Saturday, February 28, 2009

$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… 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!


Kathz said...

Good luck with the power wheelchair! I've always had difficulty getting the hang of things that need steering. I took ages to learn to ride a bike, was dragged round a carpark by a moped I'd just acquired and even bashed all sorts of things with a pushchair (baby buggy in North America, I think). I've even had bad experiences in supermarkets with recalcitrant shopping trolleys. But somehow I learnt to ride a bike, managed (fairly dangerously) to ride a moped and even steered a pushchair without injuring either of my children.

Janet sounds great.

Now I'm heading over to Ouch to post a comment to the Beeb.

Elizabeth Heller said...

hey there, hope you haven't run over your foot yet! it takes a few weeks to learn to steer, then its no problem. seriously though, you really better get a seat belt. shit happens, and i have broken teeth before and last fall i broke my leg falling out, which is NOT FUN. be careful, love you.

Victor Kellar said...

Great news about the chair, I'm sure you'll get the hang of it. And its great to hear that you are writing

You are very welcome, I hope you enjoy the pics, I enjoyed seeing them ..and your "thank you" was awesome

Keep watching the mail

Kate J said...

I think we should all suggest functions for the button on the control panel of your new chair. My own suggestion is a loud horn, a VERY loud one like the ones they have on trains, so everyone will know to get out of your way as you hurtle down the Galloping Goose trail!

I've been getting used to a "new" vehicle too, it's actually a rather ancient ex-golf buggy that we have at the National Botanic Garden for ferrying anyone who needs it from the main entrance to the Glasshouse or to the cafe. It takes a bit of effort to get it up the slope, especially with 6 people on board, but I can build up quite a speed on the way down!
Tomorrow (1st March) being St David's Day we have a "free" day at the garden (ie everyone gets in for free, so it gets VERY busy)and I'll be "buggying" all day. Makes a change from my more sedate usual duties there, in the library.

As for the BBC, I'll certainly put a word in.... pity I don't have any influence! Both my parents worked there, in fact my mum would always tell of when she was secretary to the head of Talks and Drama at the Home Service (now Radio 4) when someone came in with a "good idea, for a radio drama about farmers". "Hmmm, we'll give it a six-week try-out" said the boss. It was The Archers and is still going strong after about 60 years!

Lene Andersen said...

So happy you got the chair and had a good time with Janet! And don't worry - driving the chair will become second nature after a while. Sure, your walls will be a little scraped, but who cares? Just remember to look out for your feet, please!

Cherry trees. Does that mean spring is on its way? We have -20 with the windchill today and I want to cry. Except the tears would become little icicles and that sounds so unpleasant that I didn't. Instead chanting spring is coming... spring is coming...

yanub said...

Wow, Victor, you picked out some great pictures for Beth! Thanks for that, and, Beth, thanks for sharing.

Janet sounds like a superhero. Can that much awesomeness actually exist in one person? Apparently, yes. She is probably right about your mom. Your family seems to practice denial as their form of religion, regardless of where they spend their Sundays or sent you to school.

While I don't know that I actually think you should take on blogging for Ouch! again, I do know that Ouch! has become boring, and they sure could use you. So, I guess I'll support your wacky scheme purely out of my own self-interest. I like your cut-n-paste request comment. Are you sure we shouldn't use it?

I'm going to the comics store today, and was wondering what to look for. So now I know. I'll be looking for Real.

Oh, one more thing. No seatbelt? Yes, that does sound like something you insisted on. Can you tie yourself in some other way? No seat belt....yes, that's EFM all over. I am really excited to learn the whereabouts of the Big Red Button That Doesn't Do Anything. Ah, back when desktop computers were floppy-driven, there wasn't squat all for web pages, and even getting a connection was sometimes an art.... Yeah. I'm glad those days are past. But, still, good to know that Button found a home.

Lisa Moon said...

I'm so happy to hear your chair has finally arrived - although I have to admit I'm a bit dismayed you... er, opted for no seatbelt (then again, it somehow doesn't surprise me, either!).
Yes, from my experience assisting others with their chairs, they can take a while to become accustomed to and DO pack quite a whallop (just as my poor Achilles tendon - and resulting CRPS!) so do be gentle. It would be most unpleasant to accidentally run over Linda or Cheryl's feet by accident, too.

Hoping your new wheels return some feelings of independence and allow you to go for some lovely outings on those sunny days, which should get more frequent anytime, with luck!

Keep hanging in and kickin' butt, girl!

PS Can't wait to see both bikini and new chair photos, if you'd like to share!

Lisa Moon said...

PS I've somewhat regretted not opting for a simple model power chair versus the scooter for the simple fact that power chairs can turn within their own footprint, thus allowing much more access to washrooms, sitting at tables without getting out of your seat, getting into those too-tight spaces on most of the city transit buses, etc. I was going for 'protecting the hypersensitive, violently-neuropathically-pained leg' and now wished I'd just made some sort of bumper for the leg and taken the chair! Whoops!

FridaWrites said...

argh, lost internet connection and my comment.

It will quickly get easier, I think. When I tried the demo Amigo scooter, I couldn't make the tight turns I could in the little scooter and scraped walls. Now I can get by even when there is just 1/4 inch of space on my left.

I think a trip bar function would be a better use for the extra button--it could catch walkies who try to push past. Though sparklers would be really nice.

The button to go over things (curbs?) I didn't know about--I did suspect power wheelchairs can handle more than my scooter will. At 8 times the cost, they should.

The new art is great.

Hope that's everything I said.

JaneB said...

I look forward to hearing about the many new adventuyou and your power chair will find to have!

Stephanie said...

Wow, $23,000 for a wheelchair! You could buy a car for that much. Of course, driving a car between your bedroom and living room might take out a few more walls than a wheelchair.

When the technician was setting me up with my CPAP machine, he warned me that if my cats chewed on the plastic hose, it would cost $50 to replace it. I was aghast but he commented that medical equipment was like military equipment: once you put that prefix on an item, the cost goes up tenfold.

Last post you talked about flying and now you are talking about flying out of wheelchairs. Better strap on your wings before you head down the hill!

Lene Andersen said...

I like Kate J's suggestion of finding functions for the mystery button - horn's good (I've always wanted one of those old horns that go A-YUUUUGA!! - although stun ray/cattle prod might be equally useful.

And holy cow, woman, BBC? Book? When you get going, you really get going!

FridaWrites said...

Oh, I did say that my Lurch has now become Grace.

The trip bar was written out better earlier--if you push a button, a wooden ruler or dowel comes out of the side to keep people from climbing over your lap or squeezing their crotch or butt in your face. Hate that.

I think you need more buttons and a wicked engineer friend. :)

Yeah, I need a loud horn too. Wonder if someone could reengineer that for me. I've leaned on it before by mistake and wondered what the tiny little noise is and I'm sitting next to it. It's like a mosquito, discernible but not really traceable to a particular point in space. Air horns, Lene, we need air horns. Whonk!

A seat belt is not a bad idea for certain terrains. You have the option of not using it when you don't need it.

You're a great writer, so I can definitely see a great book ahead.

Tammy said...

You bet I will send an email to BBC.
The chair seems great..I think. I wonder what your mind came up with when you declined a seatbealt?? I remember reading the post of the flying wheelchair you can do it motorized. I'm suddenly very nervous about this. ;) Just teasing, I'm certain you will do great with it and I think it will increase your mobility by bounds, and help you conserve some of your precious energy. It's a very good thing!

Raccoon said...


If you're in the house, put it on the slowest speed until you get used to it. And, no, driving through walls is not recommended.

My chair has five speeds, tilts, lies down, the feet lift up, and it raises and lowers. And has a headrest, and a rinky-dink little horn that nobody pays any attention to.

Driving slow makes for slow turns, but driving fast can put you where you don't want to be very fast. Like off the edge of the sidewalk/curb. Off the edge of the pier (although, without a seatbelt, you won't sink to the bottom with it). Across someone's yard if you hit an unexpected bump. Or crashing into tables/people/trees.

I can't feel my hands, either. Or my legs, or some of my arms. Practice is good. It only took me a day or so to get used to it.

Seatbelts are important. They won't stop you from doing what you want to do; presumably, you don't REALLY want to go throwing yourself into the middle of the street, do you?

Raccoon said...

A comment on dancing: depending on the type of dancing that you do, and who you do it with, going on the floor with a power chair can be done.

I go to a fancy dress ball a few times during the year. European ballroom style dances. Waltzes & polkas, that sort of thing. I do the opening dance (the Grand March) and the schottish (I know I spelled that wrong). My dance partner for these things and I are trying to figure out what others I can do.

Just be VERY careful of the speed!

Anonymous said...

Hi Beth!
First off don't know what OUCH! is, but with a name like that and a writer like you I want to check it out!! I'm excited about your new power mobile! No seatbelt? I think that there's a law against that for all tough corset wearing women who don't believe in ever resting! Please don't hurt yourself and please don't roll over anything!!!
Hugs and Love, Bronwyn

Elizabeth McClung said...

I am midway trying to NOT stay up until 5 am doing postcards but just have to write many and do a final cheeky sticker and comment to a few more. But about 40 to do, plus some letters. But there are so many great comments I had to come here.

Beg: please someone buy me the copy of the manga Real Vol. 1 - as someone has bought me Vol. 2 which I won't be able to read until I get volume 1 (I tend to follow the rule when it comes to reading.).

Kathz: Thanks, I am pretty good at steering, I just tend to shave things a little to close so when they go wrong, they REALLY go wrong. Like I worked a whole summer with a junior forklift and was the only one with no accidents until my last day when I wiped out an entire wall of stacked drywall at a home depot store (about 60 of them - much for my spotless record!).

Thanks for commenting on the BBC.

Elizabeth: No but I think I don't have any toenails left, or front toe bits. Okay, I hear you about the seat belt, I am serious scared of broken teeth. And broken legs. Thanks!

Victor: I may have to change my schedule a little, I was so 'gung-ho' that I wore through a week of resting and am now back to passing out 20 times in 4 hours - oh well, I am sure I will learn the formula. Thanks for the cool postcard album.

I am really glad you like the 'Thank you' as it is a limited release which was unannounced and I got it by good chance (you know the demand on pictures like that - steamy!).

Oh, I will, fun - more mail!

KateJ: Exactly, it should have SOME function for all that money, it should do something!

That sounds like a blast with the buggy as I can imagine some terrified grannies as you hurtle downhill on it - I hope that you have a great St. David's day - wear the daffodil, hand out the leek (leek for guys right?).

That's pretty cool about the Archers and working for the BBC, but there are so many arms, I didn't know that a huge section (radio 4) is now in Bristol of all places?

Lene: Yeah, I think we have forever given up on ever getting our damage deposit back! So on with the training!

I hear you about the winter and am sending you a two prong attack to keep you sane, so just hang in there a few more days okay?

Yanub: It was a nice gift, postcard book and Jpeg files.

After many years of working with families she gave a lot of examples and I started to understand things like why my parents have driven off and 'forgotten me' and my wheelchair at different places. It helps to know what they are denying or that is just part of the grief process and I have to live with the NOW but they may be in denial.

Well, I was thinking about 500-800 word posts about things we all are interested in - like changing from winter socks to spring ones at Sock Dreams! Or dealing with Brain Fog at your local shop and trying not to look totally like a idiot.

I can't recommend Real but I thought if there was someone you know who is in a wheelchair, they might like to see themselves represented - the author is very gritty, gets into the male mind a lot, so the reviews say.

Cheryl says she was there and yes I did insist on not having a seat belt - I Am not quite sure why I would do that but how can I ask myself?

Lisa: I have always found it regretful that your injury was caused by a wheelchair and maybe influenced your choice as my chair has great suspension and I don't think you leg would be moved or jostled in any way.

Frida: It is sort of built like a tank with extra wheel to assault right up over curbs (and small old ladies and skateboarders and who knows what else?), so once I get going in 'assault' mode I am curious to see how far I can go, can I go mountain climbing in it?

See, I didn't even get a HORN- yes I want a fog horn or a bar - to put thier butt in your face, how rude, same with pushing past. I did have with my wheelchair a car move up to try and make the space so small I couldn't use the cross walk to cross between the cars - I told the driver - "Classy!" and then went between anyway - they were off by three inches.

Jane b: Yes, I have been moping about how I am losing all my independance but really I could get into all sorts of interesting adventures - a girl and her power chair falls over a cliff; a girl and her power chair get arrested for drunk driving; a girl and her power chair assaulting the parliment!

Stephanie: Yes, it is MORE, far more than all the cars I have bought in my entire life. I didn't make up the price, the wheelchair people do -- it doesn't even glow or isn't covered with gold or anything. Why is it worth so much? GST?

I am probably going to get a CPAP no a BPAP for breathing for me while asleep so I too will be one of the people who look like they go diving instead of just dreaming. Yeah, those CPAPs are expensive.

Lene: Yeah, I had a good energy day and decided to take over the world! Haha. Clear up some of that backlog - oh darn, too late to submit my running for mayor.

I VERY much want the cattle prod option - I would use it wisely, honest!

Frida: I am getting a seat belt as I am swayed but that dread thing they warned me about in school: PEER PRESSURE!

I agree, get the ruler thing. On Monday an engineer is giving me a black half tray to use a wireless mouse with and drink with straws on days I can't pick up my drinks.

Tammy: thanks on the BBC thing - I too wonder what was going in my mind but no one from Janet to Cheryl will tell me except saying I was adament. Oh well. I am not used to being so high up, as it is not low down like the manuals. But better for taking pictures of flowers....after I accidently run over them.

Raccoon: Yes, I have the tilt and recline, and the leg lift , but no lower, I have options later for hear and then puff and sip mobility. The tilt is timed for my 'aura' before seizures - 9 seconds to get me fully back.

Do you have that delay thing in the stick, where it waits a second or so before it takes the action due so if your hand wanders the chair doesn't. Apparently they can program it to slow down (or speed up) while turning as well. They said try it a week or two and they will then reprogram all the speeds, which means I guess I will have to go outside with it. Arg! How do you open a door with it? Or two, I can do that in a wheelchair and just use the doors to pull me through, do I just crash through now?

That's pretty cool about the grand balls and the dancing, I would definately like to go to a grand ball, as I have the perfect outfit - or did, once I take it in.

Thanks, I will try to take it slow, and see how that works - and you are right, why DID I not want a seatbelt, just denial?

Bronwyn: I think you might be a little late for 'please don't roll over anything' - I have a feeling that might happen on a daily if not hourly basis. But I think I wanted a webbing instead of a seat belt for seizures and instead they gave me...nothing. Will ask. Thanks!

thea said...

Oh wow, I am so glad to hear you have your new chair. I like the sound of Janet, too! I'm pleased to hear she's not encouraging you to run into *more* walls.

And Thanks as always for the pictures, and for reminding us about Japan. Loved the cherry blossom pictures (although I am sure I couldn't tell the difference between Emperor and non-Emperor!).

Wheelchair-mounted death ray sounds like an interesting accessory. Probably not standard-issue.

Birthe said...

Congratulations, and never mind the scrapes on walls and furniture. I'm sure you will get the hang of it soon.

While you are minding your own feet please keep in mind that other people have feet as well. It hurts to be run over (I'm talking from experience on this one).

Raccoon said...

An option for straws: find a local hardware store that sells tubing. Clear vinyl tubing. It comes in different diameters. Sometimes in plumbing, sometimes in electrical. Generally for pennies on the foot. And they can be washed! Get some of the little fuzzy pipe cleaners to do that with. You can cut them to whatever length you want, too.

When I was first learning, lo those many years ago, the first couple of training chairs not only had a pause factor, there was also a remote control for whoever was with me to use!

As for going through doors, I like the shop doors that don't have latches. Generally, the bottom foot or so is a metal plate, so if you roll up to a gently (Gently I Say!), and push it open slowly, you can get through. Otherwise, a lot of asking people to hold the door. I've actually found that people going in or out will almost automatically hold the door for you, without asking. Of course, that's down here in the San Francisco/Berkeley area.

Hrm. Come to think of it, that also happened in Korea. And Massachusetts. And Los Angeles.

Change the door knobs to door handles.

I've seen more than one news article about wheelchair drivers getting tickets for jaywalking/drunk driving/assault, but I think those are generally more in the Confederate states.

cheryl g said...

Wow, great pictures! My first thought when I saw the picture you posted to thank Victor was, “It’s perfect! Where did she find it?” That thought was closely followed by, “Beth is right you can find a picture for anything in anime.”

So the power chair has arrived. I do remember you not wanting the seat belt but it was more a concern that the belt wasn’t the right type because of your seizures. I thought that Janet was going to look at the possibility of a seat belt from neoprene.

I am pretty sure that you will learn to drive the chair just fine with practice. I also realize the chair represents a pretty big change for you. On the one hand you can now move from place to place without expending as much energy. On the other hand that is a really big visual reminder of the degeneration your disease has caused and will continue to cause. I know that for myself I would find it really hard to come to terms with the idea that I need the very expensive power chair.

I do think you should avoid using the chair to become airborne. I really don’t want you to get hurt. Yes, I know you can’t feel it but humor me. OK?

If it helps, I already have some ideas for tricking out the chair including provide a laser gun sound effect. Sorry, I can't provide a real laser gun...

Anonymous said...

Keep on posting such articles. I love to read articles like this. Just add more pics :)