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!
It seems like I have a host of stories from our cruise this past that I haven’t had the energy to blog about, but this one I have been purposefully holding back and you’ll quickly see why.
I’m getting a new chair!
I wrote a post a few months back about GI Joe! No wait…it was about knowing being half the battle…no wait…about how different a chair I’d have if I’d known more 3 years ago. That was it! Well go figure that just a short while later, events would conspire to let me prove that knowledge can be a great thing. To keep a long story short (TOO LATE!), on the return flight from the trip, my chair was damaged in cargo. Shannon met my chair as it was pulled from cargo and put on the ramp and she immediately started waving at me that something was wrong. Once I made it to the chair, it was obvious there were major issues. The backrest was bent out of alignment and the arch of the frame going from knees to front wheels had been bent inwards. It took a while to figure out, but basically the front wheels were several inches closer to the back wheels then they were supposed to be.
I could still use the old chair, but had to be very careful on hills or any kind of rough terrain. The mistake of the sizing that had my weight too high and far forward was now compounded by the damage.
Now as Shannon has often said, this isn’t specifically the fault of the airline we flew with, WestJet. They aren’t the ones who load the luggage, that’s whatever company is hired at any given airport, including Toronto Pearson. We don’t know what caused the problem…all we can guess is that someone put something heavy against the chair and weight shifted midflight…all that mattered was the chair was damaged. We give full credit to WestJet on this, as they very quickly got us the information we needed to make a claim, and I heard from a rep at their head office within a day. The irony was that I was scheduled to go for a visit to a seating clinic at Lyndhurst Rehab Centre just two days after we got home. Before I even went to that appointment, Westjet was arranging for an assessment of the damage and starting the process for replacing it. They were open and honest and I give full credit to the rep, Lori, for all her help and support in pushing this through. It was complicated, a lot of paperwork had to be just right due to the value of the chair, but she helped guide it through and all is good.
With that, it meant we could start looking at a much better chair than my first, so the timing for the appointment with the seating clinic at Lyndhurst was perfect. Ironically, they took one look at the old chair and didn’t want to let me roll back out in it, given how bad the shape of it was. However, in short order I was being measured up in the ways I never got the first time around. Thorough and precise doesn’t even begin to cover how much better this time around was. We’re going with a different vendor, chair brand, everything except the seat cushion, where I am sticking with my Ride Forward cushion.
If you are curious, here’s the site of the chair vendor: http://www.tilite.com/chairs_zra.php# and the exact chair model.
We are doing full Titanium this time, lighter weight and sturdier for travel. In fact, the picture is very close to how the chair is going to look, colour-wise, though with a different backrest and cushion. One of the techs for Motion Specialties (the company we are using to get the chair through) recommended that given how I use the chair, I should avoid a custom colour. Many of you might recall the post I did ages ago about the first chair and how proud I was to get it in my British Racing Green. Somehow I thought customizing the chair would make it more “mine”. In some ways this was true, but it also had the drawback that within six months I have scratched the paint job pretty badly. Going with the polished titanium means I can polish out scratches with a brillo pad if need be. I really had a debate on that one in my head, as the tilite website has some very cool tools for customizing colours, right down to even tattooing portions of the frame.
For once though, the 40 year old adult in me (see practical side) overcame the teenage geek that normally wins.
We made a few other changes that I’ll get into once we get the chair and I can illustrate them…but in the meantime, Motion Specialties has loaned me an older version of the chair that is leaps and bounds superior to my old Quickie Q7. It’s amazing how a chair that is better measured works. We can’t wait for it to arrive and its due around the beginning of December. Yes, the irony that I am getting it just as winter is hitting isn’t lost to me BUT…there is a trip to Miami coming up, so it is going to get its travel wheels under it quite quickly.
There is my bragging for my first post in a while. Much more to come and I have been requested to post some videos of the chair in action…we’ll see what we can do.
Since getting back from out summer cruise, I’ve had one buggaboo in my head…and this late cool night in early autumn I feel a need to “discuss” it. I’ve been pondering how best to discuss it without actually offending anyone. I know I know, since when do I give a rat’s ass about offending anyone? Well let me see if this can make some sense. Here’s the gist of it:
Just because my legs don’t work, doesn’t mean there is anything wrong with me.
You see, when Shannon and I go on trips I tend to be a very chatty person. I like meeting new people, hearing a bit about them and inevitably, I get questions about “what happened”. The chair is a bit of a magnet for that…and it helps that I don’t mind telling the story. I had actually meant to use a bunch of alternative stories on this trip, for my own amusement and to make Shannon shake her head at me, but I never really got the chance. I did meet some wonderful people on this past trip. A gentleman from Bermuda, who was in a chair due to a broken ankle, there on his anniversary, who knew Toronto well, having boxed here in his youth. A couple who took pictures of my doing my ziplining (more on that later) that were there with over 20 family members for their parents’ 64th wedding anniversary. Our amazing server, Sochuila, from India, who had only been on her current contract for 2 weeks of a 7 month tour of duty where she would get no off days at all.
Then there was William. Yes, I recall his name…because of what he tried to rope me into…at least what it appeared he tried to (and this is backed up from the experience of my wife and friends on the trip). A 60-something-ish “pharmacist” from some southern US state…who took a very deep and decidedly creepy interest in me and my “condition”. The experience of this guy…I hesitate to say gentleman…really made me ponder how some people see those of us with disabilities…that somehow we are a project that can be cured. Bet you are even more confused now. Let me roll back to the beginning. I just wish I still had the guy’s business card.
Shannon and I met William by pure chance on about the third day of the cruise. He and his wife were on our deck, same side of the ship, though thankfully not all that close to our actual room. They used the same elevators that we did though, which is where he caught up to us as we stood in what became the normal dinner time convergence on the elevators at our end of the ship. On the back of my chair, Shannon has a backpack that has gone on just about every trip she’s ever taken, even before she knew me. It had a little badge with the Canadian flag on it. We hook this bag now on my chair to carry our various sundries…and of course it automatically identifies us…as if the chair doesn’t remove our anonymity as it is. With this in mind, I quickly, somehow became William’s Canadian friend on that elevator trip. I didn’t tell him too much, just that I had been in the chair for about two years and it was due to nerve damage from a spinal cord injury. At the time….nothing seemed too odd about it…if perhaps he was a little on the overly enthusiastic side to know the details.
It was the next day that things got…odd…and where I started getting annoyed not just with him…but with the knowledge that there are people out there with a very strange view of how those of us with disabilities might be “cured”. The next day, we met him again, in a crowded elevator, heading down for dinner. Despite being on the other end of the elevator without 5 people between us, he made sure to reach across and hand me a business card, saying that he thought the website on it might be a big help to me…and feel free to ask him anything about it. I took the card with an awkward thank you, trying to avoid the curious glances of everyone on the elevator….but the moment I looked at the card I had to groan quietly.
One side of it had a design I’ve seen many times as a very cool tattoo. The words Life and Death, merged in script so that if you read it one way, you got one word, and the opposite when you flipped the card. Ok….interesting. The other side was what got me groaning. A biblical quote…and this is where I wish I still had the card so I could repeat the quote…but what really caught my eye was the website…something about ending recidivism.
Recidivism? Huh? Confused the daylights out of all of us as we discussed it at the table…after all isn’t recidivism normally about the rate of recurrence of criminals repeating their offences and going back to prison? Well that was what I thought. Of course, we were on a cruise…and I wasn’t about to spend $50 a day for crappy internet to look it up (or go searching through the library for a dictionary. So before I continue the story I should get that definition of recidivism that I looked up the moment we had wi-fi off the boat. According to the Merriam-Webster dictionary it is: a tendency to relapse into a previous condition or mode of behavior.
I was still confused…but it began to get a bit clearer that something was up in the following nights. First, there was the sudden invitation to join William and his wife at their table as we wheeled by….despite the fact that we were obviously dining with someone else. The utterly confused look on my face must have been hilarious, but Shannon saved us from that one. Of course we almost ended up sitting beside them at the small comedy club we hit that night (blood hilarious mind you…6000 passenger boat, 90 seat club). We found a back corner to try to be as hidden as possible…which really isn’t possible when you are a 6 foot 2 inch man in a wheelchair. Somehow we managed it. The kicker though took place on the second last night, a formal night in the dining room when William decided to shout a question at me as I was wheeling in on my own to our table…”Say Jason! How long ago was your injury?”
Yes…shouted…across the dining room. I think I pulled off a somewhat incredulous look with a reply dripping with sarcastic scorn…at least that’s how it sounded in my head, “Ummm…years ago?” as I then turned my back and rolled away. Witty eh?
So beside being rude as hell…what was the point? Well it turns out, that there is a thought among some “medical practitioners” with a bit of a religious bent, that certain disabilities can be cured or mitigated if only you embrace attitudes and habits you have that are causing the issue. So in essence: through a combination of prayer and behavioral therapy my partial paralysis might be “cured”. This is what incensed me. While anyone with any disability hopes for a medical cure, be it cancer, Parkinson’s, MS, or spinal damage just to name a few, We don’t need to be treated as if it is out behaviour that is the cause of the problem. Sure our behaviour may have gotten into the problem (see riding a bike without a helmet), but nerve damage isn’t going to be cured by prayer and behavioural modification.
My legs might not work…but dammit there isn’t anything about me that needs to be cured! (As Shan might disagree about my geek factor, but that’s a whole other issue)
Before I get too deep into this rant, I should clarify something. My religious beliefs, or more specifically my lack thereof, are well-known. Both sides of my family know it, Shannon knows it…but they know I respect theirs. Many prayers were made during an after my surgeries on two continents, and I hugely appreciate the good will and best wishes that came from them. The knowledge that so many people cared really did make a difference. But to be blunt…prayer isn’t going to fix my legs. Sorry, but that’s my personal fact I live by. Science will hopefully give me some relief sometime in my lifetime (cough stem cell therapy cough). But I don’t need to be “cured”. I have seen an amazing amount of disabled people who are strong, powerful members of society, who contribute to their families, friends, their work, their lives. They don’t need to be cured of the “recidivism” that supposedly contributes to their disability. They need the support of their loved ones, they need to be treated with dignity (ok that one sometimes gets stretched by best friends) but they need to be treated as just normal human beings.
They aren’t projects. They aren’t something to “cured”. It’s hard to express how much this pissed me off that someone would just pick me out of the blue like this and be so bloody uncouth about it.
We/I have had a life changing event that we are still adjusting to. We hope, that in time something will change in medicine to make things better. But out attitudes, our habits, our lives, don’t need to be cured to fix the problem.
Not sure this rant truly made sense, even though I’ve edited it about five times, so I’ll end with the best quote out of it. It was one of two Matt’s…Kean on the trip with us, or my cousin Kendrick from Texas (sorry guys I can’t remember which) who asked: “What would he have said if you were an amputee?”
Something to think about. And yes, I know full well I could be overreacting and not understanding this recidivism movement…but this experience with it…well…nothing much would change my mind about it now.
Really you don’t want to hear that. Seriously. As much as I love “Stars” and “Bring Him Home” even I acknowledge that my shower singing voice for them is TERRIBLE. So I kept the urge in check this past weekend when my wife and I had the joy of seeing the return of Les Miserables to the Princess of Wales theatre. It was quite amusing though to see how many couldn’t resist their own renditions during intermission.
I should mention that Les Mis has always been a favorite of mine and Shannon has seen it once before, but my brother decided to treat us to tickets for this new travelling production for our 5th anniversary. It turned out to be an incredible show, and despite the fact that we had both seen it before, this production was all new, with staging redone and a very different, grittier tone to the production. I suspect there are many things that influenced this, including the recent movie, but let me back up a bit about the staging.
If you ever saw the original show, you may recall that is made heavy use of a specialized turn-table style stage. It allowed the cast to move around sets that rotated, or to be moved around the huge stage as they sang. At the time it was quite revolutionary (pun intended) and made for quite the spectacle in the original production. You couldn’t forget it. This time around they have taken that away and moved to using a projection screen, with images both by Victor Hugo himself and inspired by him. That with the new sets, created a more intimate and smaller stage setting. It didn’t take away from any of the spectacle of the sets or the performances, if anything I think it made them more powerful. The death of Javert wasn’t as abstract, with just a swirling light hinting at water beneath him…this time he “fell” back into the screen, swallowed up by it in an amazing bit of stagecraft.
This also brought home how much better the action and performances seemed. Perhaps it was because it seemed to be on a smaller scale, but “Confrontation” between Javert and Valjean was once just the two of them stalking the stage while singing that amazing number at each other. There wasn’t much actual “confrontation” the first time I saw it…this time though, the leads truly fought, with manacles slapping stage, choking out Javert before a chain wrapped fist allowed Valjean to escape. As I said, this production is much grittier and felt more….real. I won’t spoil all of the changes and action but it goes through the entire show.
I suspect that a lot of this was influenced by the recent movie, even though this travelling production was in the works before the movie’s release. One of the big points of the movie version was how raw the singing was, not pitch perfect Broadway style that Les Mis and pretty much all musicals are. The actors were allowed to add their own pauses, and moments of actual acting, where perfect singing might not work. That could definitely be seen in this production, though to a lesser extent. It worked well…and yes Valjean and Javert were amazing. I didn’t know the actors for them, but they hit their songs perfectly…without any of the “Russell Crowe taking me out of the movie” issues…I had no real issues with any of the cast, though I have yet to ever see a Marius that I ever really like…and once more Eponine stole the show.
If you have never seen Les Miserables, you owe it to yourself to try to get tickets for this limited run. If you HAVE seen it, you still owe it to yourself. The sign of any good musical is when you find yourself humming, or outright singing the songs of it the next day. I remember this was one of the reasons I disliked the Lord of the Rings musical all those years back. For its amazing stagework, choreography and even acting…the music was utterly forgettable. Les Mis stands the test of time giving you songs that both raise the spirits and break the heart…sometimes all at once.
As a side note, since this is the Geek on Wheels, I should note that its obvious how the Princess of Wales theatre was built with accessibility as an afterthought. They do their best, but it is far from an ideal setup for anyone with issues, let alone if you are in a wheelchair. Shannon and I ended up in seats right down in the orchestra section, barely ten rows from the stage, but at the far end against a wall. Two seats had been removed, in the theory that people in wheelchairs could sit there, with a huge space behind us. They brought Shannon a wing back chair to sit in and I requested the same since I could transfer, so that made the show a bit more comfortable. The most telling issue though was the amazingly steep slope that you had to walk down from the entry doors into the actual theatre. It is at an odd camber as well which made getting back up it quite the challenge. They do their best, but you can tell that a theatre built 1993 really wasn’t taking accessibility into account. It’s unfortunate given what an amazing venue it is…but perhaps the recent news that the theatre may soon be torn down and replaced will improve things for the disabled…it’s still a shame though.
Seriously….go see this production. If you enjoy theatre or musicals of any kind, this staging of Les Mis was one of the best I’ve seen (minus Colm Wilkinson of course). It made for a fantastic anniversary gift that Shannon and I will treasure…and that my parents, my brother Michael and his SO Priscilla loved. Thanks again for it little brother. The Lion King’s return is going to be on us.
If you grew up on after school cartoons like I did, then you know that quote all too well. G.I. Joe (not the rather silly movies of today of course). Each episode would end with some lesson to the kids, telling them that knowing was halfway to a goal, or an understanding. For a lesson from a silly animated series designed to sell toys, where the animation was pretty terrible and the stories mediocre (and yes I loved it)…it was rather deep. Knowing was half the battle.
Looking back at my riding days, I can recall the first mountain bike I bought. Not that ancient, bright yellow, skinny tire, ten-speed that I went head over heels on…that bike died in the accident when I was 17 and turned into the start of a very long journey…we’ve heard that story before. No, the first bike I got was one from a very good bike shop in Pickering, Ontario…and for the life of me the name of the shop is eluding me right now. I’m sure my buddy Bruce could fill that in. I thought I had done my homework at the time, which consisted of just looking at bikes at a few shops and not wanting to spend too much money. Having no real clue what I was looking for, but knowing I was on a budget. I ended up with a very simple Davinci bike…hard tail, simple front shocks,, V-brakes, the simplest of gear systems…the only change I made was “upgrading” the saddle to a gel-filled saddle that I thought would be easier on my tush.
Strangely, one week later, my friend Bruce bought the exact same (if slightly smaller) bike. Shows how much both knew….but then again Bruce’s first attempt at mountain biking was on a Canadian Tire special with no shocks and he completely torqued the rear tire in the first half hour…so really…what did we know? Granted, those bikes did last us about two years, where we honed our skills and got better at biking, trying more challenging trails as time went on, pushing those bikes beyond their limits. I didn’t realize that despite my being 6 foot 2 inches tall, the bike I’d got was way too big, my centre of gravity too high, the brakes were terrible and the gears nearly impossible to change when hill climbing. So in time, we used those lessons, and for both of us, our next bikes were major improvements.
Ok, Bruce’s was a major improvement. Mine WOULD have been if I hadn’t made the mistake of buying one with a brand new hydraulic disc brake system that kept crapping out in the middle of a ride…but it was still a better, and more expensive bike. Experience had taught us both what we better needed…well that and necessity after someone *cough* threw his bike into a tree. But that’s a whole other story.
That second bike of mine got some major overhauls, the brakes redone, the crank replaced, and by the time my legs made it impossible to ride, the frame was the only original part that on that bike. I never got to do a third. Thankfully, Bruce did…and seeing the look on his face when he got his dream bike for his 50th birthday was something I’ll keep in the back of my mind for a long time. The lessons learned, the knowing, not only improved our skills, but improved our equipment.
I bring all this up because it’s funny how relevant it is when it comes to wheelchairs…and also to the resources available to you when your life takes a hard right turn that you don’t expect. So once more bear with me as I back up and tell this tale.
Back after the last surgery in 2011, when we knew our world had changed, Shan and I knew NOTHING of the road ahead. We knew nothing of the challenges of being a para, of the changes we’d need to make, of what a wheelchair should be. We went to the rehab hospital that happened to have a bed free…which in hindsight was a mistake. I lay no blame on the rehab staff there…but my time there was not a lot of fun and as the only spinal cord patient on the whole floor, being at least 20 years younger than all but one other patient….they were grasping at straws to properly rehab me…in the same way that I was grasping for anything I could to figure out what came next. We didn’t realize just how bad this was until very recently, when we had an appointment with a rehab hospital that we SHOULD have gone to. That’s another tale to tell…but where this one goes is to the wheelchair.
When we knew that this was going to be needed, we had to convince the rehab people there of the reason for it. It didn’t take much, as our arguments were quite logical…and once the decision was made, they started to set us up with someone to help choose the chair. The staff was actually excited about this process, and trust me so was I, it broke the tedium of rehab, because they didn’t normally get to do the types of chairs that I was going to be getting. They were used to doing…well let’s be honest…old people’s chairs. Transfer chairs, foldable ones with seats made of nylon or just a bare cushion. Not a chair meant for someone active, working, who wants to travel and still adventure. So we went in as blind as the staff as to what a proper chair should be.
I don’t blame anyone really…how could we have known? They gave us four different chairs to try, all of different makes and models, more seat cushions than I could count and different back rests for each chair. Eventually, I made the decision based on which frame felt most comfortable, which seat seemed to as good, and which backrest would be the most weather proof. Yep weather proof. Come on, we live in Canada, I wanted something that could handle getting soaked and dry quickly…it seemed to make sense to me. So some bare measurements were taken, I was given a temp chair until the actual chair was custom built…and then that fiasco began (it took them 4 delivery attempts before they finally got the order right). Things seemed good. I started to adjust to life in a chair…at first quite oblivious to all the mistakes we had made. There is actually a posting I made, quite proudly showing off pictures of my chair, in its custom British Racing Green paint finish…showing it off as if it was my new mountain bike. I was actually quite proud of it.
It didn’t take long though to realize we had made some mistakes.
The chair was too tall, the main wheels not large enough, the seat cushion too thick, my centre of gravity way too high, I was too easily ejected from the chair hitting the slightest of obstacles (which admittedly was part of my own lack of skill as well). My own lack of knowledge, along with the lack of knowledge of people who weren’t experts in spinal cord injuries, left us with a chair that was…adequate…at best.
Flesh forward to a few weeks back, when I finally get an appointment with the seating clinic at Lyndhurst Rehab. Lyndhurst is a place I should have been to years ago, a place that specializes in spinal cord injury. In five minutes of sitting in a waiting room, we collected more resources than we had found in the two years previous. In the appointment itself we learned just how bad the chair was for someone of my height and needs…then we also got confirmation of something else…the chair was broken. The when’s and how’s of that I can’t get into right now, but it’s being dealt with. The gist of it all is…I’m getting a new chair, sooner than later I hope.
This time though is going to be very different. The people helping to get the chair know more, they measured me in ways that were never done. The company we’re using specializes in manual chairs. We’re getting the wheel sizes right, the seat cushion, the height of the chair….this time we know more and we’re dealing with people who know what they are doing. It’s going to be a chair where the wheel isn’t higher than the seat, and where I can actually fit my knees under the average table without adding more insult to injury.
Experience teaches. Finding places that can give you the information you need helps. And as that cheesy afternoon cartoon taught me as a kid: Knowing is half the battle.
(and yes…pics of the new chair will come…and more on that story to come later as well)
If you watch Discovery channel at all (you know before their latest Shark Week fiasco) you may have seen a show covering the construction of the Oasis of the Seas, a Royal Caribbean cruise ship that was, at the time, the largest in the world. Last week some friend, my wife and I got the chance to cruise through the eastern Caribbean on its sister ship, the newest biggest ship in the world, the Allure of the Seas. Yep, by all of 5 inches, it is the biggest cruise ship yet.
And let me tell you the thing REALLY is a monster. If you’ve never seen or heard of it, go take a look at it’s website, so at least you can have a bit of perspective on the scale of this. Then understand that no pictures, video or description can really take in how big this thing is.
This cruise was leaving from Ft. Lauderdale, Florida and hitting the Bahamas, St. Thomas and St. Maarten on a seven-day cruise. Now, this was going to be our third cruise, and second with Royal Caribbean, so you think we’d have this all down for the travelling with a wheelchair…but it is amazing how every trip offers new adventures in wheeling that you never expect. This was the first trip we were taking with no walking aids at all, no canes, no walker, just the wheelchair…so how does the world’s biggest cruise liner hold up, let alone three island ports?
In short? The ship was amazing. The ports? Eh.
I should start a bit earlier though, as we flew down to Ft. Lauderdale a few days earlier via a Westjet flight. This was our first flight since the chair has become the primary means of movement for me, though we had flown with the chair before, it had always been with walking aids to help while on the flight itself. A relatively short hop to Florida seemed the best test of future longer travels…and imagine our joy at discovering that all Westjet flights do come with aisle chairs onboard to assist with moving around during the flight….I won’t elaborate more than that…use your imagination if you wish, but that knowledge certainly eased our minds.
We spent a few days in Ft. Lauderdale before the cruise…and that was an experience worthy of a post all on its own. Let’s just say that southern Florida really is a culture unto itself. We were quite glad that it was just a stopover in our trip and not the destination itself. We had found (by we I mean Shannon of course) a hotel that we stayed in the Sat. night and then shuttled us to the port on the Sunday morning, allowing for our travel partners to keep their van parked at the hotel for the duration of the trip. I can’t recommend doing this any higher if you are planning on taking a cruise like this. Don’t rush yourself trying to fly in on the same day as the cruise. Get in a day early, and find a hotel with shuttles to the port, it makes life much easier. Just be sure to place luggage tags for the cruise on everything, even bags you intend to carry on. We learned that lesson the hard way a year ago.
Enough of that…what of this ship?
I really can’t say enough about it. We had been on another Royal Caribbean ship, the Enchantment of the Seas, which was a slightly older ship and about to go in for a major refit. It had been impressive, if more intimate in its size, but still quite accessible. The Allure take everything to a completely new scale of size, events, and accessibility. Seventeen decks, 24 elevators, 6 pools (not including the adult’s only Solarium pool…no not THAT kind of adult’s only!), 6 hot tubs, with one having a lift directly into it, a children’s play pool area, an aqua amphitheatre with high diving shows, zipline 8 stories over a major “neighbourhood” deck, two rock climbing walls, 2000 seat theatre, jazz club, comedy club (which insanely only has 90 seats) and even a bloody ice rink with both ice shows and skating for passengers.
The ship was so massive that when we ported in Nassau, Bahamas we had both a Disney Cruise ship and a Carnival cruise ship beside us…they were dwarfed by the Allure…and that’s an understatement.
All that doesn’t even cover the eight public spaces they call “neighbourhoods”. From the Grand Promenade that greets you when you first come aboard, to the Boardwalk with its full size carousel and feeling of an old 1920’s shoreline amusement park feel. (for the geeks out there I really felt like I had stepped into the gameworld of Bioshock Infinite, it was that close). You’ve got casino, the theatre district, the sports deck with Flowriders (two of them! look it up if you don’t know what they are), the zipline, mini golf, basketball court…and that’s not even getting into the massive adventure club that is split into age groups for everyone under the age of 18. One friend saw a picture of Shannon and her friend Connie, shopping on the Grand Promenade and thought they were in a town, not onboard ship. That is perhaps the most amazing thing about this ship, it is so huge that at times you can forget you are out at sea. We did hit a few small storms at night and barely noticed them (but that being said, if you have a seaward facing balcony, DO NOT leave anything out on it to dry…wow those storms come quick and powerful).
There was one other neighbourhood which became a favorite of mine. Central Park on deck 8. It’s exactly what the name implies, an area inspired by New York’s central park, with a couple of restaurants lining it, trees and shrubbery, two small stores…and at night it was the most peaceful place with the lights and live classical music playing. We didn’t spend all our time there, but the accessible room that Shannon and I got had a balcony that face the interior of the ship and overlooked the park. For all but one night it was amazing to end the day out on deck with a book, listening to the sounds of the ship with the music just floating up to you. I saw all but one night, as that hits our only complaint of the cruise.
What idiot cruise director approves a pool party for the teenagers onboard, with live DJ, from 11:30pm to 2am, when we are getting into port the next day at 7am!?!?? Yes, I admit…complaining about it made me feel damn old…but any other night I wouldn’t have cared…though the downside up being up on deck 14 was that were right under the pool deck…only complaint we had mind you.
The room itself was what you would expect from a modern cruise ship designed for accessibility. Roll in shower, grab bars everywhere, closet with hangers at lower heights and even a mini-ramp you could flip up and down to roll straight onto the balcony. Now admittedly, the angle of that ramp would be a bit of a challenge for someone who doesn’t have full upper body movement or strength, but the effort was made and it was appreciated.
The shows were fantastic, the comedians great (don’t try to leave for the bathroom mid show…seriously…just don’t!), the aqua theatre was amazing to see as high dive artists are jumping into 18 feet of water on a moving and rolling ship. The ice shows were decent, and the link they’ve made with Dreamworks paid off, as characters from Shrek, How to Train your Dragon, and more were on hand all over the ship. Really I cannot recommend the experience of this ship enough to anyone even thinking of taking a cruise. In another post to come I’m going to discuss the sports staff and the effort they put forward to help a paraplegic do the zipline.
Oh wait the ports? Eh. Nassau we’ve done and we didn’t get off ship. St. Thomas is basically one giant jewelry store and is NOT wheelchair friendly at all…St. Maarten was gorgeous once we found the boardwalk, but we only had time to see the Dutch side…that I would like to return to. Overall, the ports just paled compared to the ship itself.
I can’t do justice to the ship in pictures, but here are a few to give some idea of what we had onboard. Overall, whether you have accessibility needs or not, this and its sister ship, the Oasis are an experience you had to do in person. More on this trip to come.