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!