excuse anyone who likes to write has ever come up with NOT write, has forced me to start a post with a massive run-on sentence as I was seeking some inspiration on a night where I was irritated with the world.
Ok…pause…breathe. There that’s better, no matter how many rules of the english language I just broke.
I do enjoy writing…of any kind…and I need to do it more. Writing isn’t easy, you put a part of yourself and the people you know and love into what you write. Doesn’t matter if it’s fiction, non-fiction or a random blog rant that barely anyone will read. You put it out there for the world because you want to. Sometimes though, you find yourself needing something special to get you back into it, to get you over the day-to-day petty silliness that can overwhelm anyone (forget my frakking bad legs…I don’t have it any worse than anyone else).
Then tonight, in my random wanders online, I came across…this. Do yourself a favor, set it to full screen, turn up your volume, turn off your lights…and enjoy. It’s not science fiction. It’s not special effects. It’s not faked.
It’s life and it’s our world. And it’s amazing. Bloody well enjoy it!
Something like this makes me forget the Rob Ford’s, the idiot Black Friday shopping madness, the even more idiotic clients who never listen…and remind me what an amazing place we live in. Call me naive…but as I recently heard our own Commander Hadfield say (and I’m paraphrasing), we all live on this world…we’re not all that different. Now I’m going to go back and watch that again…and then start back to some writing.
Kudos and full credit to David Peterson for the editing and astronaut Don Pettit for the images.
Yep, there goes Jason, making up another word. I do that quite often when I can’t find a real one that fits what I’m trying to say. This one has been on my mind for a while, but events of late have brought my frustration with this to the fore…and its tough to discuss without this sounding like a bloody pathetic whine of “feel bad for me!”…but bear with me once more, and I’ll ask my sympathetic family members to hold comment on this post…this is a rant that I expect will have holes I could drive a truck through.
I’ve said before I am not offended by the term disabled. It is what I am. I don’t wear it as a label, I don’t buy into the “alternate” terms you see out there that are more politically correct. It is a reality. Over the past three years I have become disabled and, in all honesty, things are still going downhill, rather than levelling off. My friends see it, my family sees it, my wife sees it…and I just tend to try my best to ignore it and soldier on. Not always successfully. The soldiering on though, so to speak, is important to me. I need to be able to be independent. To work. To travel. To do as much as I still can, and even as my legs degrade more, to keep pushing what I can do. It keeps me sane. It keeps my love and marriage to Shannon strong. It keeps her from throttling me (ok she still sometimes wants to do that). I earn my way. I don’t need public assistance. I don’t need welfare. I am a productive member (if occasionally lazy) member of society.
I am able-disabled.
Now as I say that, please realize I don’t for one minute criticize ANYONE with a disability who isn’t able to be as independent as me. There are those who are MUCH better at this than I am, and there are those with their own unique issues where it just isn’t possible to add that “able” in the same way. One thing I have learned (and hell I may have said this before, I’ve lost track), every person’s illness, disability, crisis in their lives is unique to themselves. It is the worst thing that has happened to them and you CANNOT compare it to yourself or someone else, be it in their reactions or their situations. Everyone is unique. Everyone’s situation deserves respect for its uniqueness….this is something I’ll expand on another time perhaps before I get too far off track (once more…TOO LATE!)
All this leads up to my frustration. The world sure does make it hard for the working and independent disabled to make their lives a bit easier. Confused yet?
I help run a small business. We do ok, but we aren’t yet a grand success. Things are improving, but its the struggle of any small business and it places us squarely in that “middle-class range”. My wife is a teacher and combined, we do ok. In fact, if it wasn’t for my disabilities, we’d probably be more than ok. However, with any disability….there are costs to them. It doesn’t matter if its MS, Parkinson’s, amputations, stroke or an SCI (spinal cord injury). Life after requires a lot of changes…modifications…and they don’t come cheap. Wheelchairs, power scooters, ramps, safety rails, renos to homes for larger doors, turn radiuses in bathrooms, the list at times seems never ending. None of it comes cheaply. The moment the term accessible gets added to anything, the price goes up immensely. There are programs that can help with all of these, but over time we’ve discovered a major issue. If you are disabled and you work, and you make a decent living…you can’t qualify for just about any of these.
So what you say? If you make a decent living, you should be able to handle such things. I used to think that too. I thought we had prepared. We quickly learned that despite your best efforts you can’t be prepared completely for something like this…and as I discussed with a friend today, at times the systems seem to almost punish the disabled for actually working and being somewhat “able”. You make too much. You’re not quite disabled “enough”. No one WANTS charity…and to be clear, I have an INCREDIBLE support network in friends, family and even clients who have helped in more ways than I can list. I’ve been humbled by family who’ve helped modify entries, and friends who have literally carried me in and our of homes on their backs when my legs are at their worst. I am lucky to have it all.
Tonight, I just feel the frustration of, at times, feeling punished for being active, for being self-sufficient and for being able to LIVE. Maybe it’s not fair, maybe its whining on my part. If so, I beg the rare indulgence from those who enjoy my rantings…I don’t do it often…and hell perhaps I should do it more often. I don’t like doing it though…anymore than I like being dependent period. So forgive this whining tonight. We’ve had reason to be frustrated of late…and tonight I needed to vent. And yes, this was prompted by some news I won’t get into now…just frustrating news indeed.
More positive rantings to come!