Category Archives: Lore’s Musings
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!
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.
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!
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)
“It was the best of scans and it was the worst of scans”
I was a cub scout as a kid, really into it for a long while. Actually, I became a Senior Sixer! Which basically meant I was almost too old for being in cubs and had to move up to Scouts, but that’s a whole other thing. This past weekend I had a flashback to that time because of a game that was played in the school gym that was used for our Cub Pack meetings. You probably played a variation of it yourself. The goal was to get into a position on the floor, whatever you wanted, and stay as still as possible, not moving even a finger, until the game was done. The leaders would come around and try to distract you into moving…they couldn’t touch you, but they shout, clap, jump around anything at all to get a young kid to move. Once you moved, you were out, but you could around trying to get the other kids “out” too. I remember quite clearly, that I determined the best way to win this game was to get down on my hands and knees, and “turtle up”, hugging my knees and bending my head down, shoulders hunched up to cover my ears and my eyes closed. I won that game, staying still the longest…and I distinctly remember that those minutes…hell it couldn’t have been more than 5 minutes…felt like hours…
Flash forward to last weekend…on Friday, I got a call from St. Mike’s hospital asking if I’d be available for a rather oddly timed series of MRI’s. Yes, I’m going through them again as we are getting some updates on how the spine is doing…more on that later when I actually know more. What was notable here was that it was 3 scans, being broken into two appointments. A short 15 minutes scan of my head (insert joke here) happening at 5am on Sat. morning. Yep, had to be up at 4am, drive into downtown T.O. and get the scan while most of the world is dead asleep. It’s amazing though, that a 4am drive in downtown T.O. can take just as along as a 5pm drive. I’ve never had to do so many out of the way detours on totally deserted streets…actually I have, it was just back when I able to handle being up at 4am and not be fried for a week.
BING, ramble done.
The second set of scans was going to be the more difficult, two sets totalling 90 minutes at 1am the next morning. Fun fun fun. While I was able to five myself to the first scan, this one required Shannon to drive me…medications would be involved.
If you’ve never had an MRI, you must wonder what the big deal is. So take a read.
After being divested of all your clothes (you can have no metal on you at all), you are forced to wear one of those ridiculous medical gowns…when is someone going to come up with a better design for those? Once in the room you lie down on a mattress that a buddhist monk would declare too inhumane to lie on, and then you are pushed into a tight metallic tube. You are in so tight that even the smallest person is going to have their shoulders pushing together against the side of the chamber and your nose will be brushing the top of it. Then you have to lie completely still for the duration of the scan with absolutely NOTHING to distract you. Oh did I mention needing ear plugs to block out the deafening noise the scan generates as it sends the magnetic pulses through your body? Am I making this sound appealing?
For shorter scans, this isn’t too hard. In fact, that first 5am scan went well. For once my legs behaved, and I actually just let the mind wander a bit…trust me you can’t fall asleep in that tube with all that noise. That night I discovered that the receptionist and the scan tech would be the same the next night, so I had a few good laughs with them, made sure all was well, got changed and then wheeled back through the deserted hospital, discovered the sun was rising and made it home by 7am….never did get back to sleep. Simple right?
That is what someone said later that same day at a BBQ we attended when we discussed why we had to leave early. Lying still for 90 minutes? How hard can it be? (channeling Jeremy Clarkson and Top Gear challenges). Seriously, things never go right once someone says that. What many forget is that it isn’t just about lying still for 90 minutes. It’s about lying still when you have two legs that barely obey you at the best of times, let alone 1am after too little sleep and in a very uncomfortable position. To say the least…scan #2 was a disaster….we never even made it to scan number 3.
That is one of the biggest frustrations we’ve had through this process. The inability to predict what my body is going to do in a given circumstance. Less than 24 hours earlier, it behaved. I could have done the longer scans at that point if the scheduling had been right. It wouldn’t have been pleasant but my legs weren’t moving at all, my back felt good and that was on barely 4 hours of sleep. Night two? Despite taking some meds I know I need to take to relax my legs, within five minutes of the scans the right leg, the WEAKER leg with the still healing broken foot, was jumping about like someone was shooting electrical probes into it. One jump was so bad I rammed the shin into the top of the bloody MRI tube. With no logical reason for why it happened.
MRI’s are something that all spinal cord patients have to deal with regularly. Not just us of course, people with MS, Parkinson’s and a host of disabilities rely on MRI’s to keep them in touch with what’s going on inside their bodies. Since my initial diagnosis back in 1999, I’ve had more MRI’s than I can count. It easily over over 20 of them at this point…and it amazes me how little the process has changed in 14 years. Same basic process, no matter how new the machine, same long long long wait as the scan does it thing. I joked with the tech about that and he mentioned that during the day they have two newer machines where they can actually pump music in to help keep you occupied…but nothing has changed in how long the scans take. They are more detailed and accurate, but they still take a long time to do.
Why?? Forgive my hate on Apple analogy, but its like these are machines that are overpriced but underpowered for what they do, with only minor tweaks in all that time to make them slightly more comfortable and more accurate. They are amazingly expensive and hospitals try to make them last for at least a decade where possible…but I can’t be the only one who wonders why this tech seems to have changed so little in the past decade.
I can look forward to a rescheduling of those scans (I don’t expect them to find anything in my head…not much there to begin with), but the spinal scans need to be finished. That means most likely they’ll be under a general anesthetic and Shan will have some fun hauling my butt home after the scans. It’s amazing to look back at that game I played as a kid and remember how hard it was to stay still for even a short time. Now, 30+ years later….there is no way I could win that game. Hell I’m not even sure what the point of the game was! Teaching concentration? Killing time near the end of the meeting?
So here’s hoping that we get something better than MRI’s coming down the pipe soon.
Whining rant complete. Feel free offer your own “how hard could it be” thoughts to match my REALLY stretched A Tale of Two Cities metaphor.
It really is ironic. Three days after Toronto gets hit with the most rain it has seen since Hurricane Hazel hit in the 1950’s…I find this article.
Figures eh? Granted much of this SHOULD be common sense but you don’t really think about it until it actually happens to you. On July 8, 2013 it happened to me and the entire city of Toronto. Flooding, massive blackouts….and the lesson of what happens to a Geek on Wheels when he’s stuck alone in his office, one the 3rd floor, when the power goes out.
Oh and did he mention…he was in the bathroom when the power went? With no emergency lights. Yep, he’ll leave you in the dark on that picture as much as he was.
And with that the speaking in third person ends…
Granted if I’d left 5 minutes sooner I’d have been stuck for 6 hours in an elevator, so it could have been worse. It did teach a few lessons though.
The first was to thank my amazing friends and remember how important the support network of friends and family is that I’ve got (yes that was an awkward sentence, but sentimentality is always awkward, so deal with it). Bruno and Jonathan went out of their way to drive down and get into the building, then helped slowly wheel my way down the three flights of stairs, then get me up the hill to my car as the rain pelted down. They couldn’t do much about the 2.5 hour drive home but still…
I owe you a DLC on Steam boys!
I was stuck for about two hours and really should have left much sooner once I realized how bad the rain was coming down. No one, not even Environment Canada, predicted it though…and when the bathroom went dark, all I could really do was swear loud enough and hope someone could hear me. Well that and be grateful that Blackberry Instant Messenger didn’t fail through the storm. (tech blog coming about that one, as cell phones, text messenging, and other IM apps failed big time during the blackout, but BBM worked without a hitch).
Three days later Toronto is still recovering, and was hoping we didn’t get hit with more storms today (which it seems we got lucky and missed). Three days later, I’m still hating on that feeling of being stuck and out of control. When you’ve worked hard to be as independent as possible in your chair…well I still haven’t got stairs figured out yet I admit.
Worst case scenario if no one had been able to get in? I would have bummed my way down the stairs and tried to carefully lower the chair before me…but I’m sure we can all imagine the disaster to come out of that one if I’d tried.
So finding this article from Wheel-life.org was serendipitous, and thanks to Dana for sending me the cute FB pic that led me to them. A host of great resources for me to go through and a great outlook on life seems to be what drives that site and its members. So I’ll take some time to prep better for the next disaster…and be thankful for my friend and family.
Oh and…Keep Calm! It’s only a wheelchair!
It’s been brought to my attention that Geek on Wheels has been way too much about the Wheels and nowhere near enough about the Geek. So let’s change that shall we? This weekend a bunch of the gang got together and saw Man of Steel, the new Superman movie. Given my comic book geekdom (there would be Shan rolling her eyes…wait for it…NOW!) Note that this discussion will be SPOILER FILLED! I don’t want to read any complaints about how I ruined the movie, as there is much to discuss.
First off, a bit of history. I have never been a HUGE fan of Superman in the comics. It isn’t often that he is actually written well….and this isn’t really his fault. How do you write a story when the main character is all but invincible? A few have done it, with two that come immediately to mind. All-Star Superman, the 12 issue mini-series stands up as amazing literature, not just a great comic. Then there was Gail Simone’s run, with the best interpretation of the Lois and Clark dynamic ever…but those have been few and far between. It isn’t in my normal reading list for comics, but I do keep up with the basics of where the stories are going.
That being said, I am of a generation that is still in awe of the Christopher Reeve rendition of Superman onscreen. Nothing can compare, even with modern graphics, to those first scenes of Superman flying, the amazing John William’s theme…and Terrence Stamp’s work as General Zod (we are going to completely ignore Superman 3 and 4….they don’t exist). Hell, I even enjoyed Brandon Routh in the somewhat flawed Superman Returns. So I come to this new reboot of the Superman mythology with both an open mind and some open baggage when rolling in to see the newest version.
So the short verdict? I liked it…I liked it a lot.
I’ve read a lot of the controversy in how many comic geeks feel about the portrayal of characters and the pivotal death (not Jonathan Kent) at the end of the movie…but in general, I really enjoyed the movie and how it handled Superman for a modern era. Do I have some quibbles and one very big technical complaint? Oh hell yes…but do I loathe it for completely messing up a story like the last Wolverine movie? Just the opposite!
This movie offered the most vivid portrayal of Krypton, Superman’s homeworld, yet, with hints of back story in the caste system of that world, the conflicts of it and the reasons for the final destruction of the planet. I admit…I was a bit stumped when I realized that Russell Crowe’s Jor-El apparently had a pet dragon-butterfly…no other way I can describe it…but I made a comment to Bruno and let it move on. However, it was during these opening sequences that my only MAJOR issue with the movie began to take hold.
It suffers from major Michael Bay-ism.
What? You don’t know what that means? Ever seen any of the Transformers movies? Hell, have you seen any movie directed by Michael Bay? They all suffer from a major flaw that makes watching them very hard…the overuse of quick cuts. Man of Steel suffers this issue and since the action is almost non stop, most of us had major headaches by the end of the movie just trying to keep up! Punch! *change of camera* Slam! *change of camera* building collapse *change of camera*
It’s a common problem with many action movies, where they don’t let you see what’s going on clearly, a trick to make the action seem that much more intense without actually showing you all that much. This leads me to digress a bit…(shocking I know) into last year’s big superhero phenom…The Avengers. There is a reason why that movie is better, even if it might not be quite as philosophical as Man of Steel. It made sure you could keep track of ALL the action, along with the in-depth character moments. It allowed for longer and more lingering shots of the action. You could keep up with what was going on!
Now before anyone accuses me of sounding like a grumbling old man of 40…keep in mind that I am a gamer, as were most of the people I saw the movie with. We know fast action and we keep up with it. This was just something else. As spectacular as the action was, you never got a chance to catch your breath! Well at least until that death at the end…which brings me my last bit of observation.
When you compare DC’s movie, ala Man of Steel and the Dark Knight series…hell even Green Lantern, it is remarkable to me just how dark they are. For a Superman movie, this one was exceptionally dark and very negative in its outlook…especially in the personification of Jonathan Kent. His mistrust of humanity…and his death didn’t ring true to me. In every other interpretation of Superman…Pa Kent’s death has always been something completely out of Superman’s control…a heart attack. No super speed or strength could stop something like that from happening. In this one…Clark stands by and let’s his father die just to hide his secret from the world…it doesn’t ring true with what Superman is at all. The darker themes work with the Dark Knight, and can even work with Green Lantern to a degree…but Superman? It’s a curious choice by DC, especially given that for years, their comics were always considered the lighter and brighter, while Marvel’s works were the grittier and more “real” of the two universes.
By contrast, the Marvel movies have been fairly upbeat and much more “comicy” in their feel.
The trick is, that is just a philosophical debate…because the movie was VERY good. They nailed Clark outside of his Superman tights, they nailed Lois and her tenacious side, they nailed the relationship that built…even if the speed of it seemed a bit odd…but with the exception of Jonathan Kent I thought they nailed the characters and their beats down well. Hell, even the new uniform design, losing the red trunks, worked well….which is a rarity in superhero movies (still hated Captain America’s look in the first movie). Even that new-ish logo had a great look to it.
Overall, I stand by what I said that night…an 8 out of 10, with the 2 points lost mostly for the over the top, headache inducing action and a few quibbles with the cynical look at humanity that doesn’t fit anything about the Man of Steel. It’s well worth seeing if you enjoy a good summer romp…and with nary a Lex Luthor or Kryptonite to be found…you know they are setting up for one hell of a sequel…and dare we ask…a Justice League movie?