PARAPLEGIA home miscpage
Updated November, 2005.
This section talks about my experience of an accident which resulted in paraplegia. It covers all the major aspects, I think. If you've arrived here, it's probably because you either stumbled on it from my home page, or I referred you here personally, since I got tired of explaining it all to people I met on the net.
That in mind, the goal of this section is to educate people about paraplegia- I myself saw someone in a wheelchair and figured "Oh, they can't walk, that must suck".. but little did I know how much was involved...
Hopefully, this will answer all the usual questions people keep asking me, the questions they're afraid to ask, and some info that most people never even thought about. I may have fudged a lot of the more medical terms, but this isn't a medicine school textbook, so who cares...? And keep in mind, this is about MY experience, so don't assume that everyone in a wheelchair feels the same way..
I used to think that if I had to be afflicted with any disability, I'd choose to lose use of my legs.. I don't play sports and I'm kind of a homebody anyway.
Blind? No thanks. My art means a lot to me. Not to mention video games, movies, etc.
Deaf? Then how would I compose?
Well, After severing my spinal cord at the T5/6 level, I've changed my mind. I don't compose much these days anyway. Not to say I wouldn't miss sound...
But I had no idea there was so much involved in paraplegia. (indeed, just plain losing my legs would have been easier) It's actually more like 5 disabilities in one- each one a burden alone- but together- I had no idea. If the world knew more, no one would begrudge the wheelchair parking spots, that's for sure.
Below are the original sections I made for this page. Most have been revised, but in any huge way.
|The accident||The physical effects|
|The scoop-up||Political Correctness and the public|
|RCH||Para? Quad? Huh?|
|VGH and surgery||Daily life|
|PTSD||Going out /Transportation|
|The Rehab Experience||Emotional Effects|
Sept 26, 2001. The Sept 11 terrorist attack was still thick in the news. It was a wednesday, and a light but steady rainfall coated the streets. I set out on my mountain bike, headed to my job, repairing computers, and preparing web pages.
About halfway to work, I needed to cross a busy street, no crosswalk nearby. You're supposed to walk your bike across streets, but I held it in higher priority to get off the road quickly. I looked both ways, forward, and over the shoulder, and rode off the curb.
Just as I crossed the centre line, I felt the need to check over my shoulder again. I saw a flash of rapidly approaching blue metal, and a very surprised face. I floundered for a split second, to turn back, but there was no hope of that, given the distance. I only managed to begin slipping on the wet road. Mustangs stink at emergency braking as it is, let alone on wet roads. I don't know where he came from, since I'd checked just before I entered the street- I can only imagine he was speeding, or tore out of a driveway.
The Ford Mustang caught the middle of my back. The next thing I knew, I was sliding along the wet pavement. I realized that I was feeling unimaginable pain, and I eventually stopped sliding.
I knew instantly that my lower half was dead weight. It was a welcome feeling, compared to the blinding pain just above, and through the ribs. I didn't even feel the extensive road rash, compared to this. It was a pain that is literally unimaginable. I would have imagined that a body would sooner die, and at that moment, that would have suited me just fine.
Gasps and footsteps grew nearer. I heard someone say "I know first aid!" I've known a couple people who THINK they know first aid, so I tried to yell out "Don't move me! Call 911" Being heard over their panic was hard, especially through the pain, and a greatly reduced lung capacity. .... if I had been quicker on the draw, I'd have called out "I've fallen! And I can't get up!"
PS: Did I mention the pain?
In about 5-10 minutes, I heard the ambulance arrive. I was glad to see a pro on the case. Between that, and Sep11, I started to see those guys like heroes, and I guess they are. The guy talked to me, and made me answer simple questions, to see if my mind was working reasonably. I would have been happy to pass out, but he wouldn't let me.
I saw those big scissors come out, and heard my pants getting cut off. Great... stare a little more, people. Although I'm sure I wasn't at my sexiest, smattered in blood from my face and hand. He checked me out, rolled me onto my back onto a board, and put a neck brace on me. (Maybe not in that order, it's hard to remember.)
Soon, I was being slid into the 'bus'. I heard my cell ringing, somewhere. The paramedic asked me if I cared. No... not really. As it turned out, it was someone from work looking for me. I'm not the kind to be late, so they were a bit worried right away, having heard the ambulance. A cop's smiling face leaned over me. He looked really happy, and was talking, but I didn't care enough to pay attention to what he said. He laid a ticket for no helmet on my chest, and cheerfully wandered off.
Soon we were rolling. The paramedic did things to me, but I only remember him moving around, not so much what he did. I asked to be knocked out, and he refused, saying it was better to be awake. I tried really hard to let myself pass out. I almost made it- almost escaped the pain, but no luck. As the morphine soaked into me, the world got hazy, and logic blurred. I don't really remember the pain going away though.
The paramedic asked me if he could do anything for me. That seemed like a silly question, so I requested that we stop for a slurpee.
Royal Columbian Hospital. The morphine clouded my experience. I remember being under an Xray machine, then waiting. A nurse held my hand and spoke comforting lies as I cried. Another nurse asked me about how to use my cell phone, so she could get a phone number to contact someone. She had to run outside to operate it though, since you can't use them inside hospitals.
A while later, the first familiar face showed up. My dad's girlfriend showed up, her face bent over from above, patted me on the head and said 'Are you ok, Joey?' I mumbled some kind of non-answer before she was shooed away by hospital staff, who wanted to work on me.
They soon decided that I needed to go to a bigger hospital, so they prepped me to head to VGH
VGH and Surgery
Vancouver General Hospital. People began to show up from all over, and almost all of them cried. The morphine was starting to make me sick. I threw up on my friend's girlfriend. I was able (barely) to use a suction wand set up by my bed, to try to clean up the vomit from inside my mouth. Over the next two nights, I learnt to place the wand so when I threw up, it was right into the suction, so I didn't have to taste it. During that time however, my body seemed to get more used to the morphine. I threw up so much at first, that a nurse was shocked that I didn't have a tube down my throat when she came back on shift the next morning. I remember I was very thirsty, but they wouldn't let me drink. They let me moisten my mouth with a tiny sponge on a Q-tip like stick. Yummy. The pain was less by a tiny bit now, (perhaps the morphine was starting to make a noticeable difference) but that was little consolation. It was still far more than I had every felt previous to the accident.
Someone came to talk to me about surgery, but I wasn't interested in the details. I just trusted them to do what was needed. I went to sleep, and when I awoke, I felt about the same, except I had a huge new scar, and an erector set in my back. Ten pins, and a bit of bone taken from my hip, set into my spine. Cute.
One day, they brought me food. I didn't realize til then that I hadn't eaten in a long time. The IV in my arm fed me. I also noticed there were other tubes connected to me- most of the time, I was quite happy to ignore them, and not wonder what they were for.
I spent about two weeks in VGH. I did a lot of crying, especially when I was alone- I disliked to make my visitors more upset than they were already. I watches the little TV with the little headphones, often late into the night, as it was hard to sleep. I watched a lot of stand up comedy as I remember, and tried hard not to laugh, since that hurt. It was worth the distraction though.
And it was HOT. A heatwave hit us around then, and the whole wing of the hospital was like a greenhouse, day and night. With no small effort, I kept little fan (attached to the bed via a metal arm thing) basically pointed right at my head.
My girlfriend (later to be wife) Michelle was there so much- I didn't know how, with her 3 jobs, and school.. I was afraid she'd slip in classes, be she made it through one way or another. So much moral support came in, it amazed me. I'd spent my life trying to be Mr Nice guy, and until then, I didn't think the world noticed. The nurses were great too. I just wish I could remember the name of my favorite, but between my already bad memory, and the morphine....
As time passed, they used a crane-like lift to get me into a huge wheelchair. I was able to push myself only a tiny bit. At first, I could only stand half an hour in the chair, but before the end, I made 5 hours, the requirement to get into GF Strong....
Just a quick note on Post Traumatic Stress Disorder. Looks like I have/had a slight case. As I came off straight morphine, headed to GF Strong, I noticed that sharp sounds could set an amazing sense of panic into me. I would feel a jolt through the nerves in my legs, and my heart would jump into full gear. Occasionally a quick yell would escape me. This effect lessened, it still happens now and then, rarely.
For the longest time on the news, or in movies, when a car accident is featured, panic and fear crept into me, and I was 'forced' to visualize it in extreme detail. I receded into my own mind, and had trouble getting out without a distraction. While I could usually remember and talk about the accident without getting weird, sometimes it felt like the memory remembers ME, at which point, I got spaced.
At the time of this update, (nov 2005), these effects are mostly gone.
The Rehab Experience
GF Strong Rehab Centre. There's so much to tell about my time there- It was half a year out of my life. It was home, and hell at the same time.
I made some friends, ate questionable cafeteria food, and worked towards a life that could arguably be called 'independent'. Worked on my tolerance of the chair, and healed. And got used to the idea of being a 'cripple' for the rest of my life.
Physical Effects of (my) Paraplegia
Every case is a little different, but here's what MY body thinks of the experience-
Pain- Once leaving VGH and the Morphine drip was gone, I was switched to a array of STRONG pills, which each deal with pain in a different way. There was Gabapentin (for neurological/nerve/phantom pain caused by 'error messages' on the damaged nerves) Celoxib, and Baclofen, which are a really good anti-inflammatory and spasm suppressant. The main pain medication was Oxycotin, (The stuff Rush Limbaugh got hooked on), which was later downgraded to T3, later downgraded to over the counter stuff. I've since given up all pills, and just suffer the pain. The pain killers slow the mind, and I hated operating like that.
Spasms- When tired of a position, or just rubbed the wrong way, my lower body's muscles may go into spasms. At first, without medication, they begin to resemble mild seizures, and are very painful. Right now, they're mostly just a pain in the butt, as they try to toss me off balance, make me lose control of my chair, and other such nonsense. Most people who I meet in an average day never notice them however, since they usually happen when I'm in bed, or moving my lower half around. I've also become more able to predict when they will happen, and what will set them off, so I'm better prepared. I can sometimes set them off on purpose before they "charge up" too much.. like causing small controlled avalanches, to avoid big disastrous ones.
Lower body vulnerability- due to the lack of feeling, and low circulation, the lower body is prone to pressure sores, blisters, and if not noticed, cut can turn into infections, and hot water or food can lead to serious burns. I've had a casual acquaintance with some of these problems.
Autonomic Dysreflexia- Caused by many possible things, and with many different possible symptoms, 'goin dysreflexic' can result in unusual hot, cold, blistering headaches, and many other things, possibly including death. It's the result of something going wrong with the body in a nerve-damaged area, and the signals getting messed up, causing havoc.
Ok, now into the "I didn't need to know that" department.
Sex- Well, Mr. happy is no longer in communication with the brain, so, I can't feel anything going on there, nor do I get an erection when I normally might. I can only get an erection if Mr. Happy is physically stimulated, and even then, he doesn't have much of an attention span. At this time, I haven't had anything even resembling an orgasm since the accident, and although it's possible, it's not likely... and even still, if I ejaculated, I wouldn't feel any of it anyway. -Any sexual activity is a common cause of Dysreflexia, so theoretically, there's an outside chance it could try to kill me.
Urination- During most of my stay in rehab, my body would not release urine on it's own. I had to do an internal catheter. That meant doing a little procedure on myself that boils down to inserting a small lubricated tube through Mr happy, and gently pushing into the bladder, so that liquid can be released. If not released, the buildup can cause dysreflexia, backup of the kidneys, infections, or other fun. My bladder has since decided that it will release liquid whenever it damn well feels like. So, I'm forced to wear a drainage bag, hooked up via a special drainage condom. These devices are far less than perfect, and to a new user, easily results in a couple of embarrassing accidents a week. I am now however, far more experienced, and I can't remember the last time it caused that kind of problem.
Defecation- The bod doesn't do THAT normally either. Assuming my diet is consistent, and no sickness is affecting it, I have to sit on a special seat on the toilet, and, with a rubber glove... er.... prod a bit, until I can get things moving. If things aren't going perfectly, I have also become good at avoid THAT kind of embarrassing situation, which is especially good since it's surprisingly bad for the skin, which can promote sores, and other fun.
Para? Quad? wha? So what still works on you??
A paraplegic has use of his arms, and a quadriplegic doesn't... generally... the classification varies- some quads have partial use of arms, and even legs, for example. That's a very 'incomplete' quad. A complete quad only has anything from the neck up.
I'm a mostly-complete para. Everything below the mid chest is non-functional... EXCEPT.... I can feel some pain, (oh goody), sometimes temperatures, and very occacionally, I can feel touch, very faintly.
An average day in my life.... 2003 edition
Around 7 am, I wake up. Michelle may or may not be awake by then, so I may or may not turn on the TV. By 9 at the latest, she's out of bed, and I will watch TV, play PS2, draw, or read. Around 9, I take my first volley of pills.
If it's mon, tue, or wed, I prepare to go to the bathroom. I dettach the drainage condom from the large night-bag on the floor, to the more mobile leg-bag. I use my arms to move carefully into the wheelchair. (this is rather hard, and often painful, especially first thing in the morning.) I go to the bathroom, and transfer again onto the toilet, and do what has to be done. (explained above... ick) Onto the chair again, and then next to the bench that sits in the bathtub, a bit out. I transfer onto it, and have a shower, sitting down. All the while trying not to fall forward. After that, I'm wet, and stick to the bench, and the toughest transfer of the day, back into the chair. I get back to bed, and re-attach to the night-bag. (Using the leg bag in bed often leads to messy problems) I rest from the 6 transfers, and am glad it's over for a couple more days.
Every day, I put on a fresh drainage condom, or else the old one would slip off, and cause an accident. Then, I relax in bed, changing positions as my skin demands, while trying to entertain myself. I have to stay in bed most of the morning, to save energy for the rest of the day.
Around noon, I take the next volley of pills. I start to get dressed. Ever put your pants on while not able to move your legs? It takes a lot of time and energy. Anyway, about an hour later, I'm rolling.
I clean up a bit, microwave something to eat, then usually go check email, and things like that. I might draw, but I usually try to make good use of my time, doing things I can't from bed. I've recently adventured to the store on my own, and it's occasionally my chore to go get the mail. I try to stay up past dinner, but often, I have to get back to bed before that. Once back in bed, (after doing a few unusual bedtime chores) the rest of my day looks a lot like the morning, except the TV is better, and Michelle's more likely to be around. After 15 minutes of the 11 o'clock news, we usually lights-out. With any luck, I get to sleep, waking in the night for spasms, and wrestling back blankets.
Wake up around 7 usually.... if I'm unlucky, I woke up like 5 am, but we'll skip the sleep cycle chaos that ensues, and assume I slept well .. or well enough. Michelle's out the door often by 8, and I watch TV for a bit, and mentally convince myself that the pain is down enough to get going. This usually happens at 9 or 10. Put on a fresh drainage condom, detach from night bag, hook up the leg bag, get dressed, get rolling. Empty the night bag, brush, yada yada.
Head to the kitchen do a couple chores like putting away the dishes, maybe eat, head to the computer, work and/or play.
Around 2 or so, the bod decides it wants a rest. Back to bed, watch a little TV< draw, or play ps2. Around 5, 5:30, I get rolling again, to help with dinner, and eat it, help clean up. Then maybe some more computer, or TV with the wife.
Around 7, I go do the 'routine' in the bathroom involving the grossest part of my day, then maybe a shower. Then bed. Then it's back to the mix of drawing, TV and PS2, until 11 or 12....
"Differently abled"?? Gimmie a break! Handicapped and crippled are a bit crude.. paraplegic is too medical-ish.. So when I can tell people don't know what to call it, I suggest the following favorable terms:
-Shorter than I was before
-Too damned lazy to walk
-And my favorite, 'Gimp'. *
The public- god bless em... there are buttons all over the place to open doors for me, and strangers leap into action to press them for me. It's silly, I can do it myself, but I do appreciate the thought- and the fact that most people are so eager to help.
When I drop something, I can pick it up, but it takes me a little time. Usually by the time I even get into position to start bending down, someone's handing it to me. Sometimes I just would like to show them that I can do it myself, but, it's still nice.
Cashiers offer to put things in my backpack for me, and people insist I go ahead, even if it were far more logical that they go ahead. Some of it's silly, and sometimes frustrating, but if I just remember the goodwill behind it, it's all good.
Then there's staring. People just have to check me out a bit, it's natural. Actually, that's never bothered me- amused me maybe. It's the kids. They don't know what to think. I'm afraid I scare them a little. As I got older, I started to realize I sometimes scared kids a bit, as a big scary man. What's funny though, is that kids don't seem to mind my big scary trenchcoat at all. They tend to think it's funny to have a coat that long. But the chair? So, I do what I can, as I always did when I feared a little one feared me... give them a little smile, and maybe stick out my tongue. That usually gets a shy little smile. Then they know that I'm not scary, just a little different.
*Gimp is like the 'N' word. Gimps can use it, non-gimps can't. MUAHAHAHA This was made crystal clear to me in a meeting between myself, my wife, a peer counselor in a chair, and a rookie counselor not in a chair. My wife was ready for the 'gimp'-slinging, but the able bodied rookie was a bit stunned, so we had to explain.
Going out / Transportation
I get out in one of 3 ways-
-Wheelchair alone. This puts me at the mercy of every bump. Although my chair has been optimized for the kinds of obstacles around here, hills, steep bumps, and even curb cutouts can be a big hassle- Even on terrain that a walking person would call 'perfectly flat'. As of now, I've gone on a shopping trip 2-3 blocks from home and back without being run ragged. Boy my hands are dirty at the end, if I forget to wear my gloves. I do NOT like being carried up stairs, and will avoid like the plague, any trip that involves even one. Please do not invite me over, assuming we can 'find some way' up the stairs. AND- you'd be surprised at the kinds of hallways that are too narrow- especially in corners.
-Wheelchair equipped taxi/Handi-dart/etc. This is pretty easy, I get loaded up a ramp or lift into the back of a van-like vehicle, and away we go. The bumps are murder tho, and these services are less than easy to schedule, and not very convenient at all. Actually.. I can't remember the last time I used one, due simply to the difficulty of planning ahead, and handi-dart layovers on longer trips.
-Car. It takes a specific type of car, with a seat at the right height, and a door that will open wide enough. We bought one just for those qualities. If you think I could get into your car with some effort, you're could very well be wrong. If you think it can't hurt to try, you're wrong. I could end up on the ground, re-fracture a rib, or god knows what else. And then, good luck fitting the wheelchair in. So much for spontaneous road trips. If I roll up to the doorframe and say "Not gonna happen", trust me, it's not. There is no combination of going in backwards, or other nonsense that is gonna change where the frame of the door is. Unless you wanna store me as cargo in the back of a PT cruiser, which I have done, and cannot in any legality recommend. T'was fun tho... except for having the guard myself from the wheelchair half on top of me..
"It's so great you've kept your sense of humor!" How many times have I heard that? Egads. Seriously. HUNDREDS.
Some say that someone who makes a lot of jokes is hiding some kind of sadness or something. Well.. Ok, if not before, then now, sure. Sometimes, not usually. (It's just the way my head works.. there's a process running in my head all the time looking for opportunities to make a joke. The world is only lucky I screen these jokes for appropriateness, and context. Some have seen me struggle to 'find the joke' in a situation, only to give up because the moment passed before I could make it NOT horribly offensive to the current company. :P )
Stem cell research may cure me in5-10 years, but in the meantime....
I can't go hiking. I didn't often before, but now, it's not a matter of choice. I CAN'T. The people at rehab would have some kind of solution. A quadriplegic 'climbed' a mountain near here... carried by 4 friends, like a coffin. WHAT FUN IS THAT?
I can't feel the grass under my feet, I can't casually bend down, and feel the dew. I can't crawl up the jungle gym out the window. I can't climb atop it, and feel the breeze of the night air. I'm parked at the bottom, in perpetual pain, crammed in a wheelchair, unable to take in a breath quite as deeply as before. I can't stand proud, and the adventures I imagine in daydream, are now all the more impossible. I'll never be a rock star, or be the hero fighting off hostile aliens. I can't change a lightbulb. I can't make love.
Every day is a war against my malfunctioning bodily functions, which take away from what little useful time I have, and risk grievous embarrassment in front of anyone I dare to encounter.
I put on the brave face- no one wants to see me suffer, and I don't want to hear condolences that don't help.
Well, I can't very well end on such a negative note... even though I roll my eyes when people assure me that somehow I'll get better, because they saw some guy on TV... there's that stem cell stuff.. I won't be shocked at all if in 5-10 years, I can put the chair away, and call this all a 'life experience'...
Well? I'm holding my breath!