Autumn and Fall, Wheelchair Badminton, Squirrel Siblings and loot!

Fall has arrived, and the trees are sending the leaves down in bushels. Which make some kids happy. I am trying to remember that delight of seeing big leaves instead of automatically thinking “Oh no, this means every leaf blower in town will be on my block forever!”

Sound-wise today was extremely noisy. I did not know why as I had a medical appointment. When Cheryl came she said the Coho – the 50 year old tilt back and forth ferry had carried over the Olympic Torch. Not only that, because of the ‘political target’ it could make, the slow moving, waddling Coho Ferry was escorted by the US Coast Guard until Canadian Waters and then by the Canadian Coast Guard. I am not sure what the plan was because the Coho was built back in the days when LARGE amounts of steel was put into ships, enough to make those giant Caddies that go through brick walls seem wimpy. So was a speedboat supposed to hit it with explosives? Because of the Olympics? And would the Coho notice? Or was one of the cars aboard supposed to go off, and then the Coast Guard would what? Shoot all the potential suspects swimming toward the Coast Guard vessel? I am not clear on the logic of most things security related, like why U.S. citizens like Cheryl can come to visit me with a driver’s license but cannot as a CITIZEN of the US return to her country/gated community with one, but MUST have a passport.

Anyway, the torch arrived, and according to Cheryl, the ‘Torch Run’ of the Olympics (which is supposed to be about ‘amateur sports’ and not ‘whoring ourselves to media and corporations’ is the ‘RBC and Coca-Cola Torch Run” – because moving the Olympic Flame certainly can’t be done without sponsorship! So Coke and Royal Bank had been using this as several million in advertising having contests on who would run with the torch, and so the torch was jogged 300 yards, then lights the NEXT person, in order to get all the people in who Coke and RBC sold the spots to. AND then afterward, you can buy the torch you ran with. Surreal. I was about to make a joke about how probably Pepsi is sponsoring the Torch Run in Real World or one of the Virtual Worlds. But then I thought I should check to make sure that isn’t actually happening; since many big brands are now opening shops in virtual worlds (Yes, I realize how insane that last sentence sounded – are you being served in your Nike Virtual World shopping experience by penguins? Who knows? Does someone purple carry the torch with wings?).

Back to reality, after my last blog about heaven help those who try to stop me going to badminton, I got 30 minutes sleep, and then in the rain I rolled to badminton (I am not a political target either!). I ended up in my first game facing the badminton coordinator and one of the other very good players. But I was not daunted! In fact, here you see an early point where I am using one hand to push myself up onto my clothing guard while I reach for the birdie. This caused the wheelchair to tip over, but I HIT the birdie, pushed the floor with my fist and the chair bounced back as I called, “In play, still in play” and we went on to win the point. Most impressive for someone who has a 17% chance when trying to scratch their nose of hitting it.

When serving, the important thing is to serve LOW over the net so they cannot slam it back at you – this was a VERY good serve I managed, and Linda got it. I did confuse them a bit with my serves. And they came back at me and my partner. It was a match to 21 points. We were ahead, then behind then ahead. Here you can see me wheeling past after guarding the front and probably blocking a tipped in birdie, I seem pleased, or in concentration.

While in this shot I am about to send the birdie into the far back corner. The problem is that I can only be so many places, as I have a chair that does not move sideways, and the opponents learn to NOT hit to those places – very vexing. But I still got some hits in, here I moved back to cover my partner while he was serving and hit the responding hit (you can see the birdie at the VERY top of the screen, that bit of yellow) which I hit backhand to boot!
Well I played tough, or honestly by the end I was mentally exhausted and a little confused but I tried hard and we ended up losing 23-22 or 24-22, I am not quite sure, all I know is we were tied 21-21 and so could not finish but kept going. I like close games and this one was close.

After another game I wheeled home and then got too little sleep due to two cement trucks, a crane, two chainsaws and a few other handy noisemakers the next morning starting at 6:56 a.m. Ug.

Remember those two squirrel siblings I told you about. Well here they are. You see one is bounding toward Cheryl, while the other is finding and digging up where the sibling just buried the last peanut. Then, as the squirrel gets the peanut, you can see the other in the background, having found the last peanut is now eating it. Then they move aside so the happy sibling (the poor clueless one who you end up tricking to do your chores) goes around to find a new burying spot while they finish the peanut – then as the sibling bounds off to get another one, they dig that up too. Sad but oh so familiar.

I also got some postcard loot for the postcard project in Hawaii and on orders which finally came in – here is one of the Postcard Books that I have been looking forward to getting and sending out. I used to spend my hours as a youth in the old Pasadena Public Library which looked a lot like this one but a lot bigger (it had lions too outside). There was hard wood everywhere and the old card catalogues, and the information/answer desk where you used to be able to go and ask a librarian a question like, “How many moons does Saturn have?” and they would find the answer for you.

I also got this set of Escher cards which I can send out with little gifts or just as cards while the hand lasts. I like Escher because so much of it seems a metaphor for disability; the way medios think and work and so much in life. What doesn't go round and round in disability land?

Also here are some of the stickers we picked up at a store, I think just outside the Waipio Valley called Honoko. We have already sent out several of them (half?) on the postcards we did last week – about 30+ in number. I liked finding these touches of Hawaii and bringing them to the postcard, because when they are gone, they are gone. And that is the point of a postcard, isn’t it?

For those who are going trick or treating tomorrow, good luck. If you are in doubt whether to go trick or treating this is a little measure I use: If you are carrying a bottle of beer or liquor and take hits from it between houses, or have to put out your cig before asking for candy – you are TOO OLD! Sorry.

Badminton with Beth: the secret facial expressions of power!

Sometimes badminton can get a bit ugly. No, not the attitudes of players, I am talking about my facial expressions.It turns out I have spent SO much time alone that I have forgotten the first rule of socializing, “smile, smile, smile!” You look so pretty, oh so pretty with a smile! No matter what you are doing: Go Social Conditioning!

One of my workers saw a picture of me from a few years ago and said, “Wow, you must of gotten that taken when you were REALLY young!” Um, er, I said, “Actually, auto-immune diseases are not really known for being great on the skin.” Sigh, I better start dragging out the facial night cream, and doing make up on days she comes, since I can’t take that kind of slapping twice. Ouch!

It had been two weeks as I had to take the Wednesday off from after the 10K. I just did two games and they were better games, lighter, close, again, loses, but close matches 12-15 in one with a comeback. I just got brain tired. One guy was a tough player and I served several aces on him. He was not amused so the next game he served all over, I had to be ready to back up, to swivel sideways, to do anything, and after he got two aces, I shut that second game down and we made another comeback, but lost. It was intense but fun-intense. I tried my hardest, and that is all everyone asked of themselves. That type of fun where you do something together, everyone trying hard, and see what happens.
Please remember, I am a trained professional, do not try these facial expressions at home. Like you would!

This is about as good as it gets, at the beginning of the match. I am developing a pot which has something to do with ‘cut muscles’ or ‘nerve dead supporting muscles’, it is irritating because I actually have a firm hard stomach underneath but there is the pot. I really, really want to go on a diet but Linda says since I am still malnourished in several vitamins and other stuff I can’t (I have a pot, yet I am malnourished?). Anyway, as the match goes on, I pull out all the stops, which includes the staring at one side while serving to the other (misdirection) and the confusing my opponents with the ‘What the hell is wrong with her?!’ psych expression! I am just telling you that, I would love to say I intended that face instead of just finding it on the pictures later.

I am noticing now that I need not just more physical stamina but mental stamina too. As you can see here in an early shot, my opponent is getting ready to slam the yellow birdie, and I am positioning myself to receive it and return it. That is how badminton is supposed to be played. However, when I get tired, I tend to have to remind myself that I am still in the game. So here we have the ‘wow, look at the birdie go!” expression when I really should be wheeling myself into position for when they hit it back, but no, I am too dazed and fascinated by the pretty birdie in the air!

Of course there were exceptions, like this face where I am going, "Is it in, is it out, looks out but, OMG! It is IN? It is IN?" Remember, these are advanced facial looks and I do not suggest an amateur try them. Here as you can see, I am using the ‘mind focus’ technique to ‘will’ my birdie where I want it to go. Either than or I am low on oxygen and a little stoned, not quite sure. I have noticed that while with repetition I can hit the birdies that come in range, I can’t deal with speed beyond a certain level. It is just too fast for my nerves to get to my spine or brain and respond. So I need to stop watching the birdie and watch the player, have my racket up and be where the birdie might be is my best bet to work back up to an adequate player.

For today, lots of wheeling and stretching and I sweated a little bit (odd thing, I shaved my pits two weeks ago, and only a very little has grown back, I think the sweat in my pits is limited to those glands, and I need to get more ‘glow’ going, but it cuts down on the shaving!), a slight sheen on my torso. So far nothing on my head or neck, both of which are causing overheating issue. But still, good plan, and when I return, on to boxing!

Bigots at badminton and difficulties going to paradise

At badminton, things have changed, things have stayed the same. I wheeled in and put my racked in the holder (groups of four for doubles playing, supposed to be random). The male about to put his racket in stopped, counted the number, and then started going out and asking people if they were going to play. “I’ll get that for you.” He said grabbing their racket and putting it in behind mine until the group of four was filled, then he put his racket in. This is against policy.

It is 80% or more male now at badminton and most of them don’t seem to know that they are at ‘RECREATIONAL badminton’, which means any person, any skill level. Males going out on a court with females I can overhear, “Let’s finish this one up quickly.”, or “What a waste, I wanted a GOOD game.” In the five matches I have had, my experience includes: two males opposite refusing to hit to me or near me, but hitting only to the other player, if I go back, they hit front, if I take left, they hit right, for the entire volley, for the entire match; had my own male ‘partner’ hit the birdie out repeatedly to lose so that he can go onto a better game, had a male partner who simply watched another game while standing on the court and didn’t respond to serves, been told that my wheelchair up against the wall waiting with other players was sticking out too far (for those in a ‘serious’ game), was told by a player that my wheelchair did not have the right straps on it (because I kept coming out of the chair to hit the birdie when they placed it where they thought it was out of my reach), had both males go on the other side to partner together (so they didn’t have to partner with me) leaving me and a female to partner and have only had 3 male players (out of 13) on either side, including my own partners ever give me their name, even when I introduce myself.

But I don’t go there for love. I go there because I if I don’t expand my contracting vascular circulation, parts of my body will die, and I will die. When an elevator door shuts on your hand, and you don’t bruise because there is little to no blood, that’s bad. When you can’t give blood for tests because your veins have retreated so far, that’s bad. Yes, I am very white, I am very goth. I am also losing scalp and hair (but as one care worker said, if that DIDN’T bother me, there would be something wrong – so it bothers me). I know my reflexes are slower, I know that I don’t remember all the strategy to badminton I learned when I went regularly, and dying females in wheelchairs are not athletically equal to guys who sprint and leap and do slams around the court. But it is ‘recreational badminton.’ Or like so many things, it can be a mirror to the personality (people look at the surface and think that is all there is: assumptions).
My favorite doubles partner, who remembered me from before was leaving after last night because they were one of the government employees in Linda’s section who were laid off. Suck. The Wednesday Coordinator says there is a place for me to come on Wednesday and Linda, regardless. It is not his fault there are a lot of people who want to play the stupid, “How big is your penis?” game, in which females are by default secondary humans (no penis!) and wheelies are sub-humans.

My first game on Wednesday was my best. The guy next to me said suddenly during warm up, “This is my first game, no, I mean my first day playing badminton.” Okay. I had to wonder at the teaming but with an ace serve from me, we got a point and he got some rallies in, and it was almost fun. The last game I ended up facing not only my previous partner who hit birdies out to finish up a game but a guy who was verbally abusive, condescending to me and was the one at the beginning who made it plain he didn’t want to play with me. I was with another female. I will call the guy who rigged my first set, the one who when I fell out of my chair leaned over to tell me to ‘stop trying’ but didn’t help except to watch me helpless, Dick. Dick didn’t like me being there. Dick just couldn’t shut up during my serves, or his serves, ‘Where do you want it honey?” he would say before trying to hit it out of my reach. He told me he was toning it down so that I didn’t embarrass myself in front of ‘her’ the girlfriend, Linda. When I showed him and his partner I could take it, he called me ‘butch’. What gave Dick the right to determine to comment on my orientation, unless he calls a lot of female police officers who pull him over for speeding, “Honey”, “Why try so hard.”, “Fine, fine, you’ve shown me how butch you are!” It would be interesting if he did. Dick was a Bigot.

But then, I have had a lot of experience with Bigots. I started slamming them and getting points, so they stopped hitting to me at all. They ran my partner ragged and there was nothing I could do as there was no way to cover, as they were doing deliberate placement. It wasn’t recreational, it was bigot badminton. When I hit into the net, Dick would offer a ‘do over’ just for me. When I aced him, he said, hey, he wasn’t ready. He found after two over-my-head hits that I was ready to back up and I could get those. So he started to drop them just out of my range, his partner did the same. I threw myself out of my chair, again, and again (two points and one massive bruise for three dives). Dick never helped, even when I passed out a little on the floor, when I fell over trying to get back into the chair, he just watched and told me to stop trying, stop trying so hard, he even leaned down to tell me my actions were useless. Useless.

I told him that I was there to play, I was there to try. And he started to tell me I didn’t have to when I interrupted him to tell him that I had seen him, we had seen him, segregate against me earlier, so yes, I DID have to try and I would ALWAYS try my hardest against him. Why? Because of his assumptions and because of his actions.

One of the times I came out of the chair I made the hit and got the point, another time I stopped him from making a drop shot. He emphasized that he was ahead in points, so it didn’t matter. So I asked him if this was all he had to offer, could he play better? Since I would always be playing MY hardest, at least against HIM.. Linda, the kind mediator called him an arrogant, obnoxious A-hole. Yeah, he got me angry and maybe I lost a point or two on that. Next time I won’t. Though, if Dick or his friends need to beat up on a dying girl in a wheelchair to make themselves feel better, or to try to make her go away, they are very small people.

One time I used such force I hit and rebounded and now have a fist sized bruise on my elbow and skin missing the size of a quarter. That is victory. Two weeks ago, the blood wouldn’t have come up high enough to bruise. I’m playing recreational badminton and I’m extending LIFE itself. What are these people, so intent on not ‘bringing down their game’ by playing with a female doing? What do they get out of it? Certainly not new friends.

Hawaii. Hawaii! Okay, Hawaii was this dream where I could go and it would be fun and casual and I could see stuff. Only I can barely go out an hour every few days. So the dream of being with Linda on the beach has some problems. And like the rest of the world, one of the problem is green. . Med-alert is going to cut me off as I don’t have the funds to pay for another year RIGHT now. We barely made rent, barely, barely.

And I am trying to figure out what to do. Because I am the problem. Traveling with a person of severe disability is more expensive, it costs more for each bag (like $50 per bag per flight), it requires being there earlier, having forms signed (doctors charge for those). Having AirMed to fly me home if I get so ill, I need that ($$$). Plus, I am not making the $800 I hoped to bring to the table. So far I’ve made about $185 in cash by selling books and $150 in doing research savings. Still trying to get the bike listed ($175-200 with all equipment). Ebay is harder now for me, more energy expended but less listed. Linda explained we go in just under three weeks, Oct 4th. I thought there was more time, I thought I had more time. I am almost half way there in earning and I am out of time.

With those limited options, I came up with ideas. Linda does not support them. Plan #1 – beg on the street selling pencils with a tin cup (I have the tin cup!) – not optimal but I don’t want to disappoint and make life so hard for Cheryl and Linda), #2, ‘sell’ stuff on the street, with payment by donation (I have stuff lying around, I could do that!). I am already putting my DVD’s on ebay, and selling some of my book collection on Amazon. Linda says no. She says it is too cold, that I WILL get frostbite, that I won’t know when to stop (true) and then get disoriented and not be able to make it home.

I don’t like being helpless. I don’t like other people having a bad vacation because I am there. I don’t like that. I don’t want that. I want to not go, and for Linda and Cheryl to go to Hawaii. Then there will be no more talk about money or problems. And since I don’t need to eat or rather feel hungry, staying here is no problem.

I AM weaker than when this trip was planned, than when this trip was booked and we have been ignoring that (an hour a week of activity doesn't mean I am strong). I am supposed to be rested and yet I have construction across the street limiting my sleep and assaulting me daily. I lie in bed, I am sometimes unable to get out of bed unassisted, or get back into bed, or to the bathroom unassisted. What does that mean for a trip? What will a flight and showing up hours early to the airport going to take out of me?

Plus I am guilty. I spend time in the bathroom, I have finally I think regulated my movements, using hydration and grapes, and time. So I read manga, so I buy manga, Yuri manga (and Yaoi). I used my allowance on this and gifts and cool stationary, and postcards because I did not know that Hawaii was that close, I thought it was two animals away at least. Only my calendar was on the wrong animal. My time is off. Mea Culpa. I gave up buying the art books long ago, and now giving up all but the gifts which I will post after Linda and Cheryl get back from Hawaii. Still too late.

I did have another plan, a plan one comes up with late at night when the talk of the cost of X and Y and Z drive me to the brink. So the plan is....mugging. Okay, admittedly kinda Thelma and Louise done disability style. But it does have a very strong attraction of empowerment when I have little right now. I figure that no one would suspect me, I could get close. On the other hand, how hard is it going to be to identify me?

Overall plan is that I am just trying to get to spring. And I don’t know what to do, so I don't really HAVE a plan. I have a winter coming, I have so many systems compromised and I AM getting weaker. I fight back by being willing to take the pain, to have my resting heart rate be 120-140 beats a minute the night after badminton, to feel the pain for days, in order to LIVE. I want to see the spring. I wanted to go to Hawaii where I could see the wonder from the car, where Linda could see the sea life snorkeling, where Cheryl could see new things, I wanted things to remember during the winter, until the flowers come out again. During the winter, there will be construction going 20 feet away. day after day. When I sleep is determined by that, when I eat, what I drink is determined by optimal health. I am still not absorbing foods and nutrients. It is like being on a diet and training program with a gun to the back of my head. And winter is statistically when people like me die. I don’t WANT to die. I want to clean up the study. I want to get things organized. I want to watch more shows and put them on ebay for sale. I want to do fun posts.

If I live to spring I can go to Sakura-con again. It is the mundane that I miss the most just thinking about. So I take the pain in order to see spring, I go get the doctor’s appointments to get the task 2’s done so I can get care when I return, as I expect I won’t be able to lift my torso by myself for a few days. I need to avoid being completely bed-ridden during winter if I am to see spring. I need to get a lift system put in after Linda gets back from Hawaii. This is the reality.

I screwed up, I thought Hawaii was about the flight, not about the huge costs over there. One person I know cancelled as housing was going to be $3000. We have the housing, we have the inter-island flights, we have the car, we have access to the mountain, to lava, to rare sea turtles and dolphins, to sheltered tide pools, to black and green sand beaches, to 1,000 foot waterfalls coming down cliffs into the valley of the kings. Things like a few hotel nights (Seattle, Honolulu), food, gas/petrol, and some entrance fees finances still working on, I am still working, going or not, I will do my part as I can. Back to trying to breathe, to the respirator. Then rested, maybe putting something on ebay.

Linda spared while I become coma girl

The good news is that Linda indeed has a job. That is about the entire extent of the Good News. The idea of ‘efficiency’ in the government is to tell people on Monday that they could be fired, I mean laid off, I mean completely broke and then not tell them until late Thursday or so that they are not fired (except those they fired).

It seems they honestly believe that saying, “for the good of the budget” would have everyone working hard that spare time instead of: talking to union reps, talking to the excluded member reps, talking to everyone in the break room, talking about it in emails, talking about it to each other and mooching around depressed. We are in the Dictatorship of Gordon Campbell and some find that less that reassuring. Particularly when their job ‘Customer Service’ changes in four weeks from helping people to simply giving out bad news and then being yelled at by senior management and Deputy Ministers of other departments. Yes, this is an ad for people to join government work, why do you ask?

So, after everyone fidgeting and waiting for the “Could you please step into my office” bit for what seemed EVER, Linda was told in a mass email that the killing, er, firing, er, lay offs, was done for now. So she called me and said, “I am NOT motivated.” Odd, didn’t feel like jumping back in and having people yell at her? What kind of leadership is that?

I guess this sucks particularly since she is owed a raise from two years ago, and in the same message that said people are going to be laid off, it also said that there would be no raises for three years (other than our Great Dictator and his cronies). Our rent goes up, my meds go up, it is a not great future when my dying quicker is how to maintain a quality of life.Ironically, VIHA and my care workers only have to wait two years until a raise. But that’s because they took an 8 week course, not a degree and years in management, project management and the rest.

The second thing Linda said upon getting home is “Geez, I really want to read a romance!” And so she researched her fav authors, found a few books she had missed and added some to MY wish list (???), some are a few cents, a dollar I think. And I think when we have time is going to the library (when we have time – since now, with declining health, seizures and not breathing people seem to not want to leave me alone, like care workers, Linda and Cheryl. They hide the concern by saying things like, “I don’t want to leave you alone, what if you die on me.” Or “I’m not leaving you here, have you seen what you look like?”)

We have been too busy mending string and doing the ‘we are all saving like crazy’ thing to have time to read or relax together. I am glad we are going to Hawaii before the rainy season but a month later would have been nicer financially. The multiple doctor visits (after the ‘meet and greet’ I needed to do a walk-in or two), and due to the lack of blood to my arms, I went to Badminton. When you never bruise and you get in a funk and cut yourself and don’t get blood, and then cut OVER the same cut and don’t get blood. That is a high motivator. So I played badminton and the coordinator was very surprised to see me as ‘he had heard things….not good things’ about my health. Which I realized later meant ‘dead’. Nope, not dead yet. It was 24 guys and us and two females and seemed it was like that a lot as the guys acted like a female on the court wasn’t worth even introducing themselves to. They talked only to each other (even if on opposite courts) and played the ‘Oh well, let me do what I need to in order to leave here’ game. Linda’s male pairing kept staring off court to see how OTHER games were going on…..during a point. Plus I had the joy of being yelled at being too close to the court because my wheelchair had to wheel (not on the court at all) past people. Because this was COMPETITIVE...listed as recreational badminton. Why do some people do that, make fun things not so?

But since my nerves were slower, I was hitting too late or not even able to react to fast moving birdies. I will need a strategy for that. But I won one game and lost one, but the two of us female were making a comeback (my female partner looked at me crazy when I said, at 8-14 that it was time for our comeback – 15 is game), we made it up to 11-15 by the time the birdie dropped. Hey like 2 to 1 score with game point is going to slow me down!

So mixed feelings but pain, pain, pain and then punked the next day (Thursday) when I could hardly move an arm to answer the phone to find out that Linda wasn’t motivated.
Friday, to top off the evening, on which I had a stupid fight about whether I was a ‘real person’ or not (I was in the ‘I’m not’ because things seemed in the ‘sucky’ pile and even sick, ill, dying people, particularly females still get moody and depressed). It is odd that I am not always a beam of sunshine, but that’s true. Anyway, what happened for most of the day is unclear as I had several clusters of seizures, then stopped breathing, then, um, I dunno. But Cheryl and Linda said I had more seizures including one where my jaw kept dislocating (wow, so sad I missed that fun, huh, aren’t you?!). Which followed by me going into a coma, or a semi coma as they each tried twice (or was it three times from Linda?) to get me conscious but I did not respond to external stimuli, and when I did manage to respond, I did not attain consciousness.

I did however have a dream just before I woke that I was fencing Bart Barker from Wheel of Fortune and took a marshmallow off the tip of his sword to win the bout. If you wanted to know about the visions us coma gals see of the afterlife, make of that what you will!

After waking fully from the coma, I went back to sleep. Only to be woken by a seizure which made all the muscles in my back feel like there were snakes in my skin. It was FAR less fun than that ride where they take you up eight stories and drop you before slowing down at the last second. Since it went on for many, many minutes and there was absolutely no way to stop it.

Once I tried to get up it was incredibly difficult to get coordinated movement, someone had indeed thrown a wrench into the gears of my brain. I blame one of the Spice Girls. I am convinced that one of them, ala Dorian Grey (Now Doreen Grey?), has a portrait as the more odd things she puts up her nose to get high the more I have mysterious illnesses.

The GOOD news is that I woke from the coma with the power to see into the future. Precognition however did not give me fame or fortune but as I tried to return to my life as a tutor now instead of a teacher, I was view with suspicion and hostility. Which I think rather odd because I was fated to shoot one of the presidents, and that usually is someone who everyone says, “Gosh, he was always the one chuckling about something....all by himself in the corner.” (Has there ever been a female assassin?).

Um, in reality land, I had a fever, I was not that coordinated and in a bit of pain, but it seems that a coma can be um, if not viewed as a sort of disturbing trend for the future then something that mucks up the here and now (that's how I choose to see it!). Because not only were vital plans lost, but now I am behind by many hours including vital postcard project time (and going to the farmers market – missed COMPLETELY).

I am off to do postcards but I wanted to let you know that I, coma-girl is still alive, or rather 60% of me is still alive, just don’t look below the lap blanket! Those cuts on my arms as well as other injuries are healing instead of just sitting there, indicating blood IS flowing to my extremities, thanks to badminton (Linda nixed the idea of cutting myself once a week as a baseline). And I hope you are having a rocking day. I am because I got some very cool mail, the best kind, mail I got for me, but forgot about! I ordered a stationery set, on sale, with free shipping, of this very cool Victoria Frances Stationary, which I can use to send out notes with any gifts I send (actually writing through the blood is something I am quite used to). I was unaware but she has a major cult following and several books and is a kick-ass artist. Not only does she do very fetching Vampire females but she also draws the hot and heavy look of the vampire male.
Yes, fun mail, the only problem with a set like this is that I don’t know what to do with it. I mean, too many choices and not enough envelopes. Still, it introduced me to this new (although I must have known briefly about her!) artist. She also does some lovely hetero romance…..I mean if the idea of romance is finding some ‘not so hard on the eyes’ male vampire to spend your time with before getting down to business….I mean biting…I guess I do mean ‘the business’ (all you kids reading ask your parents what that means!).

Along with was a gift I bought for Cheryl, a stationary set of Bettie Paige! It is rocking and Cheryl is very happy and here is a taste of one of the four different kind of pages, the envelopes and it even comes with stickers. I am sure Cheryl will put it to good/evil/fun uses.

As for me, I am enjoying the gift of post coma life by doing exactly what I was doing before.....WAY TOO MUCH. So back to that!

Badminton, illness, and change

Change happens. I know this, we all know this. And yet it bothers us all the same. When we are young it is sort of exciting, while as we age, every little spot or ache is a new limitation. These are the small changes. But across a life there will be dramatic changes, ones which change not just the outside, but the way who we are. Whether we want them to happen or not, they do.

A person is hit by a car, a girl walking home is raped, a man is attacked and beaten with a baseball bat, a person falls down a flight a stairs. Change. Maybe everything eventually looks the same, but it isn’t, is it?

Being disabled and being ill, or impaired is like that. One day, a doctor says something and then it echoes inside you, bouncing back and forth and you have to make a choice: chemo, radiation, amputation. And then, if you are lucky, after a period of horrid days which consist of a hell that cannot be described, the night before chemo, the vomiting just seeing them bring in the bag of it in special anti-toxin gloves. But one day it seems as if life goes on, and while you are not the same, you have a new normal, just a check up every three months, then a year. A week of worry, before the test, before the results and then you are given back a life you realize had been temporarily held by another.

The whole diagnosis process for disease: sometimes it is quick and sometimes it isn’t. Meanwhile, it is a mix of excitement, dread and the horrific. When they come back and tell you that they need to inject you with more radioactive material without sedation because your blood doesn’t seem to circulate correctly, that’s pretty horrific. When they tell you that you are going to give 21 vials of blood, then you need to pee in a jug before coming back in two hours to give a few more vials of blood, that is pretty horrific. But then there is the new people you meet and finding out that you aren’t the only one who had Raynauds, or the only one who lives with the love/hate/burn down their house relationship with specialists. And there are new sports to try, new things to do, and for someone like me, lots of challenges. And while I know that some people need to stay in bed for most of the day I don’t get it, don't understand how. It is just pain right? (well no!) I wheel myself out every day, wheeling up myself hill crying. I visited places, I traveled. And then things changed.

I lost a year, maybe 16 months in tests, and somewhere I fell off the grid and now I am sort of in a constant status of bouncing in and out of dissociation or insanity. Because I am dying, and not in a plucky, still have strength and go do races dying way anymore but in a being at home and wanting to vomit. Falling unconscious several times a day, bleeding out of my nose, my anus, checking my eyes for blood, for the starbust of the brain deprived of oxygen. Having to be checked 20 to 30 minutes of my day, every day, because I stop breathing several times a day.

Since last week was a total bust, THIS was going to be the week where I did not work, where I sat still, very still, and where I rested. This week was when I gave my body a chance at living into the future. I was to REST.
I went to badminton tonight after many, many attempts to go to badminton. My first time in I don’t know how many week, and neither does Linda. It wasn’t particularly pretty to start with, the birdie would fly towards me, the birdie would fly past me, my arm would shoot up and swing at empty air a quarter second later. Not quite getting those connections. But I improved. It wasn’t like it was before but it was enough. I could serve and I could hit the slower ones. And I could hold my arm ready for the rest. I won the first game and it seems that for a second or so, I smiled, and this one, while it isn’t real, it looks real.
My final game was with Linda who had come with me, in case my volunteer didn’t show (she didn’t). Linda was moving, she was hanging tough and going for the birdies. She came to me to see if I had an extra hairband. I didn’t. Then I suggested she use her “Girl’s gotta fly” blue wrist band – which not only helps my health fund but can be used to hold your hair back in a pinch!

The game was tied until my partner and I tried this thing called “strategy”; I try to get the birdie over the net and cover the mid range and he cover the back and we soon had Linda and her partner running. Not that they didn’t fight back, but in the end we were triumphant.

I took the victory with the good grace and the elegant nature for which I am known for in the sporting community. Well, I am known for a PARTICULAR attitude. Hey, I didn’t lose this one so you don’t have to see my pouting face.

Everyone will want to think that yes, I am back. I am sick but I am fighting back. Well maybe I am going out and I am going to badminton but life has changed since I last showed badminton pictures. I am writing this in a race against the oxygen in case I need to go to the hospital. I have been using a EMT mask to keep the high flow oxygen contained longer and yet my hands are turning purple, and I am on two painkillers and have a blood pressure which explains why I fell unconscious twice since coming home. Is it my damaged heart, my wonky vascodilation, my lungs not converting or all three? So much for ‘light exercise’, eh?

On Monday evening, after my nap, I was too fatigued to keep my body upright and was leaned against the wall. Still there 30 minutes later when Linda checked on me. Fatigued to the point that I felt, I knew that this was it, so with my arm supports I wrote some goodbye’s and for the rest of it I just sat there listening to my breathing, stop and start. I did not exactly have peace, but I felt, that everything that I could want and accomplish within the limits of this illness was done. The postcards sent, the packages sent, the blogs posted. It wasn’t everything I wanted but when I couldn’t move my head, and sat on the edge of consciousness, this was it then. I would be dead next time Linda checked.

I wasn’t, but I still don’t know why.

We all come into life different. The way we experience life, the personality, the sensitivity, even how we are physically is different, to the point of being disabled from an early age. But people adjust and get on with it. I had my own interaction with that, a friend with two heart transplants by age 16. But sitting by and living that life is different; I have learned.

Then there are those for whom they bring their own particularly innocence or flair to this society; and while I’m no Qwen, (where DOES he get those clothes...and matching arm warmers?) I like to think I’m fairly memorable. Maybe because I am often threatening high governments bullies, or talking to the police one day to give me a job wheeling down bad guys, the next day trying to talk them into giving me a police record (and to hand me a big rock I want to throw through the Ministry of Health building). Then when they come to check if I am murderer, I volunteer to be a human shield on their next armed assault since I can’t feel anything!

The thing is that I knew who I was and the one thing I knew was that I might slip, I might fall for a time but I don’t fall down; I don’t fall where I can’t get back up. That just isn’t who I am. I am Elizabeth McClung and be it a bully or an army, I stand opposed; whether joined or alone. But see, the little micro-organisms which are eating me as food, which are literally destroying my brain, eating it. Destroying my nerves, they don’t care that I am “Elizabeth McClung” – and so I fall. I fall and I don’t get up. Welcome to disability world, the theme park which has a slide for an entrance and no exit.

They don’t give you a book when you start noticing bits not quite working right. You sit there, and soon you know you are unwell. You are sent for tests and you are terrified. And then they come back negative, and you are relieved, and then they keep coming back negative, and after several hundred negative tests you are terrified again. If people look close they can see that you aren’t well, but hey, that could be anything. And strangely, at least for me, and for others, what other people think makes a difference. I spent a long time lying. Tonight when people asked where I had been, I told them I had a bleeding problem, but “internal mostly, I like to keep my problems to myself” (no one laughs at my jokes). They asked and I told them the name of my disease, they wanted to know what it did and I told them. “My God, my God!” one guy kept saying as I wheeled onto court, my turn having come up, I called backed and apologized if I had bummed him out.

I want to be the person who is able to break the rules but diseases don’t have rules, at least mine doesn’t. It simply does, and I live or I don’t. Change happens, and this time it is going to be ugly, it is already ugly. Am I the person who is drawing the curtains on the 'fight anything' aspect of my life? No. It is my disease. I often can’t breathe, then there are times I stop breathing, times where my heart stops beating, times, where I cough of phlem, and blood, times when I try to take a dump and blood comes out because I stopped digesting certain food, and they are ripping me up.

On Monday, my government manager of care acknowledged my impending death, and in doing so, withdrew care except the offer of “respites” where I would be kept in bed all day, in a hospital setting. I already have that. I have the same equipment and medicine they give me at the hospital here at “Station 2” – my desk, with recline chair, for passing out. I have my blood pressure charts, I have my medicine from vaco-dilators, to blood thinners, to seizure cycles medication, to heart rhythm medication. I have three levels of oxygen, of which I am now on the highest, the mask. And when it gets worst, I go to “Station 1” which is the hospital bed, which has the same things, but the advantage of raising my feet up to put more blood in my heart, and waterproof mattress so I can bleed, shit and pee over it.

The manager was going to be withdrawing certain services. I was to allowed to not be moved from bed if too weak to raise my head. There was some concern that workers might have vacuumed for me! But other than that, nothing was to be done, at least not until a doctor promised the government manager that I would die within six months. A few months ago it was 1 year, they required. That I have a note saying I would die in one year and I could get hospice and palliative care and pain medications and nurses. But I guess there are budget cuts and when I called the palliative care aspect of VIHA (the government) they told me that if I could not call upon them until I KNEW there was only a month left, that was best. The manager knew I was dying but until someone promised I would die SOON, and put it in writing, no help.

So we are going to Seattle to get, beyond a diagnosis and maybe something to prolong my life, also a note to promise that I AM terminal and that I will die. Because the medical evidence shows I should die, that maybe I should be dead already. That I do have a very rapid form of MSA. But it looks like it will cost us $1,000 for a visit, a consult, and the moving of me, very slowly and carefully from place to place down to Seattle and back to have a note saying, “Yes, she will die in six months.” I know several people who died without the note; and they got no help. I can get pain medication if I am terminal, no one will worry about addiction then (woo hoo Morphine here I come!). Maybe I can get that ‘last wish’ program to give me my last wish; the VIHA building in flames with the notice, “If you can get a fire marshal to verify that this fire will be put out in an hour or less; then fire fighting techniques will be applied.” Or should I just ask for the trip to Disneyland like everyone else?

Change has happened. I can’t reply to every email (1/10th would be nice, since I tried to reply to all emails from one morning and did 32 emails – then I couldn’t sit up anymore). I simply can’t blog every day. I would like to blog four times a week. I notice that my numbers are dropping but I can’t do anything about that. I would rather live than have another 400 people a day reading. Last week I rested and watched TV for 5 hours (yeah, that was the whole week, not a day). This week, I have just sat and rested 2 hours. Change in habits, in who I am takes time, and I AM trying. I am checking out this new future, and trying to see how and where I fit in it.
I can’t remember things, I can’t remember more than 48 hours ago, I mix up words, I have a hard time answering questions, I forget the morning if I have a stressful day, I have forgotten most of my last several years. Linda talks about trips and sometimes I remember and sometimes I don’t. I used to have as close to a photographic memory as a person could get. I knew hundreds of thousands of books and thousands of movies and now, maybe I might remember the title of my favorite book, and I might not. My world is very small, it is the computer, it is this desk (I can’t reach most of the room), a bed, and that’s about it. It is a row of DVD’s, a row of manga, a gargole, an anime girl in a wheelchair, and origami of squirrel along with a row of pills. That is the life I have choice over, that is the part of my life I control.

No, I haven’t given up, no, though I know the feeling of being on the edge, I am not ready to die. Never the less, between the disease and the society they have literally put me in a little room. That is where I sit, looking out at the stars and the tree, across from me. And the little things, like the food I have within reach, like the books or entertainment within reach become very important. This is what disease looks like. People send flowers. The flowers wilt. They get thrown away. I get tired, so tired. And it seems at times that people keep waiting for the old “you” to come back. When I want to scream that ‘me’ is right in front of them. They are the ones who can’t accept this final 'me' and so they, the last of those who held on through hope drift away, like family members, to ‘process’. And the pain, the hurting all over and the way it rains against the window makes it easy to get upset over nothing. And I cry at odd times, while most of the time I don’t cry at all. I talk about what your life is, plainly, and other people cry. And other people sit in horror. Someone else leaving. Because when it comes to life, I don’t know if I am entertaining anymore, but I am fighting to stay conscious to tell you what living at the edge of life is like. And quite honestly, if you want to be entertained, please go masturbate. This is life, much like babies, who are very cute but also shit with unbelievable frequency, and vomit, and drool, and vomit again, and get sick…..a lot!

If you have a certain type of disability or disease, you already know what I am talking about, and maybe you can add or adjust me. Or just put "you" intead of "I". I still live, I still have emotions, I still care, I still guard the few things that are within reach, I still look out the window and wonder what people are doing. I wonder what job I would have? Would I be in a restaurant with Linda now, and would we be talking equity instead of seizure padding, or how January and having to pay the annual insurance deductible again is hitting us? And would I always know my name and Linda’s?

Change happens.