rolling up my sleeves

It's my third week on the job, and I'm finally past the training and reading stage, and getting into the real work. I spent my first day at a rehab centre that I once was a patient at... 35 years ago! Things certainly have changed there, but I have to admit that my first hour there felt emotional in a strange way. I could feel memories of my experiences and the people I was there with, coming back in waves. It's going to be an interesting experience, one that that I'm looking forward to.

sorry

Its been weeks since I added anything to this blog. I told myself it's because I couldn't think of anything worth sharing. Truth be told, I've been going through so many changes and challenges I was scared I would be using the blog as my 'therapist' and just complain about how hard everything has been. That might have some benefit to me, maybe to you, but it just didn't feel right so I haven't blogged.

I've been preparing for one of the biggest changes I've had in years, starting a new job. I mentioned it here previously, and I'm finally starting work tomorrow. On top of that, I've been organizing my switch from a manual chair to power chair, from driving a sports coupe to a minivan, handling another broken leg, but mostly dealing with all the government red tape involved in these and other issues. It's been difficult, and has taken at times every ounce of drive I could muster.

I can see now that I'm at the point where I'll begin to see some of the benefits of everything I've been working on. It's like that sometimes. You have to get though a lot of crap to begin to see the light. It's been a lot of crap all at once for me, but now I hope to have some fun.

next stage

I'm very excited that I'm about to start a new job as an Integration Counselor. I'll be working with an organization that for years has been devoted to promoting a better life for the disabled, particularly those with spinal injuries. My role will be mainly to offer assistance and guidance to the newly disabled as they get their life back on track after the changes they've faced from becoming disabled. I'm very excited about having been given this opportunity!

ongoing lessons

I recently spent a day playing tourist in my home town. It was a great experience, but I was aware of many sets of eyes on me, looking at me with a 'not sure what to make of him' look. Even in this day and age, there are always some who still stare, but it's something I hadn't noticed happening as much as when I was first disabled 35 years ago. I'm not sure if it was because they were tourists from places where they were not used to seeing someone disabled, but there were definitely more stares than usual.

It seems there will always be someone to teach...

go for it

Life isn't about waiting for the storm to pass. It's about learning to dance in the rain. (unknown)

movement

I'm used to having to fight for things, and now find myself in a situation where what I'm trying to get might not be too much to expect (nice change). This week I was able to take a step back and let people who have things to offer explain how they can help, and see that I may not have to push as hard this time to get what I need. They were patient in explaining what they could contribute, listened to my concerns, and while not promising anything, I was left feeling with a sense of hope.

I'm entering into this with cautious optimism, and a sense of being supported. This is how it should be.

changes

Life is full of changes, some are big, most are small. Well I'm making a big one. For the last 35 years I've managed with a manual wheelchair, and the last 25 years driving a car. That meant getting in and out of the car in whatever weather there was. It's been getting harder, and my joints and muscles are showing signs of wear.

So I made the decision, it's time for a power chair, and (gulp), a mini-van. Over the past few days, I've been working on seeing the positive sides of this decision. I'm going to be much more mobile outside, and maybe I'll get out more since getting into my vehicle will be simpler and quicker. As for the switch from my BMW coupe to a mini-van, that was harder. I did it by finding a fun little truck that could be converted instead of a mini-van. It's smaller, cuter and cheaper. The only problem is that I found out they aren't available in Canada. Then I found out that government subsidies take up to 6 months to be processed. So my idea of an easier winter seems to be unattainable. Seems to be... so now it's time to figure out how to make this big change happen in a more timely fashion. Stay tuned...

wheelchairs can be dangerous

A few weeks back I was going to one of my Sunday family brunches. I had arrived at the restaurant ahead of everyone else for the first time, so proceeded to get out of my car. My process is to get my chair out from behind the driver's seat, then move my car seat back. As I began to move my seat, I noticed in the corner of my eye that my chair was moving away... slowly... As I reached for the chair, I realized that it wasn't moving that slowly... everything was happening in slow motion. I sat helpless as the chair moved, past the back of my car... across the lane... over to the parking entrance... down the entrance and finally to stop. Stopped by a car entering the parking lot. As the driver got out and saw where the chair came from, all I could think was what my chair might have done to his car.

The gentleman came up to me and simply said smiling, "I think you lost this?" I apologized and asked if his car was ok, and he said not to worry, it was fine... accidents happen.

So I learned, a wheelchair in the wrong hands, that is no one's hands, can be dangerous!

evolution

I've been a quad for over 35 years, as hard as it is for me to believe. I've seen myself put on a few pounds and slow down a bit. It's all been a slow progression, but the kind of progression that pretty much everyone goes through as they age.

In the last few years, I've continued to challenge myself to grow, most notably going back to school, starting a new career and moving back to Montreal. But my biggest challenge has been one that I didn't choose. It's been dealing with the aging process as a quad. I've dealt with a recent fall and the resulting broken leg. I've been less active for a number of reasons which has lowered my stamina and diminished my strength in some ways. I've had to deal with rotator cuff problems that are painful and limit my mobility. Each problem is significant in it's own way, but together they seem to grow off each other. Now I'm dealing with difficulty transferring, and it's all forcing me to deal with the reality that my level of independence is changing. Honestly, there are days that I feel that my best days are behind me. On those days, I try to remember that what I have learned in those 35 years is that those days go by, and new ones bring new hopes, new challenges and new successes.

a farewell

The final words of someone special whom we lost today.

'My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.'
Jack Layton

creativity

I've mentioned how important creativity is in finding ways around things that I couldn't otherwise do. You can be the creative one, or find others who have that gift to add to your life.

Here is one of the important creations I use. It's a part of the transfer board I use to get into my car. I found that as I moved my butt forward to get around the chair wheel, the board would often move. This little sliding metal bar moves to hold the board in place. It locks in behind the wheel frame so the board can't move forward. I hope the pic hows a bit of how it works.

separator" style="clear: both; text-align: center;">

perfect fit

Today I went to see about a new wheelchair. I've been thinking about it for a few days trying to make sure I knew all the important things to consider when picking the right chair. Here's a hint... start making a list weeks before. There are so many things to consider when changing chairs, you don't want to realize once you've got the new one that it's all wrong. One little mistake can ruin it.

Just a few things to remember; is it heavier than your current chair (more weight to push around), the size is important (fitting in your home, your car, turning radius), back support height and type, folding or non-folding, foot support (will it change how you transfer), front wheel type (rubber or pneumatic) and side guards (dirt and moisture protection between wheel and your hips). By thinking about it way ahead, you can watch for things in your everyday life that may be impacted by a change in your chair.

outside

We've had a run of scorching weather lately, but today is gorgeous. There's a nice mix of sun and clouds and a gentle breeze. After a good deal of rain yesterday, the temperature is perfect. With the doors and windows open, I can hear the rustling of the leaves in the trees. It's a lovely summer's day to be alive.

Sometimes life as a quad is simply life...

coping

When people have suggested to me that it's amazing how I've coped with becoming a quadriplegic, I always say that we all have amazing coping skills, but we aren't aware of them until we are forced to face something difficult. I was reminded of that myself last week.

As I get into bed, I'm always sure to have access to my cell phone in case I should fall and need to call for help. On this particular night, I had reached the safe point, and had moved my phone out the way so I could pull my feet into bed. Something happened though, and I got an unusual spasm that threw me forward onto the floor. Once I realized what had happened and I checked to be sure there was no obvious injury, I tried several different ways to reach my phone, with no luck. I eventually realized that I wasn't going anywhere until morning (luckily I had someone coming by early that day). So I managed to pull my duvet off the bed and got as comfortable as I could, which wasn't very comfortable. It seems I had aggravated an old rib injury when I fell, and the way I was lying wasn't helping. The point of this story isn't to have anyone feel bad for me. I did enough of that for myself lying there (with the TV stuck on HGTV). What it reminded me (after it was all over), is that somehow through the toughest situations we find a way to get through it. That doesn't mean it's easy, but we get through it.

falling prey

We've all heard about those scams that target seniors trying to get at their money, and I can't count how many emails I've gotten from deposed African monarchs wanted my help to regain their fortune. There are also scammers who are more focused on whom they prey on. They take the time to research who they are going after. Being disabled, we are often perceived as more gullible, less able to protect ourselves.

The old adage, 'if it seems too good to be true, then it must be' works well here. Just be aware you might be a target, and if you think you are being scammed, call the police.

seeing red

As a quadraplegic we are more likely to suffer from bladder infections. There are many things you can do to help prevent these, including being sure to drink enough fluids. I remember hearing years ago how cranberry juice can help prevent bladder infections. Something in the cranberry juice helps prevent the bacteria from attaching to the walls of the urinary tract.

I came across this article that talks a bit more about it (link in 'helpful links). It talks about cranberries being used to prevent or treat UTIs (urinary tract infections). Worth a read.

tribute

I've mentioned before that I've got a fierce independent streak. As independent as I might be, I need people in my life, for many reasons. I want to dedicate this blog to one of the most selfless people in my life, my brother.

The place I moved into has a great balcony, but it wasn't accessible. There was no simple solution to change that. My brother and I both love the challenge of finding unusual solutions. Unfortunately, we have working styles that are polar opposites. Despite that and an insanely busy life, my brother gave me the time and effort to solve that problem.

Today I went out on my balcony by myself for the first time. I watered my garden. I picked tomatoes. I watched the world from above. I wondered how I could ever thank my brother properly.

slippery slope

If you use any type of transfer board like me (both wood, one for bed and one for the car), you may notice over time that sliding seems more difficult. Once you've eliminated the possibility that you've gained weight, you can blame the board.

A useful remedy is to treat the surface so it is more slippery. One easy way I happened upon by accident, is spraying it, or wiping it with Armor All or another car care cleaner. One day after cleaning my car seats with it, I nearly went flying as I slid out of my car. It really works!

One word of caution, if you get it on your hands, there goes your grip. That of course means pushing as you transfer is back to being hard...

keeping in touch

Whether you live alone, or spend any time alone, you're likely to face a scenario where you're going to need to reach someone. It might be that you've fallen, or you're simply stuck and can't get to your normal sources of communication. Trust me, it's something you want to plan for because when it happens and you can't reach help, you'll have plenty of time to wish you had planned.

There are many ways to do it, a cell phone that you always keep on you, one of those systems where you simply press a button and a call center answers, or the more sophisticated ones that can tell you've fallen without having to push any button. Shop around, because some of these can be pricey.

One of my problems has been that my cell phone does not work in my underground parking. That was taken care of by installing a 'phone repeater' which basically increases the signal strength in confined spaces.

Think about ways to deal with these kind of situations beforehand, and avoid having to swear at yourself with your loud outside voice...

distraction

If you're looking for something to distract you, here's something I heard about.... 'The Book of Awesome' and 'The Book of (even more) Awesome. In my 'helpful links' I put the page about #840, popping bubble wrap. Other awesome things listed on the cover include snow days, bakery air and finding money in your pocket. I haven't bought either book or the calendar, but I've seen the author interviewed. Based on on that, and what's on this link, it looks awesome (no pun intended) and I'll be picking up a copy.

Have fun being distracted...

another gadget

I put some plant pots on my balcony with various vegetables in them. One of those is a cherry tomato plant. Trying to pull off a cherry tomato, without dropping it it is near impossible. Then you've got to avoid running it over...yuck.

I found a new gadget. I took my pasta scooper (looks like a ladle with forked edges) and by placing the tomato in the scooper with the branch in the fork part, I can pull gently and the tomato stays in the scooper... most of the time.

kick ass

I don't care much for being given false hopes as I've mentioned in my earlier blogs. However, there are times when you are told 'no', and you need to not accept that answer.

I had my drivers' license before I was disabled. When I tried to get it again afterwards, I was refused the right to even take a test. Driving was one thing I wasn't going to give up without a fight. It took several months of going back and forth, with the help of an ombudsman, but I was eventually allowed to take the test. The driving examiner told me that if all his drivers were that good, his job would be an easy one. I'm still driving over 30 years later.

Sometimes you just know when the answer you get is wrong, and you've got to go out and kick a little ass.

understanding

Your friends, family and anyone else in your life will never totally understand the extra effort required for you to take part in life. But this doesn't mean you shouldn't try to help them understand to some degree.

For example, for me to get dressed and into my chair each morning can take almost an hour (hard to believe it was 20 minutes once, ahh, aging). Getting from my front door to pulling out of the garage in my car, when everything goes just right can be about 20 minutes. If people understand that, they know to allow for the extra time when planning to meet. If we don't share that kind of information, they aren't likely to think about it on their own.

It's not a case of looking for sympathy when you share this kind of information... it's just letting people into your life more completely...

signs

You no longer have the old indicators like pain that tell you are injured in some way. It's likely you have no normal sensation on a good part of your body. Your body however, still wants you to know when something is wrong and will find other ways to let you know.

Now these are by no means scientifically proven, but just my experience and that of some other quads. Examples are repeated spasms... it could be your leg that is having spasms for example, which might mean you have a toe squashed uncomfortably in your shoe. A warm almost mild feverish feeling might mean that you're sitting uncomfortably, or are feeling an impending infection. The weirdest one is sweating on your forehead, on one side only. This usually means something a bit more severe. Left side sweats mean right side injury, and right side sweats mean left side injury.

You'll learn to understand the signs that your body develops over time, and some will seem weird....

eagle eye

If you're fortunate enough to have your own place, you're going to have to be vigilant. At some point, someone you know, friend, family or an aide, will use something that you need, and put it away WHERE YOU CAN'T REACH IT. It's not because they don't care, or aren't aware... it's just not front of mind for them. It will happen, trust me. And when that moment you reach for that something comes, and it's not there, well that may be another inner voice time.

Try and be extra aware when you have company. Save yourself the grief.

another gadget

Dropping things on the floor is clearly the bane of my existence (well that and keeping sweaters tucked down in the back), and a while back a friend gave me an 'extending stick' that had a magnetic tip. This thing is great as it can reach pretty far and the magnetic tip can grab things like cutlery and even a can of tuna!

I've found one on line and put it on the links list so you can see what it looks like. It almost makes dropping things fun... almost.

pleasures

Sometimes when things are difficult, we look for huge solutions. What we forget is that the simple pleasures in life can really have a big effect. I recently moved to a place where I can have a BBQ outside on a balcony. I hadn't had that in 15 years. On the weekend, I spent some time with a friend setting it up, and had a simple meal cooked on the BBQ with a cold beer.

It tasted like the best meal ever.

safety

There are a few things you can do to lessen unnecessary risks when living in your own home as a quad, whether you are living alone or not. The day may come when you need help. It could be trouble with your door, having something you need but can't reach, or something more serious. Get to know your landlord, your neighbor or concierge. I recently moved in to a new place, and one of my neighbors came by and said if I ever needed anything, just to ask. She even gave me her phone number. The word spread in the building that I had moved in and everyone has been friendly and come forward to say hello or offer assistance. Even if I never need to ask for help, it's a great way to break the ice and meet new people.

Another important step is to let the local fire department that you are there. If there were a fire, they need to know that there are special circumstances, and that you may need help evacuating. As I learned in the Boy Scouts, be prepared.

gadgets

Gadgets, also known as Aides to Daily Living are very important in the life of a quad. You'll surely be suggested may 'devices' from your Occupational Therapist, and can find all sorts of neat ideas from catalogs. But some of the best and most useful ones that I have are ones I threw together quickly.

Probably the most important one I have, is my modified coat hanger. I took an old metal coat hanger (the kind you get from the dry cleaner) and stretched it out, with the hook at one end. You can bend the hook into a tighter "J" to give it more strength. If you've dropped something, or something is just out of reach, this can be a life saver. I keep 2 in my car, one in the bedroom and another in the kitchen. I'll try and post a pic soon.

juggling

If you're a new quad, you got a lot to juggle. Some of the things that may not seem important now might have consequences down the line. One thing I've noticed is that most quads I see have the fingers in their hand fairly open. In my case, they are more closed. Looking back, I remember that wearing the splints they gave me for my hands was very uncomfortable. I remember constantly taking them off, and not getting much resistance. Actually, maybe I did get resistance and just don't remember. Maybe I was just being my stubborn old self.

What I have now are hands that are tighter than they should have been. I'm not sure if I'm better off or worse off because of it, but I do know it would have been good to understand my decision and it's repercussions. So, no matter how trivial something you do might seem now, be sure you understand both sides to the decision.

Hands down, it's the right way to go :)

links

You may notice that I added a section to the right called 'helpful links'. Any time I find something relevant to my topic that might be useful, I'll add a link. I've put in a few from past topics and will add more. If you have any to suggest, feel free to do so!

regular maintenance required

I'm writing this sitting in the x-ray dept waiting room. Six weeks ago I broke my leg when I fell getting into my car. I'm here to see if it's healed and the cast can come off today. It's the second time I broke my leg, the last time was in 86. To this day I don't know how I did it the first time.

I'm 35 years into my life as a quad. I have regular bone density tests (sort of regular), as we quads have a tendency to have weak bones, particularly in our lower body. I take medication to strengthen my bones and try to take lots of calcium and vitamin D. I do this even though I still see myself as indestructible in many ways.

The reality is that I'm going to continue pushing my limits, and I'm sure I'll fall again. I don't know how to live any other way. But I'm going to have to acknowledge that I'm getting older, and that it just makes good sense to keep the body in the best working order possible.

*postscript: the cast has been removed :)

release

Your life is packed with extras, and I hope for you that they are mostly positive in nature. You will likely find some things take their toll on you, both mentally and physically. I highly recommend that you find a way to deal with that, a way to release that pressure. Each of us has a way which will work best for us. Find yours, be it some form of psychotherapy (my preference is art therapy), a good workout in the gym or sharing your thoughts with someone special.

I'm not big on cliches, but keeping it bottled up really isn't good.

heat wave

It's that time of year here, when the temperatures can and are getting pretty hot. Since my blood doesn't circulate as well, my body isn't able to regulate it's temperature as well as it needs to. This means I have to be extra aware of my body's temperature. This advice is based only my experience, and not meant to be professional medical advice.

When I've gotten so hot that I can barely function, I find putting cold wet towels on my body can help. There are spots that I find have a bigger effect, like the side of my neck under my ear. A wet towel around the neck can be great. You may find other spots work for you. I've also found that if I burn myself, keeping a cold wet towel on the burn can have a dramatic effect on the burn. Be sure and keep the towel damp and leave it on 10-15 minutes.

Meanwhile, enjoy the weather, and be careful when you're around sources of heat :)

limits

As you 'grow' into your new life, you'll find there is no road map. What you can and can't do will only become clear as you test your limits. Sometimes pushing yourself may hurt.

A few years into my disability I went on a canoe trip, where there were 4 quad and 4 non-disabled participants. Things were carefully planned, and having had my own canoe in the past I was excited. But we weren't prepared for a storm that came in overnight. We got caught in a heavy rain storm and the temperature dropped quickly. When we made it back to the main camp, I huddled close to a small heater in the cabin. What I didn't realize, is that although I was cold and wet, while leaning on the heater the heat was going through my heavy sweater and burning my arm. The next morning I woke up with 3rd degree burns on my arm. Looking back on it, what I remember is that I survived, and was proud that I tested my limits.

And it makes for a great story :)

when?

I'm as stubborn as they come, and this stubbornness has been a huge part of me getting as far as I have. Not giving in can be a good motto... most of the time. Today I was trying to get some chicken slices out of the fridge to make my lunch. My technique wasn't working. So the smart thing would have been to try something different, but I kept trying the same thing over and over. You guessed it, each attempt got me more and more pissed off.

Sometimes, it's good to know when to accept defeat and move on...

ughh

I went in for an eye exam this morning, and it was my first time seeing this doctor. She was asking the usual questions to open my file, birth date etc, then asked 'how's your health?' I answered 'fine', to which she gave me a look that suggested 'but your in a wheelchair'... so I said 'quadraplegic'.

A quad's work is never done....

RSS feed

I had a comment about following the blog through RSS. Its seems to b working for some but not others. If you don't see the RSS icon on the address line, try clicking on the 'Posts (Atom)' link on the bottom of the page. I hope that helps!

giving back

Even though life as a quad feels like, and can be incredibly difficult at times, you should always remember others have difficult lives as well. Giving back can be so easy and offer such incredible rewards. I remember volunteering at a food bank, where I wasn't sure I could do much as crowds were organizing and packing food. They found me a spot to sit and mark the date on canned goods with a marker. Simple, but helpful. Whatever your level of disability, there is somewhere, some way that you can contribute.

Being there gives you the chance to meet other great people, focus on something other than your problems, make some good connections, feel like you are making a difference, but most of all it just feels damn good.

teacher

Welcome to your new role as teacher. Everywhere you go, everything you do, will likely intrigue someone. Every now and then someone will come up to you and ask you something, like 'how do you manage to....?'. One person at a time you get to contribute to the world being a bit easier for us quads to live in. The more people understand, the less they are fearful, and the more likely they are to invite us into their lives, be it on a personal or professional level.

I just don't know why I haven't been given an apple yet...

quad vs para

Quad, short for quadraplegic refers to the degree of paralysis. It refers to the paralysis of all 4 limbs, arms and legs. Plegia is a suffix for paralysis. The degree that the arms are affected depends on the level of the injury to the spine. For more details, go to http://www.spinal-injury.net/quadriplegia.htm.

A para, or paraplegic refers to someone with who typically has paralysis of the legs, and possibly the torso. For more, go to http://www.spinal-injury.net/paraplegia.htm.

In the world of quads, there can be quite a bit of variety in the abilities. Those with partial arm can live quite independently. These are sometimes referred to informally as super-quads. The exciting thing about discovering your life as a quad is seeing how creative you can be in finding new ways to do things. I'm still finding new ways to do things once impossible. Don't hesitate to take advantage of all the resources out there, occupational therapists, other quads, device catalogs... while the answers may not be exactly what you need, they can start the process of discovery.

laughing

Be ready to be able to laugh at yourself. One beautiful spring day I was out with a friend enjoying the weather along with many others. As he pushed me down the street we were both staring upward at what appeared to be a missing glass pane in an office building. Suddenly I found myself on the ground. It seems we hadn't noticed a fire hydrant on the sidewalk and when my chair stopped suddenly, I went flying onto the ground. People gathered with looks of concern, until my friend and I both broke out laughing at how ridiculous we felt.

the new reality

"You can do anything you put your mind to....". "I knew someone just like you and they are walking now....". These are all things we hear from people who want to encourage us and ease the pain they believe we are suffering, and the pain they are suffering seeing us this way. It's the pain of our loss.

"...if you judge a fish by its ability to climb a tree, it will live its whole life believing it is stupid" Albert Einstein.

The reality is that we are different. We can no longer be judged how much we accomplish compared to what used to be our peers. Yes, you can achieve incredible things if you put your mind to it, but there are going to be limits. The reality is that those limits are unknown, and no one can truly know what they are other than yourself. If you give your all to whatever you do, you can be proud of what you've achieved. It doesn't matter what others think, only what you know in your heart.

choices

Some of you may have heard about the quad who was taken off a Frontier Airlines flight by police, at the pilot's request. From what I can tell, the pilot felt it wasn't safe for the quad to be flying, due in part to the fact he was restrained to his seat, his upper body being strapped in. Whether he was concerned about a potential lawsuit in case of injury or the passenger's safety we don't know.

I've flown many times and often alone. I don't have much back strength and am always anxious at landings, concerned that the forward force might be too much and I'll fall forward in my seat. I don't expect I would suffer much more than embarrassment, and that wouldn't be the first time. I also know that should there be an emergency evacuation, I'd be totally dependent on someone deciding to help me get out. When I fly, I fully accept that if it were to happen I might never make it off. That's the reality of my life and the situation, and I accept it. I chose to live rather than hide from life. This man wasn't given that option. This captain took away the right of that quad to live his life the way he chose. At what point is that decision no longer ours to make?

there will be days

No matter how well things may be going (or not so well) you're going to have 'those' days, and oh yes when they happen you can't remember it ever being that bad. I'm a control freak, no two ways about it, and 'those' days piss me off like there's no tomorrow. If I can offer any advice, it's to just let it happen. Fighting it will (in my experience) just make things worse. It's kind of like tugging at an elastic chord, the more you fight with it, the bigger the snap when you eventually have to let go. Accept the reality that it's there and it'll pass.

I personally find occasionally reacting with a swearword is ok, but if you aren't alone, remember, use the inner voice. Recently on one of 'those' days, I let out a mouthful thinking I was alone in my underground parking. Not the best way to meet a new neighbor....

motivation

Nothing gets you places like motivation. I know it's worked for me. As a young boy I loved going for drives with my dad, wherever we went. As soon as it was legal, I had a drivers' license. I have always loved driving. Once I became a quad, there were a number of barriers to getting back behind the wheel, but the motivation was strong and I still enjoy getting into my car, no matter what the destination.

One of my strongest motivations has always been making my father proud. Throughout my life my father and I have shared more of a friendship that father and son bond. That's not to say he hasn't been tough on me when he had to, because he has. I'm not sure how the desire to make him proud developed, but it's gotten me far in my life.

I remember once hearing about him telling a business associate with pride, how much I had accomplished despite my disability. I still get a warm feeling remembering that. Looking at where I am, I've got some awesome friends, done some good work in my careers, achieved a BFA, MA, and a degree in Art Therapy, have a nice home, a car I love to drive, and it all came from tapping into my motivations. Find yours, whatever they may be and use them to your advantage.

respect

This advice rings true for everyone... show respect. The old proverb (is it a proverb?) 'do unto others as you would have done to yourself' is a great way to live. How we treat people can easily be affected by the situation we are in. Remember, it's no one's fault for the difficulties we face, so when you feel frustrated, don't take it out on someone just because they are there, particularly if they are a friend. Use the 'inner voice' to yell :).

sharing

I've often thought that life as a quad can be very lonely. Don't get me wrong, I've got some amazing friends and family that are a big part of my life. But there are things you go through as a quad that they'll never be able to understand. Like dropping something on the floor, spending a few minutes picking it up only to drop it again. That's how I learned to swear like a pro.

I had a brief chat with another quad today, and it reminded me of two things... first it's nice to be able to talk with someone who has been through some similar things and has a bit of an understanding of what my life is like. Secondly, whether you are a quad or not, we all go through experiences in our life that no one else can truly understand. So I guess something we all share is that we all have aspects of our life that can feel lonely.

finding employment

You're going to want to find employment at some point, whether it's for the income or simply to be productive. You've got options.

You can try finding a busy street corner and a tin cup. I've heard that during the holidays you can rake in some big bucks. The down side is that it's simply wrong, for SO many reasons.

If you were employed before you became disabled, you might have a big advantage, you've proved your ability and you have contacts... that's a big plus.

If like me, this all happened before you established yourself professionally, that can be good, and not so good. You may have some financial benefits as you're disabled, that will allow you to go to college or university. Take your time and find something you enjoy, it makes life MUCH more interesting. Once you're out there looking, you've got the same challenges as others' plus some. Human Resources professionals are trained to see past your disability and look at you like every other candidate. BUT, they are human, and this isn't always the case. Make sure you are as prepared as possible for any interviews. Be ready to answer any questions about how your disability might affect your performance, they have a right to know. If they don't touch on it, at the end you might ask if they have any questions about it. It's the 'unknown' that scares people. When you're looking for a job, try and focus on organizations that advertise as being an equal opportunity employer. Don't be scared to call and ask what they do to make this true in their organization. Be sure you know about access at their location, no point in showing up and being stuck outside.

I've been mostly lucky, working for people who saw what I could offer and made it easy for me to contribute to my fullest. That doesn't mean I haven't felt the cold stare of discrimination. It's ok to be pissed off, but then you've got to let go, and move on.

Good luck!

Questions

There are some standard questions you can expect to hear a lot. 'What happened to you?' 'What's wrong with you?' 'Do you need help?'. How you choose to answer them is your choice, but remember that it is also a reflection of your attitude, and leaves a lasting impression. Most people are just naive, so even if the questions may feel insulting, they probably just come from basic curiosity.

There will be lots of questions coming from yourself as well... and you won't always have answers, but that's ok.

Standing Out (no pun intended)

Being a quad means you're going to stand out, like it or not.  I had some experience with this before as I have red hair. :) But this is different obviously.  Over time you start to get used to it, but there are some days it can be a bit much.  I'll admit there are times when being noticed, and having people comment on how 'courageous' you are can be a bit of an ego boost.  But that can grow old, and it can be tiresome being reminded that you are always having to do more just to participate in life.

The more interesting reactions come from kids, the wonderment in their eyes as they see you and realize it's something new and different.  It's sad when you see some parents who pull the child away and simply say 'don't stare'. Then there are those adults who just stand and gawk at you.  It doesn't happen as often, as today we aren't expected to just sit on the sidelines anymore.

Be prepared though, you're going to get reactions you aren't expecting.  The up side is that each time you're out there doing your thing, that's a few more people who realize that we're willing to do what it takes to have a life.

best and worst

So I'm often asked what the worst part of being disabled is... without hesitation it's having to repeatedly keep tucking my shirt/sweater down my back.  Something about the damn fabric of the chair back keeps pulling my sweaters up every time I move... frustrating!  Whatever problem you might be facing, being able to think creatively will get you far.  No matter how many devices and products there are out there, I've found that they rarely work as well as putting something together that fits my needs, usually with duck tape.  A trip to your local Home Depot can be very inspirational.  I've dragged more than a few friends along on  my expeditions.  You just never know what you'll come out with!  Another great source of inspiration is other quads... who better to know what works.  Don't be scared to ask!

I've have been asked a few times about what is the 'up' side of being disabled... I have to admit the parking is a big plus.  It may sound strange to admit that there are perks, but they are there.  You can hide out in a crowd easily, push through a crowd a la 'bulldozer' style, and when I lived in Toronto, you could actually park in 'no parking' zones!  It's always fun to watch people's reaction when you pull up in a sports car and out pops a wheelchair... lol. 
I'd love to hear some of your stories.... anyone want to share?

Day One

Welcome to my blog!  I thought that it was time to put my 35 years experience living as a quadraplegic to some use.  Through this blog I hope to be able to share some of my experiences, my learnings and some humor as well.  I hope you'll feel free to post any comments, questions or experiences you would like to share. I promise to be as open as I can about everything I've been through, and I can assure you it's been anything but boring or dull!