Wednesday, April 30, 2008

Blogging Against Disabilism: I day

For once I will not be verbose (lie). I have been watching the latest box set of Law and Order Special Victims. I watch every box set that comes out, even when I was in the UK, I ordered it from the states. The police officers care, the female raped is treated with dignity, people are angry for her. The detectives work long hours to find who sexually abused her and arrest him, and they put him to trial and lock him away. And every 45 minutes I see someone whose life will never be the same, but there at least is justice, there is a society (in TV land) who cares, who says, “you matter, what happens to you matters.”

I watch it because, like SO many, I was physically and sexually abused and yet only this show, not the umpteen spin-offs of CSI or the other dozens of court or cop shows, starts by saying, “Sexual Crimes are PARTICULARLY HEINOUS….” I need to hear those words and believe that there is a world, or will be a world where it will stop. That I won’t be hearing stories from nieces (or nephews) in five or 10 years about THEIR rape, sexual abuse, physical abuse.

Disablism: my computer is trying to tell me this isn’t a word. Over a year ago I stopped ‘passing’ as able bodied and lost the privilege I did not know I had. The first one I lost was the ability to define myself. Between the medicos and the population, who I knew I was wasn’t what was getting through. I lost myself as an equal person, as an employable person, as an approachable person. And sure, I have had my share of disablism from open discrimination to entire government institutions which, for example, cannot classify someone like me as a person with a disability in this province UNTIL I am on welfare. But my story isn’t important except that I realized, with a bump, what so many already knew, that there still remains a two tiered system in modern society regarding ablism and disability, with quite a large gap between the tiers.

I learned that because I need assistance, I will never be safe in my own home. Indeed, the local care agency doesn’t consider it “my home” but rather “a workspace” that I am responsible for ensuring is code standard for “their workers.” I learned that when able body people bully or dismiss those with disabilities, when they make jokes about them, or harass and restrict them that nothing is done. And that the same people, the same “good people” who I was a part of will WALK on by. That like the New York case of a woman being raped and killed while 200 people heard screams and did nothing. If you work in a government office, at a racist joke you can expect someone to say, “Hey we don’t do that here.” but not a “Short Bus” joke. You will find that even your greatest enjoyments, like a trip to Japan, have people saying to your partner how ‘Christian’ and ‘kind’ she is to ‘take care of Beth.’ That in many people’s eyes, our marriage, which was not seen as equal to the heteros, is now, no longer a marriage OF equals.

I learned that someone who hasn’t taken a first aid course will try to make demands before I am allowed to pay to do what everyone else can simply because…I am disabled. I have lifted my eyes only a little to this landscape and I realize that this generation does not have the capability of understanding what they are doing is wrong. And so I write against disabilism because I believe that, no, not in this generation, but maybe soon people will be sent to jail for being abusive caregivers; and one day that the value we have as human beings, and the perspective we have will be even listened to.

When suffragettes worked for the vote for women, there was not even the language or ideas of how women’s view in middle and upper management would change the way of doing business. But we have those ideas now; the way business is done and the way almost every activity we do in life is different because an inch at a time the rights and the presence of women advanced. At the Times Colonist 10K run last Sunday, 2/3rds of the joggers were women: in 1970 there wasn’t a woman’s jogging shoe being manufactured. In 35 years, things have changed so that the competitive runner has been replaced by workshops and running groups, by women’s work running clubs at lunch and free presentations on buying the right sports bra. Nike and other jogging shoe companies are more likely to show an ad of women jogging together, one with a three wheel baby-jogging stroller than the ‘lone male’ running through mountains or on early morning pavement of three decades ago. We couldn’t conceive then how things would change and how society would change AND benefit from women being more active.

One day, I believe that there WILL be shows on TV where people with impairments/disabilities not only lead the show, but show an accurate representation of the population: so not just 1 character but 1 in 7. I believe that society will move away from “full time work or no work,” move away from “able body or nothing” type of thinking, move away from a world created for able bodied people and then mildly altered to ALLOW others to take part. I think that sometime in the future, the things we have learned by being dependant, by having a disability will change the way business is done, the way everything from sports, arts, literature and schooling is done. I believe we will finally have a language to express, for each person, the diversity and talent that right now is blocked in at least two generation’s minds behind labels or simply seeing a mobility or other assistive device.

There is no level playing field, in either direction. No, I will never in this lifetime be able to compete in THIS country’s workplace with able body people. And no, it does not appear in my lifetime will THIS country’s work and social fabric be able to learn from me the myriad of things being a person with a disability has taught me, has created in me. I am a better Elizabeth McClung than I was two years ago, but the language and the way for me to express it isn’t here yet; and there isn’t a show I can watch to release the frustration, humiliation and pain I experience in THIS world. Pain not from my disease and disability but from the actions of society as I try to move myself forward.

They say that if you put a chain on a baby elephant, that by the time it is an adult it has learned not to try and free itself even if held only by rope. Many say to me that I will never be able to match the energy, time and system of resources of those who have been abusive, insulting, and/or restrictive. And they are right. Often times it is the agencies set up by able bodied people, staffed by able bodied people who are supposed to be assisting me but instead are judging my “attitude”, as one common example, that I butt heads with. And no, I will never grow up big and strong, my activism, or phone calls will always be made between medical appointments, on the few hours a day I am awake and functional. But I will not be chained. Never chained. Let them learn that.

You know what they used to do to baby elephants who would never give up trying to break out? They’d destroy them. I guess we will see if there is any difference in society between a constructed outcome for an animal and one for someone with a disability?

One day the language will come, the society will come. I believe that.

Generations on, the vote and rights or not, sexual abuse is still rampant. One day that too will change. I believe that.

No, I don’t have answers. I don’t speak for people with disabilities. I am merely grateful for those who have accepted me as friend. As I have more friends connected through this cyber world than in my own town. They are the ones which make me believe that this society will change, can change, and they are the ones who make me believe that person X, is worth the time to educate (perhaps with a particularly sarcastic tone…..).

I do wish we had a phrase, for when our job would be done, like earlier in my life, in the society I was in we would say, “Next year in Jerusalem” which meant: next year all of what we worked for will have come true.

That language will come; I believe it.

Tuesday, April 29, 2008

10K update and two different views toward wheelchair users, me and my 10K competition

There have been some developments on the Times Colonist 10K (the one on Sunday), which I like to think are in some small part due to the blog or my interaction with the people on the day. First, they decided that instead of listing wheelchairs “coming soon” as I mentioned in the blog, they changed their webpage today to eliminate them entirely. Woo Hoo! Oops, I mean, um….we do still exist. It is sad that my final point of “Wheelchairs are not “coming soon” as the website indicates, we are here, we WERE there, and all that shows is that the Times Colonist, the Victoria International Running Society and the city of Victoria STILL are not ready for us.” has been trumped by webpage editing! Also kind of makes a few last minute edits to the OUCH piece, link-wise.

And while the Times Colonist website shows the wheelchair results for 2006 and 2007, the 2008 do not. That includs me (and the fastest person at the 10K: Al Bergman in 25:53 – or as my friend at the parapelegic society said to me today, “We (wheelchairs) have to be a separate class, they (runners) couldn’t stand up to us…no joke intended”).

AND Times Colonist made the correction on my name (I called in), so I am no longer Dr. McCluns. The correction article can be seen here.

Due to the encouragement and support (and the free cookies), that everyone has given me on here regarding the Times Colonist 10K, I am trying (again) to get certified and to rent/borrow a racing chair, so all the readers and people who comment - you DO make a difference, a big one, in my life. Though as many people have mentioned to me as I have called around trying to get in contact with the various groups that I need to join or be signed off/assessed by, many people remembered that Rick Hansen would compete in Road Races like 10K’s in an E&J chair which looks VERY similar to mine (without the oxygen). But it seems that Wheelchair BC, Canada has gotten serious and organized and if they have a chair that goes faster and are willing to lend it, who I am to say no?

Before I go on to two different responses I received via email about my TC 10K, let me recap on my day: I was woken up for a blood test (after fasting). After that I was told to pee, prepared to pee but was told (in high volume) NOT to pee as the water had JUST shut down. Instead small test tube was held up (At which point I said, “You seem to have GROSSLY overestimated my aiming ability”). It seems I was to pee and then freeze the sample at home. Thank goodness the home care which takes out freezer packs to cool my neck is not coming tonight. After that two people came over, watched me eat and commented for 90 minutes (a “swallow specialist” and a dietician?). It seems that my tongue is weak and I need to a) stop losing weight or look forward to the g-tube (???) club and b) I have to chew more than other people and drink more through straws.

Now back to two responses:

The first is from Neil in Sask who is a regular reader and decided to “ride along” even though it was –3 and did the 10K “with me” on his bike,

a sort of unions of spirits over distance. Which I think is pretty cool and thank you for the literally support (in that you went out and did something, and did 10K!). Though I think he might have done 10 MILES, or is a VERY slow biker.

The second was sent for publication on this blog but I thought it would not get the attention from the care which had gone into it simply letting it plop to the bottom of the comments of a post a few days old so here it is:

Dear Elizabeth,
Congratulations on finishing the 10k. It is an impressive accomplishment.
I would however like to rebutle some of the comments you have made regarding the TC10k:
- Entry Form should have a place for wheelchair registration.
(I agree, but it did not, and Linda made a handwritten box)
- The race does not hate mothers or babies. There is a safety concern with strollers and that many people participating. That is why they must start at the back. (Explanation of wheelie humor about hills and baby strollers eludes me)
- Wheelchair start: Were you registered as a competitive wheelchair racer or recreational? It is clearly stated that rec. wheelchair athletes must start in the ActNow Walkers Zone. The only reason for this is so it doesn't get crowded if athletes pass the wheelchairs. Generally wheelchair athletes are faster and that is why they go first, much like why elites are at the front. (also because while runners CAN go sideways, wheelchairs cannot, which is why they are put in front; the third wheelchair competitor finished in just under 50 minutes)
- "Inspiration" whats wrong with people saying that. I wish people told me I was inspirational. I guess they say it because not many wheelchair athletes take part in the event, so those that do...should be in 'inspiration' to others. (anyone.....)
- If find your comments about elites to be rather shocking. Runners take pride in their sport and in order to be 'elite' you must be physically fit. For running this requires a very lean individual. Saying they look anorexic is very discriminating and I am suprised you would make such comments. (This was a very popular joke after the race actually, and having been both in years of training toward ‘elite’ running AND being years of anorexic, it is well known (at least in marathons) of the fine line between ill health and optimal).
- Not moving over when asked to clear the road was also somewhat disrespectful. Yes you are trying to have a fast time but so are those 'elites' at the front. And for the safety of the hundreds of runners it is courtesy to move aside if you are being passed. If you finished in 60mins. You should be starting by the very large sign that says 60mins. You should not be starting with the other wheelchair elites. They are going under or low 30mins and that is why they are in front to begin with. (Please go to Times Colonist results for previous years and review times of wheelchair finishers, or to BC wheelchair athletic classification and review expected finishing times of T1’s and T2’s. I was asked to ‘clear the course’ because the person in question was unaware I was a participant)
- Your comment about the bad news of lots of people. If you knew this was the 2nd largest 10k in Canada and you don't like being around other runners, why did you join the 2nd largest 10k. Why not choose a smaller less populated race? (???)
- Why is this a messed up town when people congratulate you? I do feel some people get the wrong idea, especially the guy commenting on how he didn't want to be beaten..great work gettig him though! (???)
- I am very shocked to hear how the first aid was and that definately needs to be dealt with. That must have been horrific. It seems weird that you couldn't communicate when you had been joking and yelling the whole race? Clarification please? (please reread post:“because I hadn’t really been able to talk for the last km or so…”)
- You also have to give them credit for VOLUNTEERING their time and excuse them for making a mistake while 8,000 people are cross the line and it might be a bit overwhelming. (Jason was being paid. That’s what a private consultant is. And I said, “Jason is not my favorite guy right now, in fact all the "Not my problem" people are not my favs, I did like the volunteers who did a great job (okay not ALL the first aiders), and cleaned up so much trash and helped in so many ways.”)
- Perhaps if you knew you have a condition, you should have had someone who knows your condition there at the finish to support you or helps the first aid attenders better help you. (Crips are allowed to travel alone. I did have a first aid kit with care card, ID and all medical needs in a pack under my chair (as mentioned). I don’t actually “plan” how my conditions manifest or when. Nor am I required to act beyond the actions of any other runner in preperation, the wheelchair is a mobility device, not a "I am a more caring, careful, and obligated to find multiple people to help me" device.)
- For prizes for the event they can't give everyone a medal or prize. I bet they would if they could. I definately agree there should be male and female wheelchair awards, by why not bring it up after the awards, not before while they are trying to frantically get everything sorted. (because they did announce there would be male and female wheelchair awards, right here under Awards and Catagories: “Awards are given three deep to males and females in: Overall, Masters, Wheelchairs…..” Since I would have to wait an hour and a half to receive the award, all I was inquiring was, do I? Then we got into the Wheelchairs have no sexes….)
- Toilets. That is tragic that there was apparently only one wheelchair accessible toilet, however the placement near a cut-away curb might be the fact that it was the only place they were allowed to put it not to just mess everyone up. (Since it is clear you do not know where the wheelchair toilet was, there was an entire half block of toilets then atop a hill, at the top of the stairs, a wee little disabled one. I am curious on your seperation between “Wheelchair accessible” and mess up “everyone” – are there two species? Also, would there be an outcry if there were NO toilets (not no wheelchair accessible, but NO toilets at all on the race course? Maybe? Think they might be a wee pissed….or rather not able to piss).)
- Jason definately did not need to share his last name and you had no right asking. He was there to volunteer and devote his free time to helping people out. He definately did not need you accusing him of being sexest. I am sure he did not make the decision himself or on the spot at that moment. I'm suprised they had an extra medallion to give you. They probably took it away from another category. (No, Jason did not need to tell me his name, and I have the same right as every human being at a public event to ask. He was not a volunteer, or at least that is not what he told me. Hmm, it looked a lot like they did make the decision on the spot because they forgot, or decided in the moment to go with the ‘wheelchairs have no sex thing’, I don’t know if I would call him sexist, I think I was indicating strongly he was discriminatory against people in wheelchairs. And since the women in chairs were to be given awards three deep, I wonder which category “took it away” from the women who finished?)
- top fund-raiser: I am sure if they were the top they received recognition. I hung around and anyone who was the top received an award. That person may have been exagerating. (Well, I can only judge by the jumping up and down in frustration, the smoke coming out of their head, the verification of the person with them and the small and quite polite muttered near swear words which occurred at the phrase, “And that concludes the prize presentation portion of today’s race”)
- TC Booth: This really ticks me. The girl at the booth is just a peon in the TC world. How could you accuse her of not knowing anything. She was probably just a delivery girl getting paid to handout the paper. The TC is merely the title sponsor of the race. They have little to no involvement in the organzing aspects of the race. That would be like asking one of the girls at the Island Farms tent about the race. They are just there to hand food or papers out and congratulate people on completing the 10k. You were barking up the wrong tree. she had the right to smile and nod and not say anything. (Hmmm, so then the Save-On arena, if groups decided to hold “white only events” would be right in saying “we only provide the money, we don’t make/influence decisions?” She was not the delivery girl, or if she was, it was a very well dressed and authoritative delivery girl; but rather since the TC was in charge of promotions, I think it was someone connected to that. The TC advertises it, lists every run, maintains the official webpage, is the email contact, is the online registration, and is one of the four people on the TC 10K organizing committee. I can see they have little to no involvement.)
- Photos: Now this is a big no-no. That is EXTREMELY disrespectful to those people. You have taken photos of VOLUNTEERS who are DONATING THEIR TIME for FREE. How dare you mark them with your words and then post pictures of them most likely without their consent. Spreading ill thoughts about those people who are trying to make a difference. I AM DISGUSTED by this action. (Actually according to the police taking a picture at a public event, particularly for reporting purposes (passing them on to the BBC for the piece there) does not require permission or consent. Please feel free to call the police to verify this. I am heartened that you DO feel outrage and that you DO feel that people can receive disrespect. I am sorry that it isn’t for the way wheelchair racers were talked about and treated.)
- Money: no there wasn't money for wheelchair. Maybe if you were an inspiration and the wheelchair category grew then money would be added. There wasn't money in the kids race or for other age groups. There has be a line somewhere. (Yes, that line used to be with the blacks, wasn’t it, then with the females? But as you say, I am not inspirational enough. If you look at the results for wheelchairs for the 2006-2008 you will notice that less and less wheelchairs participate every year. Sorry I wasn’t there inspiring them. Now the HBC Canada day 10K on almost the identical course, does not have the same number of people, but is able to give prizes in EACH category including cash prizes for both the top three MALE and FEMALE wheelchair competitors.)
- The money is there to hopefully help support those athletes that running is their life. If people complain about not getting money at events for everyone then no one will get any. (Oddly, people who use wheelchair have a life too, they have athletic careers too. Just people like you, and people on committees don’t seem to understand that. Well, until we are in a wheelchair, and then we understand it ALL too well.)
- That is also disrespectful to say it makes sense the race wasn't organized by females. Maybe it was. Now who is being sexest? (That isn’t what I said (go and reread please), and thanks for telling me you are male.)
- Perhaps if things did not go smoothly they will work on it. If it said coming soon and was here then it is obviously new and has kinks in it. Maybe you should try to be on the race committee and organize the wheelchair race. However chances are if you donate your time to the event you wont get to race. Maybe you should think about how much time and effort everyone put into the race and provide constructive criticism rather than just shoot down the whole race, race commitee, volunteers and even the participants. (Again, I see that this is the fault of me, wow, if only I could be in so many places at once AND get the medical tests and work I need done. It is not NEW, as the results from previous years have show, and that aspect, after I commented on it, disappeared today. So now, wheelchairs aren’t coming soon, they didn’t exist (not on the webpage and not in the online records). I would love to be on a race committee, however I am still working on getting more people into wheelchair boxing, wheelchair badminton and other events that a large number of men and women (more women!) with a variety of disabilities can easily access. But once that is taken care of, I will, instead of passing on suggestions to the volunteers to take to the committees, start being on the committees themselves. When, I ask in return, will you be on the committee to pass legislation for a disability act in the city of Victoria?)

I hope that this does not offend you but just helps you take a lighter note on the situation and I hope that you approve this message for others to read. I would also like to see your opinions and reply to this comment. (I have attempted to give you my opinions and I find it interesting that you call this “the lighter note” while I was the one making jokes about people spreading lawn killer on me. I can assure you it will offend and will address that in a moment.)

Congrats again on doing the 10k and definately don't think you should let this discourage you from racing it again. It is an amazing event with an amazing atmosphere.

Yours truly,
Anonymous racer (I am keeping my identity anon as people always take offense when no offense is meant.)

Dear Yours truly,

You have presented the view of Victoria that I wished I could have shown for the past year. Thank you! Your incredible condensation toward people in wheelchairs, your animosity toward me in particular in blaming me (and other wheelies, or just me) for everything from stealing awards for those who worked to earn them, insinuating I was lying about my vocal abilities in the first aid tent to “disrespectful” behavior toward able bodied runners by not going clear off the road for them, to calling someone working a job a “peon”, to your “disgust” toward me, my actions, my “disrespect” to someone who told me to “go away now” by….telling others? This all and more, your blaming of people in wheelchairs and with disabilities that it is THEIR fault when first aid or doctors do something wrong because THEY should have made….er….that their ‘keeper’, their ‘assistive person’ was there to ensure that THEY did not get, what, the same medical care as they and others paid for (It was a $40 race for 6 miles). The use of language which seperates wheelchair users from “everyone. Thank you! Thank you! Thank you!

This IS the voice of Victoria. This is Victoria in a nutshell and this is why we don’t have ramps or access because wheelies are “disrepectful” or “taking from others” or “not thinking about the other people” or whatever reason it is that we lag behind the rest of the western world standing alone as a nation having no disability act. And act which would have made an example of Jason and the TC by saying “You don’t treat people with disabilities THIS WAY, they are equal to you, you treat them with respect. You provide the EQUAL accommodation for their needs as you have for your own.” And I hope in reading this response, you will achieve enlightenment and pass it along to others in Victoria. And if you want to know why “inspire” is not such a nice word for wheelies you could a) have read my blog or b) talk to someone you know and ask them how often they are told they are “inspirational”, “plucky”, “couragous” – because that would produce something.

Getting upset at someone in a wheelchair because they don’t talk or act like you want them to, well, that really isn’t going to solve the problem long term. And there IS a problem in this city. I guess the question is, do you want to help solve it or simply remain part of it?

Two points of view. Personally, I liked Neil's!

Monday, April 28, 2008

My Monstrous Body

I am supposed to be working on the Ouch piece and on a story due on the 30th and what am I doing instead, I have made a significant breakthrough on something not due for a month: a paper on my monstrous body for the 'Feminism for Freaks' anthology which I found listed on Questioning Transphobia.

I cannot say I am in love with the title nor so much with the use of the word “monstrous” since I have recounted in my earlier posts some of my experience with being dehumanized because of my size, before other things came along. Being called “It” or “That” a few times a day is never really big ego boost, such as “Look at that!” when you stand up on the bus. But that wasn’t really what I wanted to talk about in regards to Monstrous. And the emphasis on tall women, on women in non-traditional sports was ones I had already written about in this blog. And by the reactions shown as far as I could tell, feminism couldn’t give a flying toss that the same sports that empowers women gives them eating disorders. Or how the more atypical the body shape and sport, the more overcompensating of “traditional” feminine stereotypes; the boxer who in interviews emphasizes how much they love high heels (some irony that the interviews read very much like those of some transitioned females, whose interviews are held up for mockery/attack as ‘not the views of real women’, is lost apparently).

Anyway, what I realized over the weekend which was only emphasized to me today in my interactions with the BC wheelchair sports association, the paraplegic association, and others is that the most monstrous thing about me right now IS both my disease and its manifestation. It is not the disfigurement which terrifies people but the normality of my appearance. I was told by an SCI rehab worker that “anyone would be threatened” by my condition: the complexity, the speed, the extremes and the variation. I was trying to get classification today for doing other 5K or 8K events in a wheelchair but the BC wheelchair sports association, even the person who does the assessment was leery of what to say or do or to allow me to be classified at all, because I do not fit into 'typical' classifications. On the one hand I can be stood up for a short period of time with assistance (though I may lose voice and left arm function). Which means I am not a “quad”, but I cannot feel several of my fingers, torso, feet, lower legs, use my left leg and during a race lose the ability of independent truck function as well as wheel open handed later in the race (to avoid breaking fingers I can't feel), or just use my thumb and forefinger, which apparently is a higher functioning quad style of wheeling. I don’t have micro motor skills, I require oxygen while racing to stay conscious, I require first aid and cooling upon finishing an event. I lose speech function while exercising, I may temporarily lose consciousness, may not have a great deal of blood or even a pulse in my extremities. I don’t sweat. And while autonomic control is a PART of classification, it is not the primary part, yet to classify me as able bodied, according to the paraplegic association seems absurd (they said, not me). As they pointed out I have to carry WITH me about seven to tens pounds of oxygen, cold packs, ice vest, neck coolers which others do not. Also, since I have to focus on the oxygen to stay conscious, I will have neither the consistency of control of my extremities nor the ability to use the oxygen I am sucking in (since my diaphram doesn't really work) to go faster. Because of the way my muscles cannot rebuild, I cannot exercise or train more than once or twice a week. This and other complexities and the fact that I have limbs which turn green, purple, red, yellow or blue for no apparent understandable reason bothers people.

We are used to humans being explainable. This person cannot breath because of X, this person will have problems with Y, this person can use their hand in this way. So when I come along with a hand that sometimes works okay-ish and at other times is completely paralyzed and that's when I use my elbow to roll my wheelchair then it 'sounds' or 'looks' or 'feels' wrong, and people get scared. This isn’t the way things are supposed to go, people aren’t supposed to pass out mid sentence and then stop breathing and then come back 20-30 minutes later and laugh about it because it is just an every day thing for them. But it is. I got a taste of that when I read Yanub talking about dislocating her shoulder and how common it is but how hard it is to find people who won’t freak out and will put it back in place. And I realized that the THOUGHT of being around someone whose joints did things that my entire life had taught me was NOT how joints worked scared me. That I did not want, as much as I LIKE Yanub, to put my hands on her dislocated anything.

And I suddenly understood the odd laughter from the guy at the parapalegic association when I asked him why the BC wheelchair evaluator asked if I used back tippers. And he explained that was an indication of ability to keep balance. I said that I just got the wheelchair shop to adjust my chair like they did a few weeks ago (and will need to do again) because when I passed out I would fall backward on my head, seemed a better solution than tippers. I mean tippers are...well, not so beautiful looking. And he made a funny, choked laugh and said, “You say that like it is so ordinary (about passing out).” And I said, well, it is, I mean, it was 3:00 pm and I had passed out at 1:30 pm already. And he made another little uncomfortable laugh. I said that the more I exercised, the longer I was going to live and so doing it where people give me cookies seemed to make sense, but I didn’t want to threaten the way things were done or make people think I was some Able Bodied person trying to take over, I am just doing my thing and trying to get what motivation I can. But I can't do it without classification (I am told), and the people who do classification are SCI or deal with SCI and are leery of me. And he said, “just your condition is intimidating” and I guess saying that I am dying and trying to motivate to live longer which is the truth isn’t what the Wheelchair Sport or the SCI people are used to hearing either (or really WANT the people they classify for sport to say: "I want to do a 10K in a racing chair so I die a little later...and hopefully not this race").

So that is my monstrous body, that I can smile for pictures three minutes AFTER I was in a first aid tent for 30 minutes and had stacks of ice on my groin and couldn’t speak and was on oxygen and later I smile and look so, NORMAL. I looked good holding up Mr. Soot. And yet, in a few hours I would be in moaning pain which continues to now, I am weak and pass out, I have problems breathing, swallowing, talking, finding words, using my left arm and yet, I look Normal (or within "What humans should look like if somewhat healthy" classifications). As my somewhat scared night worker says, “This is life and death, and yet you keep making jokes.” Well, I could sob all the time if that helps. If I did limp, or when I do have dropsy on my face, or drool that I am understood, understood as something 'different'; it is the going from dirty jokes about the pope at the film shop to turning green and flopping about on the floor which is so monstrous, so un-human. That the basic aspects of what it is to BE human, to have a beating heart, to breath, to have blood pressure, to have oxygen convert, to process food, to breath in without thinking, to make sounds with your voice – that all these can be taken away at a moment, and some not returned, all in doubt. That is disturbing….well to everyone but me who is so used to my hand turning purple.... (as it is right now, actually I should do something)

(I took a short break to put on the oxygen), that what it means to BE human, to remain HUMAN is called into question.

These are the same questions when AIDS occurred and people died of disease no one had heard of in a human, it terrified people. Why, because nurses had never seen a lesion or someone having problems breathing? No, because no one had see THAT MANY lesions. And when I am covered with bruises, my faces spotted from burst or sunken capillaries, I think it will be the same with me. What terrifies everyone from doctors, home care and even people who are supposed to be helping me get out there (exercise is good - can you believe the BC wheelchair race people asked me "do you have a doctor's note to race" - hahaha!) is that what is in me, what is part of me, this disease doesn’t act like a “normal” disease. I get problems that no one has heard of, and all that can happen is that it gets noted in the book, the one my GP has. It doesn’t make me monstrous, but it is outside what we know as female, outside of what females in their 30’s who are articulate construct as. This isn't simply a body constructed for dependency (sorry, but mine ain't). I am not visually always in need. I am not a condition with a name which is understaood. Yet, I am not different than you, I just am losing what you never think about, that which is autonomic.

There is no great truth or end. I wish people didn’t fear so much, but I understand why they do – because, “It’s not supposed to act like that!” Well, says who?

Sunday, April 27, 2008

The TC 10K 2008, I go to Slapstick First Aid, the fight to have a gender AND use a wheelchair

So we were prepped and rolling out at 7:40 am and arrived at 7:50 to the starts (Race starts at 8:00 am). Officially, the application form had no box for “Wheelchair” section (I had to write mine in) even though there were already three females listed as “Wheelchair” in the online registration. Oh yes and Mr. Soot did made the journey down with me on a thing they gave me to go around my neck (it is blue, look for Soot-san in pictures!).

We were supposed to line up behind the women with babies in strollers, by which I can conclude that a) someone at the TC was a moron or b) they hate babies? Anyway, we asked a few people holding “Ask me” signs and they looked at their paper and it said the times and places for every group from elite runners on down. Nothing about wheelchairs. I had my electronic tag chip on my shoe (placed by a volunteer), my number pinned and we were talking to ANOTHER volunteer when I heard on the speakers, “That’s right folks it is now only 30 seconds is the start of the Wheelchair race, these wheelchairs always prestart…”

What? Well you could have told ME! I started pushing through the crowd to where I knew a gate was and we are about halfway there when I hear over the loudspeakers, “5….4…..3….2…..1 and they are AWAY! What an inspiration these folks are…” (Why do they ALWAYS say that?) And I start screaming, begging people to PLEASE get out of my way and to get the gate opened, I mean they STARTED my race I am still in the crowd. I got the 5 people in front of the gate to move and then begged them to open it and then I booked over the start line, about 2-2.5 minutes after the start of the wheelchairs. Damn.

After that it got kind of odd because there was a full kilometer of uphill to start with, and second because after I turned the corner, this looked a lot like normal wheeling (except now I was all emotional and full of adrenaline) with no one around. So between strokes I put on the Mp3 player, picked my tunes and got out a drink of Gatorade (which I then found I couldn’t open, the stupid plastic wrap! Found a volunteer to do it later.). And then keep going as hard as you can when you are all by yourself and there are a bunch of volunteers and people watching you shouting, “Go!” and you feel kinda stupid because, it is just you. I had just made the first corner, about 2/3rds to the first km, when I heard the blip of the police siren right behind me. I of course looked and then ignored it. It was the police lead motorcycle and there was a cop with a mustache and he pulled up next to me and said, “You need to clear off the course, the runners are coming.” And then pulled ahead.

I was stunned, Fuck dude, I AM the course! Apparently no one had told him that there were wheelchairs in this race or that there might be someone in a wheelchair that a) had started late and b) wasn’t in one of those multi-thousand dollar clamshells they call racing wheelchairs. Anyway, the pack of 14-16 booked past me and I am wheeling as hard as I can because I do NOT like to be passed. And there are people passing me like no ones business. Not like one or two but dozens ever second. Because it turns out that 12,000+ people came to the Times Colonist 10K (here is a pic of the end of the "runners" streaming out, Linda is waiting with the 'walkers' though she jogged 6K). I just said to myself, “It’s the uphill, once you get on the flat things will get better.” Well they didn’t, people just kept passing me, like crazy, even on the downhill! I mean, these WERE the people planning to finish in 30 minutes so I guess I shouldn’t have let it get to me, but it did.

Of course, every time I saw the police drive by in the motorcycle (since we did a 2.5 km down a road and then back in the opposite lane), I would flash him the victory symbol, except it kept getting reversed, so it was fist towards me with two fingers thrust upwards. That’s not rude I hope? And I would say loudly, “Here comes the fuzz, pretend we’re not jaywalking!” Which got a laugh.

I did see the lead wheelie in his clamshell and gave him the true victory sign along with “Go Wheelies!” and then to the guy in second as well. They were cooking. And then came the lead runners (because they had run down and now while I was still going down, they were running back). I have seen some people put in anorexia wards who looked healthier than these guys. Apparently seeing a skull instead of a face and having sticks for legs is “elite” – who knew? Good news is that in months/years, I might get to be “elite” too!

Okay the BAD new about having several THOUSAND people around at all times is that is a lot of peer pressure. First, unlike wheeling on your own you don’t stop and have a drink. I don’t drink on the go because our roads are so bad that I needed both hands to navigate. Plus, I could only listen to one ear of the tunes because of so many erratic runners. I can tell you that after FINALLY cruising past some people on a downhill, I deeply regretted that wheelchairs only had one gear because I was ready to put it in second and leave those people behind.
“Go wheelchair girl!”, “Go Wheelchair”, “Good job.”: that’s what I heard every second. And several times I was PASSED by people over sixty, once by a woman over seventy all who said, “Good going wheelchair girl.” This is one messed up town when it comes to jogging. Twice I heard someone go, "Hey Elizabeth.” Or “Hey Liz!” (must be someone from the boxing class). Before I went up the BIG Hill I pulled off, had a big drink and put on my oxygen and then put my MP3 player to “Paint in Black” (in french). And then it was the fast assult, the three pushes a second until you are just adding more and more speed to the wheels which are almost too fast to push. That was the hill I screamed on. And cried. Damn if I was going slow down, it wasn’t like several hundred people weren’t watching (see if you can spot Mr. Soot!). Only two hills did I cry on and that was the first and the one after it, the second. I cried because I was in PAIN. But that’s just a body reaction like the inability to sit up anymore, it is to be ignored and onward! I cooked up the hill and I was, thinking, Geez, this is a LOT faster than I practiced. But everyone was still running past and every time it went downhill I would catch a few and then came the BIG downhill (1 km). There was a couple who told me, “Only downhill from here.”

I said, “Uh there are those uphills near the fairgrounds!” And they swore.

And then I started shouting, “On the left!”, “On the right!” and “Coming Through!” so often that I was hoarse by the end of the race (I shouted it HUNDREDS of times). I had to assess who wasn’t totally plugged into music and find a space near them and then shout coming through. And we are about 12 abreast and I am going at least twice the speed of everyone else so there was a LOT of shouting. I had a little flag so people BEHIND me could see me.

Linda asked me what the hardest kilometer was and I said it was the 8th to the 9th. I mean, I did the hills, and here we are in James Bay and everyone is going my pace about and I am SO tired. And every little uphill I have to get the Drill Sgt. Voice in my head to keep up the pace. There was one guy who passed me with a “Good going wheelchair girl!” at km six and who I smoked by on the downhill and he passed me on another uphill at km seven and I passed him again between seven and eight and he was PISSED. It was no more, “Good going wheelchair girl” it was “Damned if I am going to finish behind a wheelchair!” So of course, I did everything humanly possible to stay with and pass this guy. Also there were about eight or nine females that I hung with and we kept passing or passing each other and I would make jokes like, “That street going up at that 15% angle up there, that’s a downhill right?” The last kilometer was a slight uphill and the stupid people who THOUGHT they were going to be elites and then walked for a while sudden decide they need to run REALLY fast for the last km where everyone can see them making it all the more hazardous to me. But I saw the big clock and the guy who wasn’t going to finish behind a wheelchair was behind me, and I pushed across, doing the long stroke I call the “swimming stroke” on this long but minimal uphill (because the stroke, if you let your arms extend after doing it is like doing the breast stroke).

Well, that’s actually when it got exciting because I hadn’t really been able to talk for the last km or so, and I wheeled on another 25 meters or so past the finish line and then sort of rested. And I tell you, how many runners stop and lean on a post 25-50 feet after a 10K? A lot! Me? Within about 3 seconds I was hustled into the first aid tent (or as I now refer to it, the tent of surreal slapstick medicine).

The first thing they did was put me next to a GIANT space heater. Even though I was making lots of hooting and I am sure the parts of my face that could move were looking terrified. I indicated that they get something out from under my chair because I was already on a cot (transferred at some point). They got out the pack with the two snap-ice packs and the ID, and medical numbers. I got out the ice pack and ALL they had to do was SNAP it and shake it to make it freezing. But all five of them got in a flummox and no one bothered to read the instructions and after some debate they decided to cut it open and sprinkle the stuff inside on me. The stuff inside is Ammonium Nitrate – the stuff you kill lawns with, which is why it says in bold letters on the front “DO NOT OPEN PACKET”

When I told they guys at St. Johns ambulance later they killed themselves laughing. I had come to do a “where were you?” on them because it seems the EMT’s are out on the course were they think the heart attacks will happen and so the trainees are left with the tent by the finish as a sort of “see lots of people, and lets see how you do.” I kept drifting in and out. St. Johns said that since I don’t sweat, once I stopped my cooling system (going forward quickly), I went into heat exhaustion almost immediately. Plus, I couldn’t actually sit up for the last 3-4 km or so. I TRIED, but was going to fall out of the chair so I kept my breasts on my legs and wheeled from there.

Well, back at the amateur hour they had decided that I was a) deaf (because I couldn’t speak clearly maybe?) and b) diabetic. I have no idea how they arrived at the last one. This one woman kept slapping my face and telling me to breathe and open my eyes. I do, and what to I see, a guy ABOUT to inject me with a syringe of insulin (Now, Neil says this is not so, but I know what a blood suger tester looks like and I know what a pen syringe full of insulin looks like and what he had in his hand going toward my arm was the latter). A hoot of terror and he backed off (St. John’s said that with my Reynaud’s the blood sugar at my extremities would be low anyway, so that would just send them down a dead end). I did manage to write “Autonomic Failure” and “Reynauds” at which point one woman says, “Oh, you’re a secondary school teacher at Reynauds! That’s great!” Huh? I am writing my medical conditions, not having a chat!

Anyway they brought in two first aiders who “knew sign language.” So I tried to fingerspell “Shock” because my body was doing it’s tremble thing. They didn’t know the letter S. Then they wanted to know who to contact. They asked, signing BOY, “Do you have a boyfriend?” So I nodded but signed, “I have a GIRLfriend.” The two of them looked at each other and said, “She’s confused.” Then signed again a few times, BOY, going “You have a BOYfriend?” And I signed back, GIRL. And then made the sign for marriage and pushed up my glove so they could see the ring. Well, that caused another tizzy as they weren’t sure what to do, but they understood my partner was out on the course and wanted to know here name. They got L, they didn’t get I, they were stuck at N. N is two fingers pointing down with your thumb tip separating it from the rest of your fist. It LOOKS like an N. Anyway they guessed Linda and then did the whole, “Should we put the call out for Linda McNult?”, “They might not have the same names.”, “what if we ask for someone called Linda who knows Elizabeth McNult to come to the first aid tent?” At this point I tried to fingerspell my last name. They couldn’t get M. I got another first aider to get me a pen and wrote out McClung (it is the name of a LIBRARY in town!). It is also on my medical card and the ID I carried in the ice box under the chair AND on my number pinned to my top.

Meanwhile first aiders had been placing bags of ice on my eight pressure points, like…my wrists, my ankles, my knees and so I gestured for them to give me the bags (the break ice bag, I had confiscated back and broken and shoved in my bra) and then stacked them all on my vagina, except one for my neck and torso. Reynauds isn’t a high school, okay!

At this point I went into either lactic acid or shock spasm, where all my muscles that I knew of went into total spasm and deadlock. I can’t see anything, all I can hear are these two terrible sign language first aiders go into full panic screaming for scissors as they plan to cut ALL my clothes off me. I just bought this top yesterday, and the exercise bottoms last week! Finally the real trained guy showed up and told them to take a chill pill and held them off until the spasm passed and then wanted to know if I wanted a drink; I did. Water (no), Sugar water (no), your Gatorade (yes!). “Do you need a straw?” he asked and I nodded and didn’t want to let go of his hand because he was the only person in that tent who seemed medically sane (little was to I know that instead of sitting me up and opening the Gatorade and putting in a straw they chopped a hole in the top of the Gatorade lid, put in a straw, then sat it on my lap where it fell over and covered my legs with Gatorade – so between four ice packs on my vagina and Gatorade elsewhere I looked like I “lost control” BIG TIME by the time I left that tent).

Anyway, Linda showed up, I was in the chair and she got me out of there as fast as could be (away from the heater). We went and got cookies and orange juice and stuff like that and took a post 10K pic of me and Soot-san! Then I started questioning people about HOW many wheelchairs started at the start exactly? Most people could only remember 1 or 2, maybe 3. They told me to talk to the blah blah organizers tent. Cheryl had arrived and I sent Linda home to shower and recoup and I was off to find out if I needed to hang for an hour because I had happened to be in the top of my group in Wheelchair class? I mean, free prize, being called on stage, these are not things from my competitive experience (well a little in epee – just not the prize). And if I get it by DEFAULT, well, hey, I showed up, not going to pass on a free prize! We finally found the “Volunteer’s Tent” and the wheelchair toilet, which was atop a flight of stairs in the middle of a full city block with no curb cuts for at least a hundred yards. I pointed out that having ONE wheelchair toilet in such a location might be not really “accessible” and they wrote it down for the “meeting afterwards.” So I mentioned that SOME mention either a) on the website, b) on the race packet, c) on the newspaper full page of the race events the day before or d) on the packets given to the volunteers themselves on where and when wheelchairs should be would be handy.

They pointed us to the “organizer and prize tent” So we went there and I have to say that the idea of a prize for wheelchair racers seemed to flummox them (I found later it didn't exist on the webpage either), or the woman in charge organizing the prizes specifically. They found the sheet of competitors and said, no, no prize because I finished fourth. I looked at the sheet and pointed out that the three ahead of me were all MALES, so that means I was the first female wheelchair finisher, right? This caused some confusion and I was told that no, in wheelchair, only the first three get the prize.....they were pretty sure.....yes, just wheelchairs.

I asked if they gave prizes to the top three finishers of FEMALE running racers? Well, yes, of course. And even if they finished after three MALES had finished? They looked at me as if I was crazy, “Of course, what does that have to do with it?”

“Well, see, according to this sheet you have here, I am the top FEMALE wheelchair competitor.” This is when they said that the though that prizes were for “Olympic wheelchair racers” – which I was waiting for because apparently because I didn’t shell out a couple grand for a 10K, I wasn’t “competiting” in my five grand titanium chair. So I had to wait another hour for the awards to find out what they would decide.

So Cheryl and I went to St. John’s ambulance and told medical stories with them, as they had a ramp. They thought the whole thing about “Wheelchair class doesn’t have sexes” was so funny but SO Victoria, especially when Cheryl in that dry wit drawl of hers said, “See, ya gotta turn them over, like kittens, to find out the sex…” They admitted even buying a ambulance bus with a ramp was an accident (they had never planned on it, it just sort of came with the bus), so bad is disability rights in Victoria/Canada. So time for the awards and it was pelting and I was under the tent with some other people (who had raised like tens of thousands for Stoke/Heart research and were the top fundraisers - they didn't get an award either, though they had been promised one) and I eventually asked, “So am I going up, am I getting an award or what?” and the woman conferred with Jason (in blue) who was the guy in charge and it seemed the decision was "No."
But then I made a little skit where I asked if people with legs who ran (and did a little running person on my arms), would be getting prizes according to the gender? And there was a look and a mutter and then the woman shoves a ribbon with a piece of medal on it. And I take it and put it on my lap because this really hasn’t cleared up the issue with me about why wheelchairs don’t have a gender split which they are saying is like “the age classifications.” While I am puzzling how the top 40+ age males is equal to “all wheelchairs” when Jason says quite clearly, “Look, you got your medal okay, so just go away now.” And I was just speechless because, well, I haven’t been spoken to like that since, I dunno 7th grade?

So I went next door to the Times Colonist Booth where the Times Colonist representatives were and they said that they had no influence over policy particularly the “There is no gender in wheelchairs,” and that the TC just fronts the MONEY. I said, "so the Times Colonist 10K run, and I write a $40 check to the Times Colonist Run and you have no influence." Nope, she said, they just contribute the money.

Well, I said, maybe you could bring it up at that review meeting you are going to have after the race (the ones the volunteers told us about). She said she definitely would.

I said, that’s odd because when we talked to the head of the volunteers about something to bring up at the meeting, they wrote it down on a piece of paper and you aren’t writing anything down at all. She just put on her, “This isn’t my problem smile” and stared at me (and wrote nothing down). And I eventually went away, which is what she wanted.

So I went back and got my camera and started taking photos of the people and then went and asked nice as pie what the guy who told me “you got your medal….go away”, what HIS name was. It was Jason. What is his last name. Now Jason, perked up at this and said (I quote), “I am a private events coordinator, I don’t have to give you my name.” And wanted to know what this is for. I said, this is for an article for the BBC, because there are over 10,000 wheelchair paralympians coming to our Country, of which this is the largest 10K running event at the capital of our province and they might be VERY interested to find out that they don’t HAVE a sex, that they are “wheelchair.” And that maybe in the Paralympics which will be held but a little bit away, in just over a year, in the 10K, if all the males in wheelchairs are faster, will they be the only ones to get medals and presentations?

Well, Jason and this woman who appeared started to explain there was this whole thing where they keep calling the wheelchairs a “classification” and then a “division” and “only the winners of “classes” go on stage because there is money involved.

“So there is NO money for winning in a wheelchair?”

No. Yet, by my logic, if we were but a division or a class or a whatever and just part of the “bigger whole” like “children” (because actually the top children actually DID go on stage and get awards), then wouldn’t the fastest, whether in the “child” or the “age 40+” group win the event? And since a wheelchair beat the fastest runner by five minutes shouldn’t the MALE in the WHEELCHAIR be getting the money? And if not, then shouldn’t they be acknowledged as a different “class” and be given public awards instead of a few minutes of TV and the world “inspirational.”

At this point I had all I needed for the BBC piece since they were saying that no, no THEY had nothing to do with the decisions that was all done by Diana Hollefreund who wasn’t there and could only be reached online (how..typical). And was elected by the board. Well, who was on the board?

I was told “over 40 members” – when the website, which also says about the “Wheelchair race category” that it is ‘coming soon’, that there are seven members (some of which I think were there right then!). By the way it turns out that for males and female runners you get money awards up to fifth place (and up to third in the over 40 class) in BOTH male and female – wheelchairs, gender or not get nada.

We headed home and I asked Cheryl why the Breast Cancer 5K could have so many more disabled toilets while this one had NONE at the start, NONE along the way and one poorly placed at the end. Cheryl said, “Because the Breast Cancer 5K was organized by women.”

“That actually makes sense.” I said.

Now, this may seem like sour grapes to you that I made such a big stink about the wheelchair issue (or being handed this medal with no marking on it all at). But I expect to show up and have five women to compete against, they were registered and had paid. Several dropped out. Probably because they thought it would rain (which is hell in a wheelchair). I don’t know why, all I know is like someone said at an Epee competition, when someone finished 21 out of 21; one woman pointed out, “no you didn’t, you finished 21 out of 24, because 24 people signed up to come.” So I find out that not only did I beat my time for the 5K by doing the 10K in 68 minutes (I passed the finish clock at 1:05, I was 2-2.5 minutes late starting but it seems they started my chip because I was a wheelchair while in the crowd or something so I am listed as 1:10). So I am happy about that because I tried really hard.

And if there was no award because other people got it or I didn't qualify, fine. But if you tell me that Wheelchairs don't get specific awards (when runners do) and then say that three guys are getting some award because there is no difference in sex/gender once you are in a wheelchair; that pisses me off. When you tell me that wheelchairs are “different” and don’t get presentations or money, even though they compete, they pay TO compete (the same as runners), and that I should take my piece of metal you gave me calling it a "medal" and “go away!” THAT makes me mad.

And when these are the same people who will likely be ON committees making decisions about wheelchair athletes (who they obviously don’t see us as – since Cheryl said they never once talked to me as if I was an adult), that makes me mad. This is the second largest 10K in Canada. If there was ONE woman in the 40+ class running and she finished, she would get a presentation plaque and a cash award. So why, it is because there weren’t 20 or 30 wheelchair today? Or that there are less wheelchairs than signed up does that make our efforts less? What makes us as athletes less? Or us as competitors less? As for Medals, Screw Bronze and screw committees and Jason of no name who play the “Someone else’s problem” game to avoid what is discrimination (I take it there wasn't an award for the white and 'coloured' runners as might have happened 100 years ago in Victoria). Wheelchairs are not “coming soon” as the website indicates, we are here, we WERE there, and all that shows is that the Times Colonist, the Victoria International Running Society and the city of Victoria STILL are not ready for us. When, I ask, when?

Oh, and yes, I am VERY, VERY sore!

Saturday, April 26, 2008

The night before the race and "inner voices"

The inner voices were loud this week, and very loud today. They come from statements of a real person, actions and statements of real people, people who told me that I am incompatible with beauty, and that I was incapable of creating beauty.

When I get depressed, I call myself, “the Monster” because I don’t know to live with what is written inside of me. And I have worked to write what I do see, ALL of it.

So tonight, I see someone (me) who is both very scared, perhaps as scared as a child laying outside, the first time, under the great black of night only with no home to run back to. We know it is illogical to be so scared. Fear is just one of the voices, and if I ever listened to them, the teachers, the people in authority or influence who ALWAYS knew what was best, what I could or could not accomplish, well, I am would be a far different person.

So I am proud to say I have accomplished nothing but the attempts of dreams. This is not the kind of statement to make the voices happy.

I’ll admit that I am not beautiful (more on the E. Roosevelt scale) and maybe I cannot contain beauty but I can recognize it. I chose to follow it, to be near it.

This would be a good time to remind you (I know because I hear it in my head many times an hour) that I have never wheeled 10 kilometers at one time before. And according to the bike shop today one of my tires is going (there is a bulge or something). We have driven the route and there seems to be not one wheelchair toilet. That is too bad as just thinking about tomorrow makes me desperate for the toilet.

I may not be able to post tomorrow, even if I finish, just letting you know because though I am glad so many have such confidence in me, I do have this tendency toward passing out, even while in Japan. My intent is to finish. When I say intent, I mean, unless the wheelchair fails or I am restrained I WILL finish.

This is how I wheel up a hill. I put on something like trance or rock music to push me on, I get my arms swinging about three to four pushes a second, to get the momentum high so that I can continue the momentum while going uphill; always accelerate up the hill. About 2/3rds of the way up the pain from the oxygen will hit; DO NOT LET UP, if anything, try to wheel faster. Scream if you need to (I do! Crying is fine too, just keep the F**K going!). By the time you see the crest of the hill, the motion of your going forward will be the edge between falling over or pushing the wheel. Try to focus on just keep pushing the wheel; losing sight in the left eye is not uncommon, be prepared (they have a hill over 1.5 km!). At the last 50 feet just use the thumb and forefinger, you can’t feel the rest of the hand anyway. And that’s how I race in a wheelchair….a race which is against only myself (who invited the other 10,000 people?).

If I finish, I will have a down couple hours, and up for a couple hours and then a major down spike in my health. I am not wimping out I just know that I may be curled up on the bathroom floor with spasms within 24 hours. Actually that would be a rather positive outcome. But don’t know, as I said, I have never done a 10K race before (and there are plenty of ambulances there!).

I promise to give all possible human effort to finishing. And that is the only type of beauty I hold: that of planning and fear, of possible failure and certain pain. “The future belongs to those who believe in the beauty of their dreams.” Eleanor Roosevelt.

The future has never belonged to me; I just want the dreams.

I finish with something I found; it is about how I am feeling right now along with something I am passionate about: Porco Rosso by Miyazaki. The film is set in the inter-war period in the Adriatic Sea and our pig headed pilot, Porco, makes money by stopping air pirates. He was a WWI air ace and the place where he and the pirates have a truce is at Gina’s, a pilots club where Gina sings, and where she calls Porco “Marco”. In WWI Marco’s best friend and fellow pilot married Gina, but the next day, Marco awoke in a type of heaven, the last of his squadron, seeing his friend lifting his plane to join a mass of ghostly pilots. It is here that Marco becomes Porco, though whether that is a curse self-imposed or not is unclear.

An American ace Curtis is hired by the pirates and tries to woo Gina, who turns him down; she later says that she has a bet about if Marco will ever fly into her garden. Curtis and Porco have a dogfight in which an odd trait of Porco emerges (that he is a pacifist and will never shoot if the pilot might be hurt), and Porco’s plane is shot up. He disappears and is presumed dead. But he has returned to Piccolo’s Factory (where is plane was made) and finds that all the men are gone, to find jobs in the depression, and the new head engineer is Fio, a young red head female (guess who I identify with?). She is going to redesign his plane and is quite content to be around Porco even though he is gruff and verbally abusive with her. And soon an all female work force shows up to make the plane.

When take off time comes, it turns out that Fio built a small cubbyhole in the plane for her. Porco is furious. Fio is adamant, until his plane debts are paid off, Fio is coming with him. He reluctantly agrees and returns in time to foil the square jawed Curtis’ wooing of Gina by doing flying tricks over her garden. When he lands at his secret lagoon it turns out that it isn’t too secretive any more as the pirates burst out and plan to smash the plane. Fio emerges and berates them that they would DARE smash anything she just finished designing. They decided to smash Porco instead. Fio turns and attacks THEM for needing an AMERICAN and that Porco is here to challenge the American anyway. Unfortunately the oversexed Curtis shows up, having been turned down by Gina he immediately latches onto Fio and asks her to marry him. Fio, confidant in Porco agrees to a duel: if Porco wins then Curtis will pay off the debts, while if he wins, she has to marry Curtis (yuck!). The pirates agree to host the duel, which is now a huge spectator event (and gambling one) set on a small island. While Fio can only watch, stuck now as the PRIZE.

During preparations, late at night she asks Porco if she can kiss him since maybe like a frog in the story, he will be turned back. He says no. Like that would stop Fio. It is pretty obvious Fio has her mind set on Porco but on the day of the fight, Porco gets Gina to promise to get Fio out of harms way when the time comes. And that’s as far as I tell. But if you watch the Non-American, non-dubbed version you might have an ending that tells you about the curse, a kiss and the bet Gina has with Marco.

Here, for tomorrow, “It’s my life” set to Porco Rosso. And I hope I am as smart as Fio and as wily as Porco!

Mr. Soot gets ready for 10K, Roller Derby and the “Lost Pictures” of Japan: 10th & 11th April.

Well, it is jam packed post so we better jump right in. It turns out that the whole ‘near perfect memory’ thing is a curse because Linda came home with 4000 pictures (Linda, not me, just Linda) from Japan. And it kept bothering me, “Where is THIS picture.” And “Where is THAT picture” and I started looking, and looking and finally since we made SO many redundancies it turns out that a whole section of 129 pictures was “lost” on the laptop we took with us (they probably accidentally downloaded into my ‘naughty pics Linda shouldn’t see’ file). So I took them off a backup and we have a trip down memory lane from arriving in Hiroshima, to going to see WILD MONKEYS on Miyajima and finishing with the Onsen we took that evening, 24+ hours of photos in all from ONE of the two camera (I’m only showing a small fraction, okay!).

But first, is Mr. Soot from Spirited Away ready for his big 10K adventure on Sunday. I asked and he is. We went to pick up the race packets and there was a “running fair” on. We met with a woman fundraising for assistive dogs from the Lion’s club who said I could get an assistive dog but I asked about the walking of it and who does that and she said to call the chairperson as this was “a very good question.” I also had this chiropractor read my spine and his machine about blew up as part of my neck is twisted one way to the maximum and my C sections torqued the other to the max and my T section are nerve damaged. I was, “um, I know!” (this is why I was in so much pain I hallucinated while trying to sleep this afternoon). Anyway, I bought a top, Linda bought shoes (for her Monday jogging class) and Mr. Soot said he is ready to go!

I was given a calendar this week by of one of the Victoria female roller derby team members and it is a cunning gift as they gave it to me this week and I still don’t know for sure what month it is (it is always April, right?). This is one of the two teams in Victoria and they do it to raise money for insurance which considering three members have broken a leg each since Jan. seems to be high. After looking at the calendar I decided that maybe it was always going to be AUGUST in my study, as Ausust is the captain of the team, Choka. And I bet like you, I wondered, “Is there more to this sport than I originally thought?” Then the friend told me that "NO, they do rollerderby with the clothes ON!!" and my newfound interest disappeared. Still, ever august!

Now, back in Japan a week or two ago, we had just left the blossoms and castle of Himeji by JR train and arrived late into the dockside of Hiroshima, right across from Miyajima. Do you remember, is it coming back? Well, we ate at the hotel resturaunt which had the waterwheel we had seen filling the rice fields with water all the way through the central Japan from Kanazawa. And I had my first “Japan” meal (besides the bento) as my Beef Soba! Which Linda then ruined by going on about the fish smell. Boo to Linda.

The next morning we were up at the crack of….9:00 ish and on the ferry to Miyajima. A local told us where to stand/sit and we got the picture of the ‘floating torii’ and the shine (considered the third most beautiful view in Japan). Though Hiroshima was blasted by the US with an atomic weapon, the island of Miyajima, to the south was blocked by a rise and spared. Which allowed this ancient pagoda and the amazing shrine of Miyajima to exist.
But we had come for...wild monkeys, only to be stopped by “Kaidan” (150 steps to be exact, at two different changing stations). Well this picture is taken at the switiching station, the part where they decided I had enough pluck or determination or spirit and were going to carry me the rest of the way!I only wish it wasn’t SIX guys carrying one female – it does give me a bit of a complex.

So we got to the top and I took some pictures of baby monkeys in the sun (look in the left corner), or trying to get out of the sun because it turns out that the top of the mountain is a rather hot place. Meanwhile a mother and child sunned themselves on a rock away from the dominant males.
The males meanwhile played the Wild Monkey equivilant of Playstation....personal grooming of each other!

While I was stuck in one hot sunny place, Linda was hiking all over the mountain top and had found the OTHER sign (remember the one about don’t look in the wild monkey's eyes or they will chew on your arm), this one is sort of for human AND for monkeys who can read. It seems the major warning of the dangers posed to wild monkeys is that if you stop treating them like wild monkeys....they will turn into North Americans.

Linda really is quite a photographer and it irritates the bejeeses out of me (becuase I work and wait for JUST the right picture), as she just goes about snapping things and gets the most amazing pictures, like this one, which to me might as well be in National Geographic. It captures for me what the wild monkey’s really are: monkeys in the wild, on the mountains of Miyajima.
Of course she couldn’t resist a few “baby monkey” shots either but unlike me could get them from different angles and places because SHE wasn’t stuck in a wheelchair having been carried up two mountain peaks and 150 steps by a team of puffing yet stoic ropeway employees (no bitterness!).

Down in the shrine, she got a picture of me, which while reflecting me even more red by the VERY red shrine also shows in the background the complexity of the structure and how amazing it is for something like this to exist hundreds of years on the ocean.
Flipping through the 129 pictures I came upon two, both with different colour focuses which are uncut, untouched: they are what they are (which is why the Linda style of “oh that looks nice” and thus takes a perfect picture drives me insane). One is a preperation room, look at the rope above the doorway, the complexity of the room, and in the other picture, do you remember when I told you how the monks made rock gardens so as the tide rose it would fill them and create little scenes of beauty below and around the shrine. This is just one of those.
The final pictures are of the Onsen we went to that night in Beppu, and how after hiring a room, there is the “pathway through the garden of mystery” – lit in odd green by the steam of the central spring. Then you get a gratuitous, “Oh, how come I can’t a “Onsen’s of Beppu” Calendar girl?” shot.
The final shot is the first picture Linda took getting off the bus the next morning to see the wonders and mysteries of the hell springs. Nothing I think could finish this tour of the beauty in lost pictures better than the steam, the color of the pond, the cherry tree, all of it, once again, untouched and uncut (how do you do the framing Linda?).

I hope you enjoyed the trip down memory lane, I did, though again, I am the colour of this hell pond with envy at some of the pictures Linda just....takes. But I am glad she is on my side. Happy weekend!

Thursday, April 24, 2008

Back a few days and already a bitch session: buckle up!

My nose REALLY hurts. This may be because three different people hit it about 35 times. As much as that SHOULD lead to some story about why people shouldn’t take me out drinking when I am feeling sarcastic; it was merely boxing. Yeah, remember that “non-contact” sport I do.

I have made an observation: When you have delayed neural response AND you haven’t been to class for three weeks, during bout time choosing the three fastest boxers and saying, “I hope you’re not going to hold back on me!” might not be the best long or short term plan. Good news is, while not a SMART plan, getting hit the head so often means....I'll have plans like this a lot?

I fought….I mean I bouted with the girl from my first boxing video (sept 07), who is very, very fast, like about 6 or more punches a second fast. I held up my guard and said, “I’ve been wheeling up hills in Japan for three weeks, nothing can get through.”

She said, “I can if I break it down.”

I said, “Show me.”

Bam, bam, bam, bam, bam, bam, bam, bam, BAM! (the last one was her breaking through and hitting my nose). At one point I thought my nose would start bleeding, not that I wasn’t giving back. When she was on a roll, it was all I could do to guard myself but she sometimes would drop her hand coming in and I’d catch the side of her nose and throw her whole head back. So that…fun, I guess.

Then I bouted with “Joe Cool” who is/was a pro boxer, has been doing it for many years/decades. EVERY time I moved my left hand, he stepped forward and popped me one in the face.

After the third time getting hit in the nose, I figured out what he was doing (which is a good trick when you are getting hit in the face so often)! So then I tried “Why not hit him in the stomach REALLY fast and then put my hand back up to guard.” The plan worked right until the second I hit him in the stomach and before I could bring my hand back: POW, another one in the nose.

Then there was the “feign to the stomach, stop, block and hit him the head.” I think that worked once until he hit me in the nose with his OTHER hand.

I have to say in all the months I have trained with boxing Joe Cool was the first person to actually get (MAKE) me “bob and weave” IN my chair. Throw punch to his body, use the hands to cover the head as a sink my head to my belly and swing far the other direction to pop up and hit him again in the body. Hey, let him go ahead and hit the TOP of my head, just give the nose a rest will ya!

I asked him afterward what I was doing wrong and he said when a boxer is taller than you and uses the jab you have to step back as he jabs, to make him lean forward out of distance.

YEAH. Now, how I do that in a wheelchair with my brakes locked again? I do hate getting someone giving me advice like, “Step back and make him come to you” when looking and talking down to me in the wheelchair. Maybe I should take that as the compliment that he doesn’t see me as in a wheelchair, just a REALLY short female who never moves her lower half.

That’s okay, during the bout I cornered him, trapped his glove with mine and then gave him two hooks to the ear while his body was trapped against the wall. Sorry, I didn’t get the queensbury rules of wheelchair to able body boxing so I tend to, after the 20th hit to the nose try to throw people against the wall and then hit them when their hands are down.

Um, golly! I’m really not selling this as a “non-contact” sport am I? I have also noticed that while I was away the women have been reduced to me and superfast girl. So there are like 14-16 guys now and that really changes the dynamics.

BUT…. I did sweat. Which was the point of the whole thing. So I live another week and my hands turn less dark colours (we hope). My GP is ordering some sort of lung test for the CHF (something heart failure), maybe an X-ray? And my beta blockers have been upped as he knows and likes the ER doctor from pre-trip. But the GP really doesn’t know how part of my left arm could turn blue for a couple days or both of them green for a day, but he wrote it down. I hope that will come in handy when I ask for the IVIG treatment next week (chances are slim, but why not ask?).

The current weather forecast for Sunday morning is Sunday and rainy, keep hoping for sun because once the pain of tonight dies down (about 8 pm Saturday night, I figure), the I want to be wearing those black wings for the 10 the next morning in the SUNSHINE.

Sorry this is a go nowhere post but I have had three homecare people in today which included two new people, which includes a new home care person I am training right now (each takes an hour or more to train, some are only here an hour), the night person is taking longer. She may not last until morning as I am turfing all workers who do not meet my standards AT THAT MOMENT (and she is on thin ice).

The standards are pretty much a) This is my place; treat it as such. B) I am your number one task, focus on that or on what needs I have. C) I am the boss, because I am paying between $19.67-$29.32 an hour to the WORKER ($34 an hour to the agency) which means I get to make the decisions and d) I get to determine what common sense is, and I don’t have time to give lessons. I have decided I would rather be the bitch and get some decent people than spend my time, as I have this week, almost missing two naps because people thought “it would be okay” if they showed up significantly earlier than their shifts, or got upset at ME when they showed up 30 minutes early and had to wait for me to arrive. Or in the case of tonight stood and watched while Linda took my clothes off to shower me ("Linda close the door." (whisper) 'she's just standing behind you and freaking watching me get naked')

I was told today about a care facility where there are on site care workers under the management of VIHA (that is known as “Devil’s Spawn” on this blog: the Vancouver Island Health Authority), and ALL ‘clients’ (Even though they are renting) are to be ‘put to bed at 10:00 pm, regardless of age.’ Well, one woman with advanced MS doesn’t want to (as I wouldn’t either), and says, fine, if I change my schedule I need someone here at 6:30 to get me up. “No,” says VIHA, “we can’t send anyone to get you out of bed until….10:00 am.” So, 12 hours in bed, without choice. And no, this isn’t a prison, this is the kind of place I am likely to end up once I am too “care-intensive” for home.

I just have to ask about the feminsit angle when a female case manager and a female RN and a female social worker “determine” the bedtime of a bunch of adults including a perfectly rational woman with MS. We are adults with disabilities right? Or did it turn into disability=child? Because quite honestly, I know a lot more 14-15 year olds who are treated with greater dignity about assisted autonomy than that. Anyway, welcome to Victoria, here is British Columbia: (real motto coming up) The Best Place to Live on Earth! That motto should give everyone a pretty good idea about the amount of drugs we do here in BC.

An odd excuse and plans for this Sunday

I am going to pull out one of the most pathetic excuses for a short post: paralysis. I went down for my nap and woke up not only paralyzed on my entire left side and mostly paralyzed on my right side but I had crossed my left foot over the right while I slept (trapping it). I also had my hands twisted together. It was ludicrous. For once I was glad Linda has been home with the cough as I was reduced to making mild hooting noises out of the right side of my mouth until help came. “oot!” Pause “oot!” Puase.

This sometimes occurs when I am exhausted and I seem to have a “short” in the brain/nerves. Linda came and tried to communicate with me. “Do you want to get out of bed?”


“I’m taking that as a yes. I’m going to get your walker.”

“oot? Uet? Oot!”

“I can’t tell what you are saying.”

She separated the hands and my right index finger could squeeze so we played yes and no and I was TRYING to let her know that during this questioning she was sitting on my LEFT hand which I was hoping didn’t break anything since I couldn’t feel it. Anyway, she got that I was in no shape for the walker and got the wheelchair, lowered the hospital bed and transferred me out (wow, that medical equipment comes in handy).

It turns out that Dragonvoice 9 doesn’t work that well when all you have are weird vowel sounds. And I couldn’t type even with the right hand for a couple hours so Linda put me on oxy and gave the right hand the mouse (so I could play anime on the computer), and a drink with a straw (that suck and swallow very good for not breathing it). Anyway, about three hours later my left fingers unclenched. Which is where we are here.

That seems a good intro into my doing this 10K on Sunday. It goes around my neighborhood and starts about three blocks away and with all the training in Japan I figure I should use it before I lose it (and I will lose it because keeping up that level of effort was making too many breakdowns). Still, 10K, woo hoo!

Just to make sure I did 9K two days ago on what people told me was the first sunny day in weeks. I did the hill I knew I would have to do in the 10K. It is here, by the “duck pond” (we are an inventive bunch, we Victorian’s) and the tree.
Whoever organized the race is a little short term thinking as they have put the wheelchairs BEHIND the elite runners, behind the joggers, and behind the “moms with three wheelers or other baby carriers.” All very nice but even though there were only six wheelies last year the fastest finished in 25 minutes. That is 4 minutes plus a mile. Which means someone, maybe all of them will have racing chairs and I will be there in my everyday chair. Racing chairs are long and go FAST, like 40 MPH down the hills we are going down. And they put them BEHIND all the runners AND the baby carriers? The slowest wheelchair last year finished faster 1 minute slower than I did at my best as able bodied (I will make a new “slowest wheelchair time” this year, I promise!). Oh well, I guess that is what the ambulances are there for, to pick up all the able bodied runners run over by the wheelchairs?

It was a very good day on Monday for training as it was clear blue and the colors pop as Linda came and met me once my speech was all slurry and took this pic from the path I used as my training route. Pretty, but going up and down to ocean level means lots of hells….oh, I must have meant hills.

Actually, I think I have Ruth or Goldfish to thank for this inspiration of the 10K because when I did the 5K they said it was my “best time” and I did that about atrophy and the 5K. And I thought, “Hey, I just found I have atrophied a lot; and I won’t be able to do a 10K again….let’s make another ‘best time’” I think that is how the logic went. However it goes, I just want you to know this isn’t a typical harebrained scheme but a historically inspired scheme. There is a difference.

It would be nice if I could stop taking the continuous painkillers and muscle relaxants from the training I did on Monday. At least by Sunday.

Now, the question is: should I wear the black wings during the race or not? (If you don’t know what I am talking about look here)