Three new posts, an Anniversary and learning to fly sitting down

Three years ago I came back from the fencing competition where I collapsed. About today I started using the wheelchair full time. If I make it to May it will be the anniversary of when the people working on me thought I was going to die. I was more active back then, and so, ignoring that all the speed limit signs in my body had been removed, I ripped down hills and switchback corners. So when I finally said, “I don’t feel good” – Instead of fainting, I would just, stop breathing. These days, I still go past my limits, but in different ways. I wrote about it a bit in my post on the postcard project.
Plus the post has a kick-ass typewriter.

Right now, I focus on the short term goals. Getting to tomorrow. And getting to Sakura-con, to do the Times Colonist 10K and get to the start line. To get to the finish line. To get to the day AFTER the TC 10K. Then there is summer. Yeah, Linda is unemployed and applying.

She told me she has written a blog post on Sakura-Con on ‘A Girl’s Gotta Fly’ and she would really like you to read it. It is here. I haven’t read it. She just said that if you are confused the ‘paypal’ button is on the er…..right a part way down. I assume that is my right.

All I know is that I am selling books and DVD’s and stuff. And I am fever free (except for 4 hours) for a week now. Next goal: exercise – I am going back to boxing and badminton.

I won a Kodak film contest division about ‘Life in a Wheelchair’, a division not about work or family but the rest. The prize came in a big box. It is unopened.

The winner was the picture titled, Fly or Fall. I said that for me, every wheelchair user has to work out for themselves how they will see and how they approach life from a wheelchair.

For me, it is always flying. When I fall, I drag myself. Even having to rest every couple pushes going uphill it is flying, because I am out there trying. What is impossible? That which is never tried. Getting up the hill isn’t impossible, it just is damn hard some days. Yeah, there are lots of things that are impossible but if I had to do it all over again...I would have ordered the double thick titanium axles. Why NOT fly. Okay, it takes more risk, more energy, more planning, and has a higher probably of something interesting happening (which might or might not involve hospitalization). So where is the down side?

I am not wheelchair bound: I am learning how to fly sitting down.

Hawaii Aventures 09: Day 1 - flying to Honolulu and Waikiki

Sometimes before we can reach the sublime (surfer, famous beach, warm waters, sunset). We must suffer through the perils! Yes, that is me, tongue stuck out and on oxygen. Me not like little metal bird! Want off!

Here I have just cleared customs and my hands and feet have been swabbed to make sure they are not explosive (and they kept trying to make me take the concentrator apart and I kept going, "It IS a concentrator!") (hey, I tell you what they tell me. I didn’t mention the episode of McGuiver where he turned a titanium bike into a bomb and I have titanium wheelchair!).

After asking about getting a refund for an attendant seat, we were all three moved to bulkhead. We asked if we could have a seat for the medical equipment. But they just told us to go to the gate. We arrived at the gate 5 minutes before boarding, and was told to wait, then someone else came and told me that I was 12 minutes late and thus must wait until the end. And that because I had oxygen we did not have bulkhead seats but the row behind. Here were are in the second row. Bulkhead people had an extra seat, the row next to us had an extra seat. But us and our friends like an oxygen concentrator and ice break packs, we are all still smiling for some reason. No word yet on the free seat yet, odd that.

We drove to the lookout before going to the Japanese Temple. This was our first OFFICIAL Hawaii tourist act. Cheryl gives it a TA-DA! (though my navigation we got a wee lost and arrived at the temple gates a few minutes too late to even take pictures of it – grrrr!).

Linda had said on the plane that “I would like a Mai Tai on Waikiki Beach” – well, what Linda wants, she gets, so back to town we came, ahead of sunset and we wheeled down to the beach. Noting along the way that when it comes to tourist spots, the saying is true: Build it and they will come!
I found the beach, and before Linda and Cheryl could stop me I found the sand, indeed I was so far out I was almost stuck when they caught up to me. But here we are, at Waikiki Beach at sunset, now how Hawaii is that?
After a shoulder roll out of my chair and a bit of flopping about, I got us the, ‘oh so sweet honeymoon’ picture of Linda and I, thanks to Cheryl’s photography. In fact her camera came out with this beauty, even at the dusk of post sunset, which is probably one of the screensavers I will use. Ahh...the memories...which I won’t have by then.

Of all of us, only Cheryl actually went into the water, and said it was “Warm” so I would want to try it, I think. However, the waves and amount of people going by her to surf indicates this may not be the best beach for ME to try.
I bet you think I forgot about the “Mai Tai on the beach” – no not I! We went over to CheeseBurger in Paradise (which Cheryl assured us was a famous song) and got ourselves…a cheeseburger and a Mai Tai.
The food was really good, and really filling, but the humidity of the place didn’t exactly decrease the humidity outside. Still we enjoyed the food and the location and if Linda wants it, Linda gets it – “Mai Tai, on the beach in Waikiki.”
As I wheeled out of the restaurant, the die hard surfers were heading home. This woman, changed from wet suit, had a rig hooked up to her bicycle to hold her surfboard, as she came down probably nightly and on weekends. When even the die-hard surfers come in, it is time to go.

So under the full moon we wheeled home, exhausted, but already planning a new day, one that involved the terror the ancient Hawaiians could never have thought of….yes, San-X, otherwise known as HELLO KITTY! But that is for tomorrow.

Making preparations for flight and a challenge!

I could tell you that I have been resting and pondering since the last post (I have 'pondered'). And decided that I need to set strong boundaries which include resting and accepting limitations, like maybe not doing everything all the time. But that would be a lie.

I took a shower and wheeled up to the Y to rejoin. Yes, in the manual. And was told they had ‘changed policy’ and I needed to come back the next day. And that they did not accommodate ‘power chairs’ (the next day power that be wanted to know who said that, but didn’t say one way or another). BUT, I am NOW a member of the YMCA-YWCA and have my Recreation Integration Card and am getting ready to take flight.

The shower and going up to the Y in the heat turned out not so great as I wasn’t good on the breathing by bedtime and at one point breathed unassisted between 5-7 times over 25-35 minutes. I don’t think Linda was amused, since she was the one with the ambi-bag. The next day, after waiting for the person to get my membership for an hour in a hot, unventilated room, and then on the way home, I passed out and had to be brought inside and hooked up to oxygen by the people I was talking to. Then did the, “Look MA! I don't breathe!” trick again that night too. BUT I did accomplish what I set out to. I am however firmly grounded for now, and will be sitting still for a little while. But just you wait; I am going to fly. Not anymore because I think people won’t like me if I don’t or demand it but because I can. Because I want to, and because I want to show anyone, and everyone that what is possible is only limited to what can be dreamt, desired and the willingness to try even if you fail.

This is where you come in. Oh, like you thought you were getting out of this? Cheryl, three weeks ago, after the Moss Street Artist Display complained that she was so sore from the going up and down the hill and the distance. I said, “well, better keep doing a couple kilometers or miles a week so you are ready for the five kilometer events we enter into. Having a pit crew is nice, but having a fellow PARTICIPANT would be better!” She must have thought I was serious as she HAS been doing training. Which is good as the first 5K is in 3 weeks, and the next two weeks after that. Hee hee.

Most of us in our lives, are in some ways like me, limited, but not by heat and walls but by the limits we have put on ourselves. We live a good life, we live a crappy life, we all get by, but..... And that is it, what is it that makes you secretly look out when no one is looking, and what is it you dream, that you want to do?
September is coming they say and if you want to take a class, take it! So what if you are older than other students. SO WHAT?! Or if you are like me and indoors, then is there not somewhere you want to go, whether 1 block away or 10 miles? Is there no way, with planning, with time, that you can make a dream, a goal come true? Something that will only matter to you (and me). A picnic, looking at the stars, starting a new language, starting an instrument, starting a new project, restarting an old project, reading a book you have been putting off, getting outside to a place that is special to you, or just simply going someplace and remembering, honoring. Whatever it is, it is you flying. Like I said, I would rather have fellow PARTICIPANTS.

To fly requires two parts: to dream and to try. Dreaming is something some have let grow rusty, or hidden behind shields. Because to dream is to expose yourself to hurt, to have dreams, to lose them, there is pain there but there is also joy. And to dream you must believe that you can become more than you are, that you ARE a person worth taking risks. That you matter.

We all matter, but only some will choose to dream. And fewer still will risk trying to fly. For years, I have tried in all ways, in tactile ways, in words, in everything that you are unique, and hold unique dreams and desires. And that nothing is impossible, or few things. Many are scary, some are dangerous but the greatest limit is ourselves. It is time to dream what can be.
I am not asking that achieve it tomorrow, I am asking that you start TODAY! Not that you go out and run a marathon but if you want to run a marathon, or wheel one, then you dream it, and you write up a realistic plan on how that can happen. The hardest twenty meters to run during training are the twenty meters out your own door. To do it is to try and sometimes it works and sometimes it doesn’t. Sometimes I try two, three, six, seven times before I simply can get out ANYWHERE with Linda besides here. If you don’t try, if I don’t try, I already know our chance of success and then a dream is just that, something we build a shell over. And something we get resentful about when we see others struggling to achieve the same. Because there will be difficulties. But then, even I am not so sure on how to fly anymore, so there might be some bumpy moments. But as Amelia Earhart said (via Life and Times of Emma), “Never interrupt someone doing what you said couldn’t be done.”

I will leave these walls and I will go to the Y with a volunteer, or I will be so ill from trying that I will have to stop, to gather my strength, and to try again. But I will go, I will play badminton and I will box. Yes, that’s right, I am going to box. Because if the pain of muscles ripping is so bad that I can only handle one night of boxing, that is one night more than I have had this year. That is one night that I lived my dream. And nothing will ever take that away.

So I am asking to try flying with me. And yes, there might be a big splat. But there might not….then what? Another dream to try? Lots of reason to not. Truth is that you might have fragile wings, delicate. But if you have wings and never even try to fly...? Yes, scary to try: People can see us, we can see us, we are too old, too young, not experienced enough, not ready, not this month, not this year. There is ALWAYS a reason to not do something. I am asking to please find a reason to get ready to try. I am not the kind that goes, “Don’t ‘try’ but DO!’ as my rock climbing instructor used to yell. Not a well loved person. I, on the other hand, know that the ‘doing’ comes from honest ‘trying’ and that is all we can do, is try, with all our might. And regardless the outcome, I would be interested, if you are willing, to share how things went, or are going.

So, I am going to sleep and hope that I breath independently for the start and when I get up I will start matching postcards. I am resting up, but I didn’t say I was sitting still doing nothing! As for what else, and with me, there is ALWAYS something else, well, you are going to just have to wait and watch this space.

$23,000 of foot crushing, corsets, my panties and the BBC

Today was a very big day for me as I talked myself pretty much into a stupor with Janet who is now going to be the Olympic swim coach and Ted from Motion as they brought my $23, 000 chair. My GOD! I felt bad, that a family in a trailer park is living without a new double wide trailer because I have this chair (seriously, aren’t medical costs obscene!).

I have been having a lot of memories of Japan, and my trip there because I am helping another wheelchair user right now do some booking of hotels from my blog. So if you haven’t read the Japan section I recommend hitting April 2008 and scrolling to the bottom or hitting here. The cherry blossoms are coming out in Japan AND coming out (according to Stephanie) in Victoria. The Cherry Blossoms near me, by the parliament, are actually a gift from the Emperor of Japan in the 1930’s when Victoria hosted his daughter. This is considered a great honor as Japan marks cherry trees as those from the cutting of the Emperors’ trees and those which are NOT (of course the Emperors’ trees are somehow better). Also much like the UK, they keep a record of ‘significant trees’ – but in Japan ‘significant cherry trees’, so we went during Sakura (the cherry blossom festival as the blossoms open all over Japan at different times) and saw a few of the trees. And stared for twenty seconds before saying, “Do you see anything particularly significant?”

And Linda would say, “Looks pretty much like every other cherry tree to me!” But hey, we tried!

Speaking of trying, I have decided not only to begin my work in editing a book about becoming rather suddenly disabled and how you get to join the cool club (don’t worry, everyone gets there either temporarily or eventually, just keep doing those ski jumps!). I also have written to the BBC to ask to start writing short blogs for them. All of the bloggers were booted off laste last year, and the new site is fine but lacks a bit of the common touch and experience. When most of the writers have jobs for the BBC or are independent comedians while most people with disabilities are unemployed (over 75% in recent surveys - and I consider the complexity of being ME a full time job). So I am going to be really cheeky (wow, what a TOTAL surprise for everyone!), and ask if you can ask Ouch to let me blog for them....for free. The ‘Contact Us’ section you get to by hitting HERE and going down on the left and hitting Contact Us which provides an email address OR you can just put in your comments right there. So I have provided a possible response you might want to put in, just cut and paste:

I like Elizabeth, she show me her panties and she not kill anyone yet. Please let her show her panties and shots of her begging for money on the BBC. Also she is FAR away from your office and cannot hurt you…that important!

If you DO put that in the comment...I will be very, very, VEXED, and come and do things to you; you don’t want to see me vexed (other people do, but you don’t),I may do evil things…..like roll over you many times with my power chair (it actually has a setting you push on the computer for rolling over things, I was rather disturbed by that).

One last thing before back to the powerchair, is for those who are disabled or know someone disabled, I have found a manga series called REAL about wheelchair basketball. The wildly popular writer of basketball series (think millions of copies sold), has a new series about three young men who all are in wheelchairs through different ways (cancer, car accident…), but all end up using wheelchair basketball. I haven’t read it yet, so I can’t tell you how good or bad it is, but it is on my wishlist and I thought if you have a friend or young person in a wheelchair who thinks there is nothing out there for THEM, try this. We all like to be represented in the media of popular culture; we all belong here.

You can thank today’s pictures to Victor who gave me a gift that keeps on giving…kick ass pretty pictures. It is a great gift. Thank you Victor! This is how I thank him, I think he will understand. Besides, the more I try to explain that picture and me thanking Victor, the more sordid it sounds.

Back to the Power Chair (still deciding on a name for it between Lurch or Igor), it is small enough to go from my work desk to my bed and back as well as outside….in theory. It arrived today as did Janet, who talks three times faster than other humans and is about the only person who can out-talk me. She looked like she had been in a fight but it turns out she fell down while walking her dog and her face hit a rock (ouch!). I told her that I could help her in lessons on falling down. She said that she was sure I could, and would see if she had the time. Then she started instructing me on how to use the chair going downhill, like to tilt it backwards on a steep hill to stay inside (it has no seat belt as apparently in an argument I don’t remember I refused a seat belt?). I asked her, “will the tilting make it go FASTER!” She said no but I would learn how to CONTROL the chair or I might fly out of it. I told her, I was used to flying out of wheelchairs and what I need is how to make it go really FAST down a hill! Though having a full on electric wheelchair fall atop me I think might hurt. She said she would not tell me until I learn to control the chair first. I said, “It is straight down hill, what do I need to control?”

Anyway, the other thing which has me irked is there is this big button in the middle of the control panel and it does......nothing. I told the tech, Ted earlier that I wanted rockets out the back, or sparklers or a little death ray. I mean I pay over $23,000 and they can’t provide SOMETHING to go with this big button? Just a little death ray out the front? Or sparklers to go with my Kimono? Sigh. The controls are electronic and there are 5 settings, from indoors to high speed AND going over things. The problem is that as I can’t really feel my hands, as I turned to talk to Janet, twice I accidentally hit the switch moving it from indoors, to outdoors, to high speed. I had no idea, but Janet said, “Look you did it again! You are going to zoom into a wall if you don’t watch it.”

I complained that once I stop (there are delayed controls for my gross motor function, so if I take a second or so to find forward, it waits and then starts going), the chair sort of still goes. She said, there is a law of physics and something in motion will stay in motion, and we CAN make it stop dead, but YOU, without your seatbelt, would go flying. There must have been my, “that sounds kind of interesting” look on my face as she said, “No, we won’t do that, try it out for a week!”
I have tried driving it but so far I have not made it to the bedroom without a) making interesting marks on the wall or b) crushing my feet (in one case literally to about an inch if I had not pulled my leg clear). Oops! So I hope I will get better at driving!

Janet is a breath of abusively fresh air as she tells me that this will help me through some of my stages of my ‘potentially terminal disease.’ I was, “potentially?” And she was like, “I thought you were into living!” And then I said, “Well true, I could be the FIRST not to die.” And then we traded stories of people who should be dead due to their conditions, like SMA stage I children (who don’t make it past 1 year) who are teens. It is all about the attitude (I hope!), and maybe the clothes?
Plus she had good advice about how families will do things that seem very, very cruel but are just part of denial. So she made me feel normal with her stories, including her own stories. And said a very good line which is that “your mother loves you but may not like you” about how we can ‘fail’ to live up to expectations. And particularly how they just don’t want to think about their child dying – that the parent aspect of thinking and dealing with a child dying before them makes them have a system failure. Which I could understand: also now I am going to the pool she goes to because that is where all the paralympic swimmers swim and they are used to seizures and all sorts of stuff and don’t call the ambulance. In fact she walked in one day and they said, ‘this disabled swimmer is having a seizure, we have them in this room, do you know them’ which she says drives her nuts like she will OF COURSE know every disabled person in the world, or this city. So she goes in the room and it is her friend, xxxxx, so she does know them.

So, now I have this huge THING sitting in my living room which can demolish my walls but I haven’t quite figured out, besides crushing my feet how to make it work to give me a better life (except now I have head support and thank GOD, I was thinking all this week – please when will the head support come – seriously). I will take pictures tomorrow of the powerchair and me with several of my different corsets, maybe I will take it out with me to go dancing – oh, I can see a lot of people having injuries with me on the dance floor – maybe I will take the manual just this time.

I hope you have a good weekend and please, remember like Big Brother to vote me INTO the BBC Ouch house because apparently I think I don’t have enough to do!