A Letter to Santa

I recently recieved an email with a letter to santa from a little girl with Spina Bifida. I found it very touching and wanted to share it with you. and i definitly agree with the wish to have a whole year with out any surgeries!

Dear Santa,

Don't bother to bring me your usual gifts,
These days they don't bring me the slightest of lifts.
I'll even pass on the Christmas with snow,
Latest of gadgets and gizmos from Ronco

You can keep all the jewelled bangles and balls,
And even all your Cabbage Patch dolls.
Here's what our family this year places on order,
For delivery when you come over the border.
Please read it and tuck it away up your sleeves,
Then pull it out once again on Christmas Eve.

Give us a shunt that stays connected,
And doesn't even get infected.
May its flow not ever turn sluggish,
Nor it's tubing ever get plug-ssh.

Two kidneys staying healthy,
Would make us feel wealthy.
As a matter of fact,
Make that the whole urinary tract.

Can you make a spine that will stop its curving,
Listen, I tell you, it's really unnerving!
A whole year without a single operation,
Is what we need to feel jubilation.

Please put your elves right to work,
Inventing an IV that don't hurt,
A spinal cord that won't ever tether,
And a wheelchair that's light as a feather.

Can you put to rest all my suspicions,
That our insurance won't cover pre-existing conditions.
And please help our doctors develop an appreciation
For our endless list of question after question.

Another thing I wish for around the clock,
Is a disabled parking space on every block.
And while you're at it, we'd like a vacation away,
That would last for a least a week and a day.

I could go on and on in a similar vein,
With lots of ideas that would take away pain.
But the chime of the clock just make me realize,
That it's time once again to catheterize.

If you think there's entirely too much that we need,
And if it seems to you that we're chock full of greed,
Actually when you get right down to it,
Any one of the above would just about do it!

Decorate the Season with a Daisy

In the last few months so much has happened that puts many individuals with disabilities in the lime light. And for a change it's been the good kind of lime light. There is Lazy Legz the Canadian break dancer (who is absolutely amazing by the way) who has incorporated his crutches and his incredible upper body strength into this amazing art form. There was the first wheelchair back flip this summer. Wheelchair dance itself is becoming an intriguing art form. And yesterday i was swept away at Balancing Acts 6, the first disability arts festival to come to Edmonton. We watched a documentary-"Shameless: the ART of Disability", filmed by a famous Canadian documentary directer Bonnie Sherr Klein. She had a stroke and has spent the last twenty years adjusting to the world of disability. And what she found was a world of some of the most incredible talents and artists. And I was honoured that they shared their stories and their art with us through the documentary. There is also a new wave of comedians who have disabilities and use those disabilities to enhance their comic sketches, and they are some of the most talented comedians I have ever seen.

I could say much more on this topic and will at a later date. However I bring this up now because this year SBHANA (the Spina Bifida and Hydrocephalus Association of Northern Alberta) is launching an awareness campaign this Christmas to honor people with disabilities because of the incredible talents they have, and to encourage members of the association and other individuals with spina bifida and other disabilities to realize their full potential. Not only does the rest of society have a lot to learn about spina bifida and other disabilities, but so do the people who are affected by it. We need to celebrate disability this Christmas and all of the amazing things we are learning from it culturally instead of just scientifically.

To kick off the campaign we are encouraging everyone to buy a daisy magnet to wear on their bumper. (vehicle bumper, or mailbox, fridge, any where you want it, show it off!) Each beautifully designed magnet is weather proof and guaranteed to last through out all the seasons, and strong enough to be put on any vehicle.

For more information on the campaign and information on how to order a daisy for you and anyone else interested (they make great stocking stuffers) you can visit www.takeaction2006.ca

Celebrate ability this Christmas and help the SBHANA decorate the Season with a Daisy!

Looking beyond the “Label”

a wheelchair princess story.....

Picture the latest “Never Stop Milk” commercial. See the black and white images of ordinary people having labels like “geek” or “nerd” or “loser” fall slowly to the floor. While the people move forward, and the labels get swept into the trash. Now, picture those same images next time you are on a busy downtown street or a hallway at school. The homeless person sitting against a building now becomes just a person who is tired resting for a minute as other people rush by. The person in the expensive coat and perfect hair rushing past you is not a “rich snob” but just a person in a hurry. The boy with long hair and big glasses and pants too short for him with his nose in a book is not a “geek” or a “loser” but just a boy reading a book. You see that the person in the wheelchair, perhaps struggling though the snow but still refusing your help, is not a helpless “disabled person” but a person in a wheelchair who is determined to be independent. When you start to take away the labels, you “see” the people before you “see” the labels. Perhaps the busy person will have time for a quick smile, or the boy with the book will look up and see a friendly face. And perhaps the person resting against the wall, really is just tired, and if they happen to not have a place to live having one person see him or her as a person will go along way to making him or her feel like a person again.

I believe that if people took a little time to see the people before the labels a whole new world would open up for them. Perhaps some one will see the young man at their school who walks with crutches, not as the boy with crutches but see beyond his awkward gait to see his warm smile, and notice that he has fairly built upper body, a positive effect of using crutches most of his life. Start to notice that he is kind of cute and realize that he takes his time to talk not because he is “stupid” but because he puts a lot of thought into what he says so that every sentence has purpose and meaning. Qualities that I think quite outshine the fact that he uses crutches to help him move around so he can do the things he enjoys doing. He may always be labeled as “the person with crutches”, but the first step is already being made because you are putting the person before the disability.

I am a 25 year old woman who uses a wheelchair. I have always been “disabled” but I haven’t always used a wheelchair. I use my wheelchair now because it makes my life easier to live. I do have elbow crutches and use them when I can, which in the snow isn’t often. I find the chair more convenient, it makes it easier to carry things and I can move around the city more efficiently then without it. It makes me more independent. I used to label myself as a “wheelchair user”. However as I became more comfortable with myself, my wheelchair became just a method I use to get around. While it is part of who I am, it is not ALL of who I am. It is because of this that I find the idea of “labels” interesting.

I was recently allowed to partake in an experiment in my dance class. My dance class is made up with a few individuals in wheelchairs and a few more individuals who don’t use any mobility aids. In this class all of us have learned that we can move beyond our own boundaries. For those of us in chairs we are learning how to use our bodies and our chairs to make beautiful movements and interesting forms of art. For those who don’t use chairs they are learning how to get to know the people in the chairs like they would get to know any other dancer. One time we put them in chairs, and they learned not only how it is like to use a chair but how the chair is just another tool to be used to make a dance. In this recent experiment we were asked to wear medical face masks over our mouths. But before we put them on we were told to label them with something we felt we were but didn’t want others to always label us as. I chose “silly”. I don’t care if people call me disabled anymore because I know I have a disability and I am learning how to own it, even in its changing conditions. Other dancers used labels similar to “nerd” “meek” “insane” “butch” and one individual in a wheelchair did use a word similar to “gimp”. The interesting thing about labeling yourself that wearing that label over your mouth as you go about a regular activity is that you start to forget about the label, or you incorporate the label into your movements. You learn to take ownership of it. You may make “meek” movements, or you may begin to think of ways that you can adapt to seem not as “meek.” It makes you really think about it. And the important thing to remember with this exercise is that we label ourselves. These were things we worried about, labels we felt we needed to address within ourselves. Even after the experiment was over, I still think about the word “silly” and how that label makes me feel and how I want it to make me feel. I’m not sure what affect the exercise had on the other individuals in the class but I do know a few girls asked to take the masks home, so I know that I did have some impact on them.

I ask you to think about labels not because I think that we shouldn’t have labels. Labels will always exist. We give them to ourselves and we give them to others. We label our fathers and our mothers, our friends and our acquaintances. We live in a world full of labels. But do they always have to be the first thing we see? If all the labels dropped off every individual would that change how we view each other? I believe that it would. So just experiment one day. Walk around and look at each person you see. Really look at them, before you look at the label they seem to be wearing. You never know what you will discover, about others and about yourself.

To Be or Not to Be....SILLY

I am by nature a very silly or quirky little girl. And cute. Or at least I've been told I am cute most of my 25 years on this planet. I've even been told 'I'm the cutest cute that ever cute'd'. Now you have to be cute in order for someone to come up with something that bizarre. I'm cute because at 25 I can still wear pig tails and pull it off. I'll probably be able to pull off wearing pigtails when I'm 50. That's not an easy feat, let me tell you. In fact i hardly know anyone over the age of 23 that can pull off pigtails. For a more sophisticated yet still way to cute look, I use the side ponytail. I have very straight blond hair, so it doesn't look like the 80's side ponytail don't worry. I'm cute in the way a toddler is cute when they pout about something they just can't seem to figure out. And I get excited like a 5 year old when they start really comprehending the world around them, and trust me I talk just as fast too, sometimes faster. However no matter how annoying it is to be called 'cute' lately, these are traits I have had my whole life. Not everyone has seen them because they never took the time to get to know me, and I wasn't often comfortable enough to relax enough to let my natural silliness out. Then especially in University it was the inability to relax that hindered me. Now as I've gotten older and started to find myself, I find myself being more openly silly. I buy crazy cool socks because I LOVE them. I joke around more often in front of strangers. Bring up topics like History and global change and come up with theories on why things are happening in the world in the same conversation I talk about crocheting or baking. I'm involved in the community and working on projects that will help effect social change. In all of these things, while a huge part of who I am and sort of made up of who i have always been, I was NOT like this just 4 years ago. Either I was not comfortable enough in my own skin or with the people around me, or I just spent my energy in other ways. Like on homework or theatre projects, which while cool, I'm not quite sure how much an impact they have had on society. They did however have an impact on me and have helped develop who i have become and will always be a very large part of my life. My disability and the drastic changes in my mobility have also had a huge impact on my life.
So now while I finally feel like I'm becoming a person I will be proud to be and proud of, I feel I have reached a sort of crossroads in my life. My natural silliness, sometimes referred to as 'cute' is starting to become a liability. It has started to overwhelm my appearance and my behavior. It is effecting my ability to be taken seriously. And now is the time I want to be taken seriously, because there is a certain amount of seriousness, intelligence and a lot of hard work involved in what I want to accomplish, and for that I need to be perceived as a serious, intelligent and hardworking person. Otherwise I won't get far because an advocate needs to be taken seriously, to a certain degree. I already have the social impressions people have about disabilities and blonds working against me, and inorder to counteract them I need to be extra convincing, and I'm not finding that to be that easy.
All of this begs the question: To Be or Not to Be Silly? If silliness if a part of my charm, it would be 'silly' to temper it so much that it ceases to exist, however I need to be able to show my intelligence and capability as well. Now the easy answer is just to learn when to behave composed and when to just be myself. Not an easy task. Not at all. I'm not cute like a 5 year old because I want to be, I just am. I'm extremely expressive and that part of me won't change. I can learn how to slow down my speech and spend more time listening to others instead of always adding in my two cents. However my mouth is having a hard time communicating with my brain these days. I feel like my brain went into overdrive after not being used as much as it should have been over the last three years when i was dealing with my health problems, and now I can't slow it down and because of that I can't even shut up. I've been told this is just a part of growing up and transitioning and that everyone goes through it. Though some how I feel like I have to go through it over and over again and I just never fully catch on to the concept. Maybe it's like cooking. I used to suck at cooking or at least I didn't enjoy it much, hence I never did it. However, over the years I've been forced to cook for myself and others and learned at times how to cook good food and what recipes I liked, and what was fun and what wasn't, then i would stop needing to cook for quite awhile and have to relearn all over again the next time i had to cook for others or throw a party. Now I am known as quite a good cook, and people look forward to eating my food more then going to eat out at a resturaunt and I even occasionally enjoy myself. :)
So I guess somethings take practise, lots and lots and lots of practise.

The Brothers Grimm Twelve Dancing Princesses

For those who have never read the real fairytale; it is one of my very favourites.


The Twelve Dancing Princesses

There was a king who had twelve beautiful daughters. They slept in twelve beds all in one room and when they went to bed, the doors were shut and locked up. However, every morning their shoes were found to be quite worn through as if they had been danced in all night. Nobody could find out how it happened, or where the princesses had been.
So the king made it known to all the land that if any person could discover the secret and find out where it was that the princesses danced in the night, he would have the one he liked best to take as his wife, and would be king after his death. But whoever tried and did not succeed, after three days and nights, they would be put to death.
A king's son soon came. He was well entertained, and in the evening was taken to the chamber next to the one where the princesses lay in their twelve beds. There he was to sit and watch where they went to dance; and, in order that nothing could happen without him hearing it, the door of his chamber was left open. But the king's son soon fell asleep; and when he awoke in the morning he found that the princesses had all been dancing, for the soles of their shoes were full of holes.
The same thing happened the second and third night and so the king ordered his head to be cut off.
After him came several others; but they all had the same luck, and all lost their lives in the same way.
Now it happened that an old soldier, who had been wounded in battle and could fight no longer, passed through the country where this king reigned, and as he was travelling through a wood, he met an old woman, who asked him where he was going.
'I hardly know where I am going, or what I had better do,' said the soldier; 'but I think I would like to find out where it is that the princesses dance, and then in time I might be a king.'
'Well,' said the old woman, 'that is not a very hard task: only take care not to drink any of the wine which one of the princesses will bring to you in the evening; and as soon as she leaves you pretend to be fast asleep.'

Then she gave him a cloak, and said, 'As soon as you put that on you will become invisible, and you will then be able to follow the princesses wherever they go.' When the soldier heard all this good advice, he was determined to try his luck, so he went to the king, and said he was willing to undertake the task.
He was as well received as the others had been, and the king ordered fine royal robes to be given him; and when the evening came he was led to the outer chamber.
Just as he was going to lie down, the eldest of the princesses brought him a cup of wine; but the soldier threw it all away secretly, taking care not to drink a drop. Then he laid himself down on his bed, and in a little while began to snore very loudly as if he was fast asleep.
When the twelve princesses heard this they laughed heartily; and the eldest said, 'This fellow too might have done a wiser thing than lose his life in this way!' Then they rose and opened their drawers and boxes, and took out all their fine clothes, and dressed themselves at the mirror, and skipped about as if they were eager to begin dancing.
But the youngest said, 'I don't know why it is, but while you are so happy I feel very uneasy; I am sure some mischance will befall us.'
'You simpleton,' said the eldest, 'you are always afraid; have you forgotten how many kings' sons have already watched in vain? And as for this soldier, even if I had not given him his sleeping draught, he would have slept soundly enough.'
When they were all ready, they went and looked at the soldier; but he snored on, and did not stir hand or foot: so they thought they were quite safe.
Then the eldest went up to her own bed and clapped her hands, and the bed sank into the floor and a trap-door flew open. The soldier saw them going down through the trap-door one after another, the eldest leading the way; and thinking he had no time to lose, he jumped up, put on the cloak which the old woman had given him, and followed them.
However, in the middle of the stairs he trod on the gown of the youngest princess, and she cried out to her sisters, 'All is not right; someone took hold of my gown.'

'You silly creature!' said the eldest, 'it is nothing but a nail in the wall.'
Down they all went, and at the bottom they found themselves in a most delightful grove of trees; and the leaves were all of silver, and glittered and sparkled beautifully. The soldier wished to take away some token of the place; so he broke off a little branch, and there came a loud noise from the tree. Then the youngest daughter said again, 'I am sure all is not right -- did not you hear that noise? That never happened before.'
But the eldest said, 'It is only our princes, who are shouting for joy at our approach.'
They came to another grove of trees, where all the leaves were of gold; and afterwards to a third, where the leaves were all glittering diamonds. And the soldier broke a branch from each; and every time there was a loud noise, which made the youngest sister tremble with fear. But the eldest still said it was only the princes, who were crying for joy.
They went on till they came to a great lake; and at the side of the lake there lay twelve little boats with twelve handsome princes in them, who seemed to be waiting there for the princesses.
One of the princesses went into each boat, and the soldier stepped into the same boat as the youngest. As they were rowing over the lake, the prince who was in the boat with the youngest princess and the soldier said, 'I do not know why it is, but though I am rowing with all my might we do not get on so fast as usual, and I am quite tired: the boat seems very heavy today.'
'It is only the heat of the weather,' said the princess, 'I am very warm, too.'
On the other side of the lake stood a fine, illuminated castle from which came the merry music of horns and trumpets. There they all landed, and went into the castle, and each prince danced with his princess; and the soldier, who was still invisible, danced with them too. When any of the princesses had a cup of wine set by her, he drank it all up, so that when she put the cup to her mouth it was empty. At this, too, the youngest sister was terribly frightened, but the eldest always silenced her.

They danced on till three o'clock in the morning, and then all their shoes were worn out, so that they were obliged to leave. The princes rowed them back again over the lake (but this time the soldier placed himself in the boat with the eldest princess); and on the opposite shore they took leave of each other, the princesses promising to come again the next night.
When they came to the stairs, the soldier ran on before the princesses, and laid himself down. And as the twelve, tired sisters slowly came up, they heard him snoring in his bed and they said, 'Now all is quite safe'. Then they undressed themselves, put away their fine clothes, pulled off their shoes, and went to bed.
In the morning the soldier said nothing about what had happened, but determined to see more of this strange adventure, and went again on the second and third nights. Everything happened just as before: the princesses danced till their shoes were worn to pieces, and then returned home. On the third night the soldier carried away one of the golden cups as a token of where he had been.
As soon as the time came when he was to declare the secret, he was taken before the king with the three branches and the golden cup; and the twelve princesses stood listening behind the door to hear what he would say.
The king asked him. 'Where do my twelve daughters dance at night?'
The soldier answered, 'With twelve princes in a castle underground.' And then he told the king all that had happened, and showed him the three branches and the golden cup which he had brought with him.
The king called for the princesses, and asked them whether what the soldier said was true and when they saw that they were discovered, and that it was of no use to deny what had happened, they confessed it all.
So the king asked the soldier which of the princesses he would choose for his wife; and he answered, 'I am not very young, so I will have the eldest.' -- and they were married that very day, and the soldier was chosen to be the king's heir.

The Twelve Dancing Princesses

well not exactly twelve, and hopefully not all princesses, we may one day get a dancing prince as well (cross your fingers)

What I'm talking about is wheelchair dance. I love it! I joined a dance class a month or so ago and the very first day i was pretty skeptical going into it. The few live examples i had seen didn't impress me much and i wanted so much more from it. I can't tell you what that MORE was because i didn't know, but i wanted to be able to get something out of it. And that very first day I did. I came home just buzzing and excited and filled with possibilities. Not for dance but for what dance could mean to me. What it did mean to me to move around the space in my chair (which at the time was a decent trial chair with good seating) and i used my body for the sake of exploring movement and my brain started experimenting with different movements and with different movement i could do with the non wheelchair dancers in the class. It was a different pathway into a world i fell in love with in high school. I loved the theatre and i enjoyed acting. i had no illusions about being a good actress but the 'act' of rehearsing and practicing in a way that makes your creative brain work, that i love. But in order to be a good actor you need to be versatile. With a limp and always being the slower movement wise then anyone else i knew i wouldn't make it professionally and i wasn't sure i wanted to do that professionally. So i learned all the backstage stuff, and I loved that too. I miss doing tech for shows, or even doing props or costume running crew. And i really miss assistant directing. Directing was great too. but i loved being able to observe what a director wanted then using a different perspective help mold the actors toward his or her overall goal. I was good at that, I am still very good at that. But with very ailing health I had to leave that whole world behind for quite some time it seems. Now I have moved on and found other very important purposes for my life, but i will always love the theatre and be constantly inspired by it. This Dancing class has given me a way to exercise my body, interact with people in an intimate way that you only can find in arts productions. And it has given me a physical outlet for my creativity. I didn't expect this to happen in fact i didn't even know it was possible. But it is and it just makes you think about all those possibilities out there that could perhaps be possible after all.

So now I am a dancer and a board member for a new pilot dance class. This year it is aimed specifically at people with spina bifida. Many people met at the national conference this last September and many have been amazed at the great people we met with similiar conditions, and how everyone can be considered an inspiration. And now we are working hard to keep that connection and offer it to others. We had our first real dance class today. It is way different then the other dance project I am in. This class is aimed to teach skills as well as explore the skills we already have. It is great because it's slightly more structured yet still explorational. today many of the exercises frustrated almost all of the dancers including myself. Though i have incredible persistence when it comes to stuff like this, i love stuff like this therefore i don't give up easily i find pleasure in the challenge. Just like many could compare that to their dedication to other sports. What i like about this class though is that we can encourage one another. So even if none of these girls decides to continuing dancing after this year, i hope they take with them the love and support and encouragement they got from everyone else. It may give them to courage or the persistence to try something else they really like, or to try to find something that they really connect with.

Everyone I met so far in both projects have been amazing. Each with their own endearing qualities and wonderfulness. Not only did i find a doorway into a world where i can express myself, i entered a doorway that gives me the opportunity to meet some truly amazing people. And as much as i like the instructors who aren't in chairs, the girls who didn't know anything about chairs are amazing because of there excitement to learn about them, to play with them and bring new life to the project. They don't see me as disabled anymore they see potential instead. And i get to meet the amazing girls in chairs, or who have spina bifida but have accomplished so much, and have the most amazing and fun personalities. My life feels like a much brighter place because of my opportunities to work with these great people.

So I am hoping this is just the beginning of the tale of the twelve dancing princesses...

Definitley Not an Ice Princess

really really not a fan of ice....

So I am sorry to report that winter has officially set in. Winter Jackets, gloves scarves and sweaters have all come out of hiding and my chair brings lots of muck with it from the outside. I love my winter jacket and my scarf. I really need new winter gloves because my fingers are freezing off when I'm outside, but that is also fixable. My only complaint really is that my current chair sucks period. It is awful trying to wheel through sludge and snow and ice, and do you think people EVER properly shovel the sidewalks? HELL NO! Oh and people think that it's polite to start pushing me. Instead it scares the hell out of me. I'm already irritated about winter taking away some of my security outdoors, and when some unknown person starts pushing me they not only are violating my personal space but they are further enabling me. I don't want to be dependent on someone to push me. or have it appear that i need it. My life is filled with so many amazing things right now. and I'm working on so many projects that are very important to me, and I'm in two wheelchair dance classes that are just an incredibleexperience. I feel free and like the world is my oyster for almost the first time in my life. So i may get a little bitter at anything that threatens to take that away from me.

However instead of sitting here being miserable about the snow like i have in years past, I started baking. So far i made a brownie cake, and banana bread. There's a pumpkin loaf recipe that looks really appealing i might try next. The oven keeps my house warm and baking is a nice distraction. And my friends aren't complaining. My belly might start so i need to make sure i don't eat to much of what i bake. I promised the OT who helped order my new chair i wouldn't gain any significant amount of weight so i could still fit in the chair. As good a reason as any to stay slim i guess.

So while i am not a fan of winter I'm not going to let it get the best of me, and I'll just keep busy until spring only 8 months away.....the winters are way too long here.

Happy Winter!

an unforgivable crime and an unforgettable survivor

A 14 year old Winnipeg boy with Spina Bifida was pushed and locked in a burning shed by 3 little girls and boy all under the age of 12.

When the story was first related to me, i was horrified, but i was also under the impression that the boy had died. He survived, after spending at least 5 minutes in shed hearing the kids dancing and taunting him on the outside. Parent's in the building complex finally came to the boys rescue. The boy's name is Brian McKay, remember it. He may have Spina Bifida but he proved yesterday that he was survivor. Just like so many individuals with Spina Bifida are survivors. While what happened to him was most definitely a crime against humanity, it only proves that now more then ever that individuals with disabilities need to step up and own their disabilities and learn to be proud of themselves and proud of the community they belong too. So many kids and adults with Spina Bifida slip through the cracks, and many feel unloved and outcast by society. Not just in everyday life, but in the disabled community as well. I should know i was one, i did slip through the cracks. I knew nothing about my disability, and it was easier to let kids pick on me because of it. How was I to know they were wrong in being ignorant? How was i to know that having a disability doesn't automatically make you a lesser member of society or weak. Brian McKay says in the article i have linked to this site that "his legs were too weak to kick down the door." I don't think that makes him a weak person. I mean he tried didn't he? He even tried to make friends with people in his neighbour and it's just sheer ignorance and intolerance that led to that horrific act against him. Neither him or his disability have any blame in the events that occurred.

We need to make the world more aware of the strength and vitality a person with a disability has. That A person with Spina Bifida has. It was for that reason that i started this blog in the first place. Not just to show the struggles i go through trying to cope with the sudden and gradual changes my body flung at me, but also to talk about my successes as well. To prove to myself and anyone else who is willing to listen, that I can be ANYTHING i want to be. I may have to go about things a bit differently, recognized my limitations and finds ways around or over them, but they aren't walls just obstacles that i am willing to tackle.

So I want to applaud Brian McKay for surviving. for talking to reporters, for making his story known. And i want him to never stop fighting or moving forward. There are quite a few people out there in this big wide world who just assume we will out of sheer ignorance. And i think it's definitely time we start proving them wrong. Not by starting to not give up on life but to keep showing them all of the millions of wonderful people who never do and never have and never will. The people who inspire me the most are persons with disabilities. Not because they have accomplished show much inspite of their condition, but because they have done so much more wonderful things with their lives then people who don't consider themselves disabled. Maybe it's because they thrive off challenge, and so called 'normal' people don't feel challenged so they are the ones that give up.

So i hope you read Brian McKay's story, and get your friends to read it, and they get their friends to read it. It is a story that should not be forgotten, and should serve as a bright vivid reminder of how many more challenges WE MUST overcome, because incidents like these should not happen, and it will take every individual that cares to stop it from happening over and over again.

Happy Thanksgiving

It has almost been a month since my last post! I feel like i haven't really stopped moving since then. I came out of my depression then went warp speed ahead. i suppose it is really hard to be depressed when you have very little time to think. Here is a list of some of the things i have accomplished in that time with a very short summary which i intend on expanding on later.

• National Spinabifida Conference 2006: It was held at the Fantasy Land Hotel in Edmonton, and was a weekend full of so many events and sessions, a few emotional breakdowns, a very cute photographer, a whole bunch of just completely amazing people i am so glad i got to meet, and accumulated Sunday with a whole bunch of happy tears. and i don't cry happy tears very often.

• I discovered that my friend Devon can actually be a very nice guy at times. Also discovered i really hate being locked in Bathrooms. First at a Sushi restaurant, and the next a flooded bathroom stall at a super store!

• I went out to Karaoke with some older friends of mine and had a Blast. My friend is an amazing singer. too bad everyone else really sucked!

• I planned Thanksgiving dinner for my roommate/ best friend, his fiance and their parents who haven't had a chance to meet until yesterday because they live out of town in opposite directions.

• For the dinner i made a 30 slide timed presentation with pictures, video, music and stories for the happy couple.

• I figured out how to fit ten people in my tiny apartment.

• Made a Scarf for my friend and mentor Roxanne that looks like a green and white ribbon for spinabifida because she never had a chance to get any special necklaces or flowers at the conference and since she did an amazing job MC'ing the whole conference and being a wonderful friend i needed to do something nice for her.

• I finally sent off an entry to this poetry contest in the city, i don't really think i will win, but entering is half the battle.

• I've spent a lot of time with my boyfriend and sometime at his school getting to meet some really nice people and attend a few sessions on this big conference the school has every semester. It was very religious based and a tad overwhelming, but after sorting out all the information, i did find some very valuable pieces of information. which is always a good thing.

• I have been working very hard at Physio. though every time i got there is I'm not having troubles catching an accessible bus, i have some sort of body ailment. a sore neck, a sore ribcage and more recently a sprained foot.

• I GOT A TATTOO! it's a very stylistic dragonfly and most of the scabbing is off now and I LOVE IT! and it's located on the very front of my right ankle:

• I am in this interpretive wheelchair incorporated dance class. I have only gone twice now but I am thoroughly enjoying the chance to move around and use all different parts of my body while also moving the chair and feeling the rhythmic movements of the wheelchair. the personal human interaction is also quite amazing. In my chair i build a bubble around myself, but in this class you have to break down those barriers, but in a very safe and very accepting environment. I've noticed that it is helping me break down that bubble in my outside life as well.

• I will also be on the steering committee to bring a wheelchair dance program to Edmonton, and I'm very excited about that.

• I went to a seating clinic for my chair. and after using my beast for a whole week, which was awful, i was given the test chair back, slightly modified and with really great seating! so hopefully my chair will get ordered this week and i will get it with in six weeks, cross your fingers! i also have to give this chair back on Tuesday and go back to the beast until my new one arrives :(

• My Physio who is helping me get funding is back from vacation so we can work on getting the last $600 i need for my boots.

• I have had a ton of doctors appointments, and i still haven't had an MRI to see if my surgery is actually working because it got overlooked in the paperwork over the summer. So hopefully i will get that soon!

• Oh and finally i spent all week and weekend cooking and organizing and cleaning and finally hosting a huge thanksgiving dinner, and everyone left happy and excited so I count that as a great success. my friend's dad is also going to show me a book on event planning that he uses when he caters events, and he caters a lot of events. So i think he thinks i have potential! yay potential!

• And today i get to spend at my boyfriend's curled up on his couch watching movies and drinking tea, while his mom cooks another turkey dinner. And I think i have a very good reason for wanting to stay out of the kitchen! As it is I'm bring over lots of leftovers!

so that is the short version of why i have been lax in updating my blog! i will try to be better in the future.

oh and if you want to see something really cool check this out:

First wheelchair backflip - Summer 2006
http://www.youtube.com/watch?v=o7f1Aa-Y1x0

The Sky is Falling

Ack! I've been so caught up in being sick dark gloomy and depressed or and there was the shopping (oh shopping how I love thee, too bad I'm now so utterly broke!) that I failed to notice the rain of little golden leaves all over the street. In fact my big beautiful lush green tree outside my window is starting to develop little golden clumps of leaves admixed is foliage. The weather is starting to drop and while it's not suppose to rain today it is suppose to rain for the rest of the week. Fall really has come, school is back in session for those who are actually going back to school this semester, which unfortunately is not me, and that can only mean one thing, winter is right around the corner. Heavy Jackets, tons of layers and skin that won't see the light of day for 8 whole months. Now I'm not exaggerating unfortunately, Edmonton is a lovely city in the summer, but it winters are dark and gloomy and so very very long. And trust me for any mobility challenged person 8 months of winter is not something to look forward too. Especially if you don't drive. My crutches become absolutely useless, because if it's raining then they track the wet inside and I slip on tile, the same goes for snow and don't get me started on ICE!

So really these bits of beautiful golden leaves falling over my quaint city street may indeed be beautiful, but it represents 8 months of doom and gloom. So really it's doing nothing to get me out of my dark mood. Sigh.

Though I do have some nice new clothes and a cute pair of shoes my boyfriend got me. He was tired of my slippers falling off me feet all the time, so now I have shoes I can wear when I'm just in my chair that actually stay on my feet and look adorable at the same time. So that's something to be joyful about!

For anybody who actually reads my blog I'd be really interested about finding out what makes them joyful in the Fall. Maybe the more joyful things to think about will help lift me from the dark place I feel like I'm residing in. So post comments please! (pretty please? With sugar on top?)

Stupid Little Pea: the modern day princess and the pea fairytale

Maybe there is something to the fairytale "the princess and the pea". Lately I've developed a habit for buying beds. It almost seems like an addiction, Because really who buys 2 beds in one year? In fact two beds less then six months apart from each other? Nobody but a princess I think. And only a true princess would get so sick and tired of sleeping on an incredibly uncomfortable make your bones ache bed that she'll run out and purchase a new one and be done with the problem. But why 2 you ask? Because for some reasons this princess sleeps on two beds. One at her house and one at her boyfriends house. Now being a very incurable romantic princess she loves her boyfriend very much, so the easy solution to hating his mattress which would be to just stay at home and sleep on her recently purchased very comfy double bed complete with pink sheets, a baby blue duvet with pink and red flowers on it with matching pillows and a few bright red cushions for texture, is very unacceptable. So instead of leaving the boyfriend to suffer on his very old roll you right in to the middle, squeaky, and not very soft queen size mattress, she decides to look for a new one. And to her outmost delight she happens upon a huge mattress sale at a clearance center. And to her even greater excitement finds a bed she could just fall asleep on right in the store and refuses to get off of. Especially after the salesperson was reluctant to put it on hold for her because the mattresses were disappearing at a very alarming rate. So partially due to her impulsive nature and her strange new mattress addiction(fetish?) and partially because the thought of sleeping on the old bed again gave her nightmares, she bought the bed almost right on the spot. So now she could spend many comfy wonderful dreamed filled nights snuggled up to her prince charming in their new queen sized bed. What will they do with the old mattress you ask? I don't anything but keep it. There is no way she is going to another night tossing and turning just because some one wants to hold onto a relic of the past and has no room to keep it. No more PEAS! And of course any true princess (define the word how you wish) would give up her prince just because a little pea is driving her crazy, instead she finds a much better way to solve the problem, and find her happy ending and have incredibly sweet dreams.

One Chapter Ends and Another Begins

"...And the paperback princess wakes up to the cool autumn sun shining through her open window, not quite awake she yawns and stretches and sits up to greet a brand new day and a brand new season. She stays in bed for a while not quite wanting to give in to the end of the relaxing summer of love, hot muggy days full of whim and fancy and the last smells of kettle corn and green onion cakes in the air. However like any true princess she recognizes her responsibility to herself and her kingdom. So she climbs out of bed, ready to work hard and welcome the smells, sights and sounds and new experiences that await her in this new season of her life. She brushes her not quite long enough blond hair and picks her best princess dress and tries not to climb back into bed."

So now I'm 25 years old. And I feel 25 years old. And sometimes when I look in the mirror I look 25 years old. Not because I look old, or have wrinkles, but because my hair is done just so, and my outfit I put on to go to physio shows a certain sophistication I definitely did not have a few years ago. A sophistication I didn't think I would ever fully achieve. I like looking good, and I love clothes. But despite all of that, I've always had a artsy flair to my appearance which has been aided by a certain rumpledness, not quite perfection that can be my charm and undoing. As a kid my mom gave up trying to keep me clean and tidy very early on, where as my tom boy cousin, could jump in mud puddles and never have a hair out of place, or any mud or dirt stains. So I've always figured some people have it, and some people don't. But lately when it matters and sometimes when it doesn't, that rumpledness has turned a tad graceful. When I visit with aunts and uncles and my grampa and his sister, they keep commenting on how good I am looking and how I seem to have everything all together, or they think I'm looking so beautiful because for once in my life I seem to be getting things right. (they don't actually say it that way, but I like to read between the lines). So I have to admit I just might be growing up a little, but I still like to splash in mud puddles.

I started physiotherapy a couple of weeks ago. I was referred to this small clinic by another physio I greatly respect so I went and tried it out. It's pretty great so far. I can take a bus that's only a few blocks from my house to a bus stop that's right outside the clinic, and I only need one bus ticket because I can use the transfer to get home. I'm cheap and poor, so things like that are great. The thing I like best about this place besides the physio's there and the fact that they also do acupuncture, is the people that go there. Some are old, some are young, some are middle age, but the one thing everybody has in common, unlike the people who got to physio in a hospital setting, is that they all want to get better and be more active. And that's very important to me, because I want to be more active, and I want to get as much mobility back as I can, and in a positive environment I believe I have a much better chance at succeeding. During my first session I was sweating bullets just to stand up straight in the bars, stretching out my body that is used to sitting in a chair all day. By the next visit I was able to balance for a few seconds, something I haven't been able to do for a while. And two visits after that we timed it, and I got up to 45 seconds. I had to build up to it, and I was shaking like a leaf but I did it! It may not seem like much progress but to me it's like taking leaps and bounds. Next week I'm determined to stay balanced for over 50 seconds and hopefully in two weeks I can hang in there for at least a minute. I think these are good goals to aim for. It's good to have goals. Physio is completely draining me though. My body aches all over and I have to take long naps after each appointment, but I think it's also effecting me mentally. I've been losing things I feel I shouldn't lose, and having panic attacks because of it, and the mess made by tearing my house apart looking for them. Then of course way after the fact I find them. Though I only find them because even though I've calmed down, I still feel the need to keep looking, and I recheck things and keep thinking of places to look even though I had looked everywhere, and then the object appears! But I don't feel relieved or anything, I feel pissed off at myself for freaking out at not finding it. I blame it on the end of summer. I can feel it ending and the air cooling down, and I'm dreading another long dark winter in this city. So the stress builds up and I break down over things I should be able to handle.

Yesterday I missed my bus and got stuck in the rain for over half an hour. I was very close to cancelling my appointment and going home. But then I thought that if I gave in to a little rain, how the hell would I survive in the snow? So I stayed and got rained on and splashed on by the cars zooming by. But I stayed and that's important.

So goodbye summer and hello to a very busy and tiring and hopefully rewarding fall!

End of Summer Meloncholly

This Place

This Place, this sad joyful place

The summers come and gone

Kettle corn smells hang in the wind

And a single rain drop falls on my palm

All are outside looking in, inside looking out

In this place old faded and weathered down tents

Well used, flap uselessly empty muddy

In the chill of the autumn air

Green leaves turned to gold

And children’s laughter muted

Behind cold glass window pane

I do like this place when it’s so full, so free

But gone like the hot muggy August sun

For the long sleep, this place all empty streets

And a single rain drop hits my nose

Soon turning to soft snow and wistful memories

Sun will come back to this lonely place

To fill a year’s worth of crowded catharsis

In only a few short teaming months

While we wait with baited breath till it’s release

Roommates, test chairs, tree roots and 'that time of the month'

Even princesses have bad days, in fact I think they have more of them. And they whine about them more too, that's how they become 'princesses'. Or at least that's how I was crowned. Luckily they are somewhat lovable so they aren't lonely princesses, at least most of the time.

I'm not quite sure how lovable I've been the last few days, especially if you asked my poor roommate, whom I've barely seen yet has still managed to bear the most of my 'royal' temper, funny that. The sad thing is he hasn't real done anything wrong, or at least differently then usual, I have just had no patience for him whets so ever, and have no excuse for it at all except that I have my period, and have felt all that social. So really nothing to do with him at ALL! He hasn't even been around, he's been working extra overtime so I see him for a very short time between when he gets home and when he goes to bed. I'm just acting like a "princess" to put it very politely. And I do feel bad or I wouldn't be writing about it at all.

Some times when I get into funks like these I can pin point reasons, like I'm in so much pain, or I'm so stressed out, or I'm not happy with my life, or I'm lonely and feeling locked up. Well I am in a little bit of pain, but it is a lot less pain then I have had in awhile, except for my lower back which is discover long lost muscles. Who would have thought practicing wheelies in my test chair, would help strengthen core muscles that I'll need to start learning how to stand up again, let alone walk. Crazy. Anyways back to the topic...I'm quite happy with my life, I love my boyfriend very much and though he isn't perfect,( but who is?) he makes me joyful, fills my heart with joy. There are stresses in my life but they seem easier to cope with, or that I finally have ways of coping with them, so I don't feel so lost, I feel like I can sort them out and move on.
I guess everything just sort of fell into a peaceful lull, of which I am DEFINITELY not accustom too and I decided to become a spoiled brat for a few days. Would it help if I explained that my 25th Birthday is coming up next week? I am so excited for it, like I am about all birthdays, but I might be pushing my 'it's my birthday and I can cry if I want too' limits a little to far. At least where my roommates concerned anyways...

But I do have my test chariot..er wheelchair, and for the most part it's great! I was at a park on the weekend and was rolling all over the grass and over tree roots and even starting to learn how to balance wheelies...Not so good at that yet. But I have the baby walkers on still for a very good reason. I think I would have flipped over a dozen times by now. I have a tendency to overextend so I end up doing wheelies at the silliest times, like going up hills, and over stuff. And I have very little control over my wheelies so you can see where this is going. But the reason I brought up the baby walkers was to tell you when they aren't such a good thing. They aren't a good thing when you are happily riding over tree roots going "weeeeeeee" and then they get stuck on a set that's just perfectly their height. So your sitting there creating skid marks in the dirt feeling dumb because two seconds ago you were showing off and now you are quite and hopelessly stuck and need a friend to bale you out. Thank goodness for friends...Who only laugh at you in the most lovingly of ways. I also took the chair out for a spin by myself today. I took my usual route downtown and was having a great little ride, and I was amazed because it took very little effort to move around, unlike my other beast which had my arms aching after half a block. In fact the hardest thing was getting back into my apartment, different chair... Different dynamics. And the best part was that I found some paperback novels I had been looking for at the used book store!

see I really am the paperback princess...And a dork, who turns 25 in ONE WEEK!!!! Remember that it's important! At least I think so...

oh and thanks to everyone who has said nice comments about this site, I hope you keep liking what you read.

The Art of Child Carrying

The most wonderful gift in the world is that of a child. Which is very hard to believe if all you have to go on is all the brats you see outside or doing silly things in your building. And also hard to believe if you ever remember being one. I know I was a brat. I had two older brothers who taught me well.

This new insight came to me after spending a weekend with my niece. I've always loved my niece but living so far away from her hasn't given me very much time to get to know her at all. So this past holiday weekend my mom brought her up, and the 3 of us girls had a weekend of play and fun. And I can go on and on and on and on telling story after adorable story about my nieces antics. I never claimed that she wasn't a brat, but she does have a heart of gold to go with it. And with out even trying she helped me on my quest to find better ways to do things, my quest that will help release the bonds that bind me. And this new lesson I learned was the art of Child carrying.

My niece is only seven, cute as a button and only 26 pounds. After the first day of swimming and walking to go get dinner and back she was complaining that her leg hurt. I took the cue from my mom that she would be ok. (I really know nothing about raising kids, but I am eager to learn). So for fun I dug out my old cane that I hobbled around university with, set it too it's lowest setting and gave it to her to play with. I swear every time she was home she used it too!
The next day she was still complaining of a sore leg, so she asked me if she could ride on me. I have done so around the house just to play with her, but to actually have her on my lap while we were out and about well this was entirely new for me, so I was willing to try it. So once we left my apartment, I told her to climb up and she settled on my lap, and I put my purse in front of her making a nice convenient seat belt. And it was a lot of fun wheeling her around. I still wish I had my new chair, because it would have been easier, on me, her and the chair. Oh and my back...ow. So while I got a lot of exercise wheeling around with an extra 26 pounds balanced on my lap, and my mom had to walk to keep up with us, my niece got a free ride! And she loved it. Every time we were going somewhere she asked if she could ride on me, and I'm a sucker for being called 'Auntie". Now this new art of child carrying is quite useful. It shows that you can still help a child, play with a child, and at farmers markets its a good method of keeping them from running away. Mothers on the other hand, are quite a different story...did there have to be so many jewelry stands?

Even when I could walk, I've always had trouble looking after and carrying babies around, let alone toddlers, or kids. My balance was way more precarious then theirs was. That has always been a sore spot for me, and probably a reason I have never really allowed myself to get to close to children. But now a whole world of possibilities has opened up for me. As long as the child is strapped in, in some way, probably tighter for babies, but loose like a purse strap for seven year olds, their are many ways to look after and play with kids while being in a wheel chair. And you still have pretty much free range of motion to wheel and make corners. It's a pretty amazing experience. Though because not only are you carry extra weight, you are also balancing, so your lower back muscles take quite a lot of strain. Having good back support would be crucial if you were planning on doing this for more then a few days, and even after a few days, all I can say is "ow ow ow".
The best thing about my niece is that when she came up here she knew nothing about disabilities or wheelchair's or anything. But instead of being annoying and asking dumb questions, like "why can't you walk" in a high and mighty voice, she actually tried to understand the whole process, and asked interested as well as interesting questions. For example she wanted to know How I turned in the chair. So I actually had to take the time to consciously think about how I did that. And later when she was playing in my chair she tried it for herself. She also wanted to know why I didn't like the chair I was in and wanted to know the differences. So when we met up with a friend of mine for coffee who gets around in a more efficient and better looking chair, she made the point of asking if my new chair would be like that one and we proceeded to talk about why that style of chair would work better then this one.

and that brings me back to my first point, a child is a wonderful gift. They see the world through fresh eyes, and bring joy and perspective to a world that was slowly slipping into darkness.

A shiny new chariot!

Yesterday I went wheelchair shopping for the second time in my life. The first time felt like something a kin to a nightmare, but unfortunately real. I was overwhelmed and being told what I needed, without even knowing anything about chairs, and nobody was answering my questions in anyway that made sense at all. And the result is this big beast of a chair that I'm sitting in now. Which wasn't what I ordered exactly but after 5 months of dealing with one mess up after another, I just took what I was given.

But one good thing has come out of my decreased mobility. My status as a wheelchair user has changed which puts me in a category where I can get a much much more efficient chair, one that suits my new and growing independent and active life style. In addition to that I have people working with me who actually understand my needs and were there to help explain the things I will need and the difference between a whole bunch of options, so I could test out and make informed decisions about the new chair I wanted. I am by no means an expert on chairs, and probably won't be able to give anyone advice for some time on the best chair for them, but at least with this new chair, I will actually be able to learn HOW to use a chair. Learn how to hop curbs, go down hills, off road it. Take stairs (if I absolutely have to), how to carry things. You know wheelchair basics, the stuff I wasn't taught when I got this chair. The lady that put me in this chair designed it so I could get fat and lazy and have other people push me around. I have been pushing myself around outside in this chair since February, even in snow, and that's a feat in itself, because not only is this chair not designed for that type of use, it also uses up way more energy, and strains muscles that don't have to be strained.

So trying out these new shiny chairs yesterday was amazing, especially when the wheelchair technician adjusted the dump of the seat. It felt like heaven. Or at least heavenly. With this new chair, not only will it be way easier for me to be more independent and active, and it will have added features, like crutch holders, and a bag carrier on the front, that will aid in that, I will also look more presentable to the public, I will look disabled, yes, but some one who has mastered that disability and who is capable. Employers will look more favorably on someone in a nice active chair, then, a big dumpy grandma chair. The reason, the active chair shows some one able to work, to be efficient, who has it together and doesn't mind hard work. A grandma chair shows someone who is lost and dependent on others, some one who doesn't quite have it all together.
So after three hours at Eco Medical, we put together a chair that I think will be amazing to use. I added on a bunch of extras that healthcare won't pay for, but the physio helping me, is also helping me apply for funding so I can have those nice extra features. The extra mountain bike tires would be really great to have, because then I won't feel as nervous about going camping or doing a ton of outdoor things that were a crucial part of my childhood that I have sorely missed these last few years being locked up in my tower with my old grandma chair.

So at last I'm getting a chariot suited for a princess! I can't wait!

more adventures of the paperback princess

Finally out of her lonely tower, the Princess finds a soapbox and calls out loudly to anyone who will hear…

I have spent the last few years feeling like a princess locked in a tower waiting for a prince charming I knew would never come. I knew this because deep down I knew that the only person who could break the bonds that kept me locked up and lonely was myself. In February I was introduced to a few inspiring women with similar conditions to me. They are active members of society fighting to improve living and working conditions, as well as better treatment centers for adults living with disabilities. The world assumes that, as adults, we know what we are doing and we no longer need on-going treatment. In my case - and many others - this is just not true. I just had my third surgery in three years. While the outlook is good that I may see drastic improvement this time (or at the very least stability in my condition), no one can be entirely certain. They can only be hopeful and optimistic. These women I met gave me the courage to break out of my lonely tower, even in the middle of winter. I decided to go tanning. This came as a surprise to the girls at the tanning salon, who have never had a wheelchair client before, but they were always helpful and friendly. I had to wheel three blocks in the snow to get to the salon. It may not sound like very far, but in a chair with no traction, and arms not used to moving myself about long distances, it started out as an extreme challenge. After a few times, however, I began to revel in the experience. This was something I could do on my own for myself, and it made me feel better. Not just because I was getting a tan, or the badly needed vitamins you can only get from sunlight or artificial sunlight, but because I was finally taking a step to being independent. I also went to a concert with a good friend of mine. While we couldn’t dance, or even see the stage because I went in my wheelchair, it was a new experience for me - a wheelchair user - to experience a concert. I have experienced a few concerts as an able-bodied person, but not since the loss of the use of my legs. At this concert, which I went to in March, I was still treated like a person and everyone was quite friendly. So, while I could have wished to actually see the band on the stage as opposed to the screen on the back of the stage, this experience gave me the confidence to do more and more on my own.

Spring came and then melted into summer. Even with my surgery, I have felt like a new woman: a woman with a purpose, and a woman who has the potential to be independent. And that aspect has added a whole new dimension to my life that has been missing for years. I’m not less than human because I lost most of my ability to walk. It is like the new mayor of Vancouver, who is paraplegic, said: “There has to be a better way.” And then he found one, and look where he is today,: in one of the best places to be to instigate change and promote awareness of those with disabilities, and to prove to the world that we are human and people and capable just like every one else as long as we are given a chance. We might not be able to do things like a fully able bodied individual, but there are other ways to complete the same tasks; better ways. So, I have been finding better ways, and have worked toward them. Many of them are financially out of my reach, but with carefully planning and funding, I will reach my goals. I will find stability, and work my way toward a place where I can affect change.

The hardest part about this new awareness and this new experience is discover how often people with disabilities are treated more like liabilities than people. It’s heartbreaking. I went to a concert on the weekend. It was another Hedley concert, with the same friend. This time it was on an outdoor stage, part of a new summer concert series here in Edmonton called Ed Fest. I was excited to go. In fact, everything started out great: we didn’t have to wait in line and my friend and I were ushered to the very front of the stage where at least four other wheelchair users were already waiting with their companions or friends. They were so excited and happy. Some of them haven’t been allowed to even attend concerts before, and here they were - and given a place where they could actually see the stage and the band. It really was awesome. Security warned us there might be some jostling, but if we thought we were fine then it was OK. So we waited in the hot sun for an hour and people crowded behind us, but they are all friendly and excited too. One family brought their little girl, so we let her stand beside us, so she could see the stage and not get pushed around. The first warm up band starts: Murder City Sparrows. They were a good band with tons of energy. It was incredible. It felt like being at a real concert. We even got soaked by the giant hose, and loved it. If the whole night would have been like this, it would have been one of those good unforgettable experiences. Not only for me, but for all of the other wheelchair users lined up beside me, many of whom do not get the chance to get out at all. Most of them are locked away in their own lonely towers.

However, things did change. Security guards starting talking to some of the companions, and only through the grape vine do we hear that we were probably going to get moved before Hedley comes on stage, so that we don’t get hurt by the fifteen year old girls rushing to the stage. Honestly, the people behind me weren’t going to rush the stage, or let anybody rush past them, because they had a little girl to protect. That, and my chair, and all of the other chairs could have handled some jostling. There were some heavy duty chairs. Plus, we were all low enough that they had a great view anyways. But none of those facts mattered. The only thing that mattered was that we were liabilities and they could get fined or have a law suit thrown at them for us being there. So, the parents, companions, friends and people in the wheel chairs argued. I could see them arguing, trying to understand why the security people were being so rude in their dealings with them. Apparently, security threatened to throw them out if they didn’t cooperate. However, after much more arguing security conceded to try to get us a consolation prize for being sent to the back. I hate consolation prizes. Now, the reason all of those ‘apparentlys’ were thrown in there is because NOBODY talked to me. I was completely ignored until after the crappy second band was over. Then, we were told - on no uncertain terms - that we were being moved. For the first time in months, I felt like I was being treated like a dog, or something else less then human. The security women yelled at my friend for looking at her, and the other security guard I tried to blow up at, saying nobody talked to me or asked me my thoughts on the matter, just stood there uncomfortable and said nothing while I cried. Again I felt inhuman, not even worthy of being talked to or consoled. My chair doesn’t define who I am and it doesn’t say anything about me, other than “this person uses a chair to get around.” However, some people just don’t seem to get that. So, all of the wheelchair users and friends were moved around to the other side of the stage behind the crowd gathered there. “See,” they said, “you can still see the stage.” And, when I didn’t move up closer, they asked why. Well, if I moved up closer, I wouldn’t have even seen the stage. Just little girls bums, which isn’t my idea of a good time. After I calmed down, I was able to talk to the other people who got moved and I finally got the whole story. Also I found out that our consolation prize was that we get to meet the band after the show. The show which would end around 11:30, after spending the whole day in the sun, and a band who would only see us cause they felt sorry for us. Sorry that really is NOT my idea of fun. I talked to a 14 year old girl in an electric wheelchair. She was so mature, and rational about the whole thing. She admitted to being upset and crying, but she calmed down, like myself, and tried to look at the whole picture. She was a very smart young girl and if I had talked to her on the phone I wouldn’t have even known there was something physically wrong with her. She was brave and intelligent. These are the things people don’t see. The security people only saw our disabilities, not the people behind them. Also, another piece of information to note was that after we were moved, security completely left us alone. They didn’t see the additional crowds of people that stood in front of us, making it more and more difficult to see what little of the stage we could. And if they did, they really didn’t care. By 11 o’clock, I was getting tired, and the band was almost over, and I wanted to win my boyfriend a giant care bear before the fair closed - not to mention get something to eat, because we hadn’t eaten since 2. So, we left and laughed because we could have heard the band just fine from the fair grounds, and would have saved ourselves the trouble of being harassed. Its days like these that only reinforce my need for independence and my need to make myself heard. Everyone needs a voice, and it is very apparent that some very intelligent people who happen to have challenges that can be labeled as disabilities really don’t have one.

So I am now getting out of my lonely tower and stepping onto my soapbox. It is time to no longer feel helpless.

Just a little evidence

ED FEST: A fun event for All?

Our View of the Stage
for the warm up bands:
up close and personal, the people in the wheelchairs
off to my left were extatic that they could finally see the stage

Hedley: the Main Event

Apearantly we can come for the show,
but not get to see what we came for

 

Kals' Korner: Crazy Sunday.

Kals' Korner: Crazy Sunday.

Every Time I Turn Around

Well it's official, I'm an adult! At least I must be because everywhere I turn I find another person just got engaged. By the end of next summer I'll be one of the few single people left in my group of friends. Not that I'm not excited for everyone, because I really really am. I want my friends to be happy. I think the big deal is that everyone is moving on and drifting away. As it is we are already spread out in western Canada and rarely see each other, and as much of an incurable romantic as I am, I guess I just got used to the everydayness of life, which included dating and getting jobs and finishing school. And while I got used to that way of life as I went on my own rollarcoaster ride with my health, time sort of slipped past really fast. Now I'm sitting here realizing that all my friends are 24- 29 years of age, and that is actually a good responsible age to get married and take the next step in life. The adult step of life I guess. Even looking at my own life I see signs of adulthood all around me. I have a nice apartment, I'm growing herbs on my balcony, I'm planning a career, and a life with my boyfriend. I throw dinner parties, and rarely think of going to the bar. I still enjoying having a good time and I love good wine. But I don't miss the emotional rollarcoaster of University life anymore. It was fun, and I will always have my memories, but some of the stunts that we pulled seem so far away and so immature. 18 year olds have become a joke to laugh at. And all of this happened with out me even noticing it. I know I will always be a kid at heart, life wouldn't be the same if I wasn't, and definitely not as much fun.

I talked to a friend of mine the other day, and she, of course, is engaged. I asked her why I seemed to be the only one freaking out that life is changing so fast. Her answer was that everyone is a bit freaked out about growing up, but because we are so spread out, we had to deal with the panic on their own, and by the time they had a chance to talk to other people, it stopped being such a big deal. Which I guess makes sense, a lot of people internalize panic, and deal with it on their own. I, on the other hand, externalize my emotions and anyone can read me like an open book.

It also may have something to do with control to a point. There is a lot of my life I have no control over. My disability for one thing has been controlling my life for at least 4 years now, and I have had to learn to organize myself around the ups and downs it takes me on. So in my mind I have set up static buffers, things I can count on, solid good rocks that will always be there. My close friends have been those rocks. Things I can hold on to, so I don't get swept away with all the crap life throws at you. But now those rocks are changing. They are getting their own rocks, and getting caught up in their own lives. The sensible part of me knows that they will still be there, but they will be changed. Everything will be just a bit different, and I need sometime to get used to the change.

The silliest thing is, is that I want to get married someday. I want a life and maybe a small family. I want to move on and explore new places and new adventures. I want to see where life will take me. I am excited for that! So why am I panicked that everyone else is doing the same thing? I guess I just need time. Time to get used to being grown up...yikes!

eight days of hospitalization...

It has been two weeks and two days since my operation and I'm still alive and kicking. I have a splitting headache and the repairs they are doing to my balcony that started the day I was discharged really really really don't help. So since I didn't write anything in the last two weeks I thought that the best way to record the surgery was to break it down from the beginning day by day.

June 26, 2006: Day 1: Surgery

We woke up at dawn so we could be at the hospital by 5:30 am. It was a crisp clean and refreshing morning, the kind of morning that makes you mildly regret never getting up and out that early in the morning..Ever...Unless your forced to. We got to the hospital on time and I had to change out of my clothes into those ugly gowns that don't hide much and then we began to wait. At approximately 6:30 or so (I don't remember exactly I was pretty tired and nervous) they took me away to the operating room. My beautiful boyfriend held my hand until the big doors that they wouldn't let him pass, I was taken away into the abyss of the operating room. This time the room was very well lit, almost too well lit, and despite that I didn't have my glasses and I can't see with out them, I had a fair idea of who was talking to me and when. A few of the residents introduced themselves to me, and one of the stayed by me until they put the IV in my arm and pumped the anesthesia in. And of course when that happens everything fades very quickly.


The next thing I know is that I'm in the recovery room with a nurse sitting beside me and a nice doctor asking me questions. Making me say where I am and all that jazz. Apparently I didn't pass because I heard quite clearly the order to get me a bed in the ICU. The nurse stayed by me saying my name every time I drifted off to sleep to wake me up. Apparently what has happened was they put a whole new shunt into my body so they used my left plural cavity to drain the fluid, instead of the right one which already has a shunt in it. My lung slightly collapsed and I stopped breathing every time I started to fall asleep. There was no beds immediately available in the ICU for three hours, so I stayed din recovery until than, but I don't remember much. When I finally got to ICU, My Aunt and My roommate was there as was a bouquet of flowers from my boyfriends parents. I remembered them being beautiful but not much else. I was only allowed two visitors at a time so they traded off for a while then they all left except my boyfriend so I could sleep. (my breathing had evened itself out). I don't know how long he stayed exactly but I do remember drifting off to sleep while he held my hand. It was a wonderful feeling to have a warm touch to calm me down after the confusion and the pain of the last few hours.

Day 2

I had a very nice nurse throughout the night. His name was InIn. I remember that because he said it was like 'out out' only with In instead. It made me laugh.

I remember the day through bits and pieces. I slept though most of it. But I do know I was in so much pain everywhere, and I couldn't move barely at all. And they had to keep switching me from side to side and propping my back with pillows. I had about 12 pillows in ICU. My Aunt was there too. She is a nurse at the same hospital, and she was working so she visited me during her breaks and fussed over me, making sure I had the things that the other nurses forgot. She was like a mother who always fusses over their kids when their sick, but one that actually knew what to do. It was a huge comfort to have her there. I think my headache started that day. But it was overshadowed by everything else.

When my roommate came later my aunt was there, and they had me laughing when my Doctor came in and was so excited to see me doing so well. I was so confused by his assessment because it was the only time that day that I felt mildly coherent. But I always get confused in the hospital because every one keeps telling me contradictory statements. They also switched me out of my private room and I was bombarded with all the noises of the ICU and the hyper nurses that are so hard to understand when you have no idea what's going on.
My boyfriend held my hand while I slept again that day too. Then he left and my headache really started to hit me. I didn't sleep well, everything was so noisy and confusing. The nurses all had different accents that I couldn't place because I had trouble thinking. So when everyone came in the next evening to see me I wasn't doing very well at all.

Day 3

I got an email letter from my brother. Apparently you can send a friendly greeting to a patient at that hospital if you have a little bit of info about them, though the messages have to be positive.

My headache turned into a migraine. A low pressure headache, the nurses said I had a sinus infection, but didn't do anything about it, then the doctor said it wasn't and told me that it was a good sign and that it will last for quite sometime. I was not happy to hear that. My roommate tells me that I could barely talk, or at least that I talked so quietly that it was very hard to hear me.
The only reason I was still in ICU with all the noise and the psycho patients was there were no beds in the ward I needed to go to. That and I was still a tad high maintence. I hadn't left the bed yet and could barely sit up, and they still helped me turn over. I was able to talk for small amounts of time and follow conversations for just as long. They did take out the catheter that day, which made things awkward because I self Cath and I couldn't do it in bed, so the nurses had to cath me. Do you know what is stupid? That it is hospitals that teach you how to Cath in the first place, and tell you what supplies and what type of catheters to use, and then when you are in the hospital they rarely have latex free catheters and nothing in your size and they can't order yours in! Tell me where the logic is in that.

I learned how to separate myself from myself when they cathed me, and also when they cleaned me up. I still hadn't washed my hair since Sunday night. My hair was so greasy that it stuck in all directions. But I was still in the state of mind that I really didn't care to much. I wanted to be doing better but I also really wanted to sleep.

The physio people sat me on the edge of my bed, and I was so dizzy I could barely do it. So after a few minutes I laid back down, and my roommate read to me and talked to me. He took the day off so he spent the afternoon with me, and it was great to have him there.

That night was the worst, because all the nurses were fighting with each other, only I couldn't understand why, or what was going on, except that my bed was a no nurse zone, because my nurse had to go through enemy lines to get to me. I was ready to get out of the ICU, and all the lights and noise that just grated through my skull. And my head felt like my was going to explode.

Day 4

The physio people came to visit me again and got me in my chair. It was so hard to sit up and I was so dizzy. I was taking a lot of gravol at the time to try to fight all the nausea that came when ever I moved. But I did slowly wheel around and they showed me where I would transferred to later that day.

So I think it's easy to say that you've been in the hospital way too much, when all the nurses remember you and you get put in the same room and bed that you had the first time you were in that hospital.

But I didn't care, I was about to get out of the ICU into a much more subdued environment! (or so I thought) My aunt came and washed my hair, that felt sooooo good. And I was finally able to keep things in my room. And I was more coherent then I had been in a long time. And I did manage to sit up in bed for longer periods of time. And I could turn myself, even though it did hurt, but I could still do it, and I wasn't giving up an ounce of freedom. I was tired of being sick and out of it, so I was determined to get better. Everyone was supportive and proud of me. And I had more color to my cheeks.

then everyone left and I realized the most horrible thing. MY ROOMMATE SNORED. She snored so badly that again I didn't sleep much and my migraine was even worse. And the nurses kept leaving lights on, and I just wanted to be in pitch black and noise free. UGH!

Day 5

Ever have one of those days where you just wanted everyone to go away? Well that day was one of them, and the day I got the most visitors because they could finally do so because I was no longer in the ICU.

I started getting up to go to the bathroom myself, fighting the nausea each time, then I ate very little then had a nap. Lots and lots of naps. Moving took a lot out of me.

It was nice to finally see people but they kept coming.

So when everyone left I blocked out everything cause I finally got earplugs and was left in peace and quiet, and I just slept and slept and slept. I had the wierdest dreams, but it was so nice to actually have some peace.

Day 6

it was like I was a new person I could transfer easily and I finally got some fresh air. And I got to spend time with my boyfriend. He was so happy to see me doing sooo much better. And well I still felt drained, I could still fight through it, it was great!

My roommate bought me food and I had a chicken Quesadia, and I devoured it, well most of it, I got full fast. Not eating much for a week will do that to you. It was soooo good though. But then it's not hard to make anything taste better then hospital food.

2 crappy things did happen though. My breathing got worse, and my potassium levels were very low despite all the potassium they were shoving down my throat or through my IV.

The potassium thong was scary because one nurse told me if I didn't get my levels up my heart would stop beating. That's a little harsh and by far a worse case senario, but I took my potassium and I ate bananas. But it still wasn't going up. And they wanted to send me home Monday, and as much as I wanted to go home I want to make sure I was safe first.

That night was the first night that I was bored and restless. And my migraine dissipated into a low pressure headache, so still annoying, but I could tolerate normal noises.

Day 7

Sunday Sunday Sunday. I got to shower all on my own it felt great. That and I got a chance to look decent for my boyfriend who was coming to visit me around lunch time. I was very much looking forward to this visit because we could actually go outside and get fresh air, and talk. I hadn't felt like talking too too much the past week, and I finally had a chance to show him how much better I was doing. Only just before he got there my cheerfully adorable nurse came in with three bolusus (bags) of Potassium she wanted to pump through my IV site. And she said it would take three hours. Nothing like pumping a chemical into you arm that burns for three hours to make a girl happy. However I was able to fanagle an hour out of her as long as I took one big fat horse pill of potassium first.

So enter my boyfriend looking adorable. Wearing a color he hates but that I think he looks good in. Now that's love. We went outside to the Magic Tree. It's an open courtyard that they are slowly improving to give sick kids a place to feel comfortable. We sat by the magic tree and hugged and kissed. It was nice to be kissed. I usually don't feel sexy when I'm in the hospital, so being kissed helps take away some of that "I don't feel remotely desirable" mentality you can get stuck in away. Not that I think that people should go around kissing patients. But loved ones should take the time to hold hands and kiss cheeks, and significant others should kiss their loved ones in the hospital from time to time when it's appropriate. It really does help the healing process. When you are sick it's easy to get depressed by your surroundings, and knowing that people care for you helps keep you out of that funk. For the most part anyways.

So back to my boyfriend. hehe. It was a nice hour, which we finished off by playing with stuffed animals in the gift shop. He is so cute with them.

I was feeling really sad when he had to leave, I missed him so much that I couldn't wait till I was better so I could see him more often.

So it was back in my room took get pumped full of crap. So while I was stuck on my bed I began to write to my best friend. When it was done it was 6 pages long.

I think the biggest adventure of the day was when I got my chest XRay I was taking sown to the elevator with trusty IV pole, and once in the elevator, we were told to get out it was being taken over by STARS. So we got to go hang out on the STARS floor. Luckily the other evaluator wasn't be hijacked so we eventually got down to XRAY. My adorable aunt started making fun the people who needs stars on the long weekend, and it didn't help that they were in full dirtbiking gear. Her name for patients who get injured on the longweekend, is Darwin patients because someone was doing something stupid whether it was them or some one who hurt them, in order for the injury to occur in the first place. I find that funny. I guess when you see people get hurt stupidly time and time again you become a tad jaded.

Oh and Sunday really was productive even though I felt crappy, because we also found out that an old friend/ old roommate, just had a heart transplant surgery at the same hospital, so we tracked him down and we got to visit briefly, it's hard to visit in ICU cause only two visitors at a time and they kick you out regularly. But he was looking good for a boy with a bunch of tubes inside him. It's very hard to feel sorry for yourself when you know that a friend just went through something worse. Or apparently worse. I mean I have to admit though I really don't like to at all, that spinal surgery is really nothing to scoff at. I could have died, if I had stopped breathing. And having a hollow spinal cord, filled with water or no, is still pretty scary. But I refuse to admit it. :)

Day 8

My last full day in the hospital. The only reason I wasn't released then was because we want to make sure my potassium levels were normal again. And have one last check up from the doctor to make sure I could move around easily enough so I would be okay at home, and that my lungs were fine. Which they were mostly. I get fluid bubbles in the chest cavity that hurt like hell, but that's a good thing, because that means the shunt is working. In fact everything, the headaches , the nausea, the tingles in my legs bum and tummy, are all good pain. pain that shows I'm healing.
Well all that good pain made me feel like crap. I spent most of the resting and trying not to get sick. I did Have a popsicle with one of my aunts and my cousin who's a nurse who was working that day. It was nice but I wasn't feeling very social. So instead I packed up all the stuff I wanted my roommate to take home...Which was quite a lot. And spent the rest of the day feeling ill. My boyfriend was feeling Ill too so he curled up on my bed and rested with me. It was nice. And none of the nurses complained so that was good too. I was allowed to leave as soon as I had a ride and my paperwork filled out the next morning and boy was I ready to leave.