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!