Wednesday, March 31, 2010

Off to Sakura-Con 2010 we go!

Hi Ho, Hi Ho, off to Sakura-con we go! We have packed 2 wheelchairs, (mumble) suitcases and some things to be signed by Noizi Ito (a favorite artist of mine, I even have an art doujinshi!). There is the World Premier of Trigun, 3 weeks before it opens in Japan, only so far… subtitles. Will keep hoping for subtitles.

We are all planning on going to the Masque Ball, and I am hoping to go to: Noizi Ito Autographing, Tea Ceremony, Kendo (martial art with bamboo swords – as shown in Bamboo Blade), Iaido (Martial Art), the Dazzle Vision concert as well as panels on various subjects. Jennie Breeden of The Devil’s Panties and Mayumi Tanaka, the voice of Pazu in Laputa: Castle in the Sky will also be there. So OFF we go (in 35 minutes!)

Tuesday, March 30, 2010

If you say ‘Potato’, I’ll say “Potatoes’!

Thanks everyone who has taken that precious time from a life too hectic to read this post. It seems that we are at the future of Luc Besson's Taxi or like Harrison Ford in Blade Runner: Do Androids Dream of Electric Sheep, barraged by images, messages, ads. Blogs now all require moderation due to spam and I get up to 40 spam messages to moderate a day (ug, no I don't want to know how to use escort services, thanks!). I use moderation not to ‘screen’ messages from people but because I find word verification difficult and I know others do as well. Also, being rejected and told you are spam by blogger when trying to comment BACK is humiliating. I am trying for a disability friendly blog.
I looked back a year and realized two things: 1) I am not responding enough to the comments that are made. I appreciate EVERY comment, and I try on alternating days to comment. I don't think that is enough, since many readers and commentors have chronic disabilities. So I am going to try to comment on every comment made AND I am going to try and blog more often, at least three if not more times a week.

I admit, these days (due to neuropathy) it takes an average of six hours to write a blog, which is 2/3rds of a day. Then add in a couple appointments and there goes a week. BUT, but YOU are the ones who are important. You are important to me, and what you think is important to me. So when you spend your time reading my writing, and writing something back I am going to try as hard as possible to respond.

b) There are a lot more personal messages. Hey, I love emails and PM because I am not exactly going out and about in the world anymore. Here a big day is when the guy testing for putting up the sling talks to me about how the beams in the ceiling either go this way or that way (honestly, that is what today was: I was in bed, with the full oxygen mask on, and he was on a ladder – but it was HUMAN CONTACT!). I looked back at the comments and realized, "Now that person emails, that person emails, that person emails, that person messages…”

The sad thing is that the more people email comments, the more hours I spend emailing back (even if only half, when an email takes about an hour). BUT, I want to be friends, and be there for people. And I will keep responding to emails. But to help ME, if you could, pretty please, split your message into a) comments on blog post – which I WILL try to reply to and b) an email – which I can try to reply to, but you understand that oxygen, hospitals and general funk sometimes delay this! While it looks like more work, it is actually the same, just part of the email is a comment (you can even cut and paste!), and the rest an email. While for me, I can use the time I save to make sure I respond to comments AND do more blog posts. Sounds like a win/win? Gosh, I hope so. Suggestions are appreciated!

And in closing, milk does a body good! Particularly if you are a cat girl (Linda has already asked to wear my cat ears for Saturday!).

Monday, March 29, 2010

the 1, 2, 3, of Anime Hair and Cheryl has a tree day

Due to every day being “Mission Impossible” I am exploded, I mean exhausted. Yup, Mission Impossible with parts of me going all odd or bursting into flame: “You will self destruct in 4, 3, 2, 1…” I pass out. That’s what A.A.N. is, an idiot of an autoimmune system hitting my self destruct button several times a day. So, after doing another three impossible things yesterday, and a couple the day before, apparently, it turns out (shhhhhh! BIG SECRET COMING!) I am (whisper..) mortal. So yes, that means my head flops over like an omelet going bad and I have days where the 100,000 little muchkins eating my nerves (which really hurts, REALLY), gets me down...on the a small puddle of my saliva. So more pictures than words today! Back to anime hair day!

Yes, hair cut with oxygen, please do not smoke during this…or use my head as an ashtray (really that last one goes for anytime, not just haircuts).

Ta da, the new me! Or so the salon would like to have me believe. It is a well known salon secret that this is the LAST time you will ever see your hair that good. This is due to various spells, potions and magnetized ions that all hair salons have. Once exposed to the harsh reality called “Earth”, you can kiss this look goodbye (unless you are a model or are getting married, or like to use enough hairspray to lightly coat the inside of your lungs). Notice the eyebrows – not red!

Now I am waiting for ‘threading’, the most painful word outside of ‘bikini wax’ and ‘high heels mandatory’. I am practicing ‘cleavage’. Just in case I need to distract someone for a moment while I bop them over the head just like one of the little field mice (bad little rabbit fufu!).

This is ‘threading’ from India where basically you take two twines of strong wax string and counter twirl them at speeds so they sound like a band saw cutting logs in half. Then they approach your face and do just that (only the ‘logs’ are eyebrow hair being ripped out by the roots at several dozen per second). It is one of the few times when I am actually whispering, “Go Go Gadget: peripheral neuropathy!”

Here is the post salon look, BUT I have nicely shaped eyebrows. Odd that while my hair falls out in bunches my eyebrows are thriving. I put it down to the fact that it might have to do with blood flow and blood to the eyes is considered important (by me, and my body thankfully).

Okay, arrived at park, I have the purple and red feather earrings and with the wind whipping, I have ‘Mt Fuji’ brow (this is a Japanese insult to women who had foreheads larger than about two inches I think). See, and you thought manga was useless – but now I can insult other women using five different cultures though ‘If ya going to run wi da boyas then ya can’t drink the sherbert’ might not be useful not that I have left a very particular valley in Wales (“Ack, my head is like a zoo on fire!”).

Here is Cheryl bonding with nature and with one of the Parks’ large trees. It is a very popular tree and seems to thrive despite being climbed all over day in and day out for several generations.

Douglas fir grows to over 200 feet, and since we are in the older part of town there are still a few trees like that around. The one house I was in, a heritage one, had Douglas Fir beams under the floors which ran the length of the house (50 feet?) and were 16 inches by four inches. The thought of the cost of that under - flooring is sort of staggering (which is why Japan buys all the temple beams from B.C., but they just take the WHOLE tree back to Japan).

And thus ends my tour of ‘Beths’ Big Hair Day’ with Cheryl and I looking into the bright shining future of Sakura-Con. Where all manga, binsen, doujinshi, and other delights await (oh yeah, and the demonstrations, and fashion shows, and masque balls and cos-play balls).

Friday, March 26, 2010

Welcome to 'Recreational Volleyball', and 'Walk with me'

One week to Sakura-Con, and still some hotel issues, so if you have question please contact Linda, at Linda.McClung at Also if you are coming can you email her so we can arrange a meeting place, please?

A new Postcard Project blog post here.

Last night I started my introduction to ‘integrated Volleyball’. That is what I call, they call it ‘Beginners and Intermediate Recreational Volleyball’ at the Y. I had been trying to get in since October last year and was seventh on the list and first on the wait list at the beginning of the year. There is supposed to be six people per team PLUS 2 people to rotate in per team. When I went last night, there were 5 people per team and that was it, except me coming on, so we were missing 11-12 players. The organizer said they could not be officially dropped until they called and SAID they were going to drop. Well, gee, that makes me, who has been waiting for so long, and the people on the wait list behind me feel warm and not at all like this was a clique club that you are either in or not.

The organizer was trying not to be open about getting rid of me, and after I made it clear I had been waiting since October on the waitlist for volleyball, he gave up. I told him that I HAD called the Volleyball organizer to tell her I was in a wheelchair several times AND I had specifically asked to come to the first meeting to get an orientation and been told, “No, wait until THEY call you.” He wanted to know who said that, and I told him it was the person in charge of ‘drop in’ at the Y, but I had called the organizer of volleyball.

I hit a ball underhand to see if I could get it over the net and that was about it. The teams were organized.

I knew it was going to be hell. And at the same time I was totally determined to be there, I was still dreading it. Here were able bodied people who were playing at the Men’s level net (about 8 feet high), and the women’s started a notch below that. So ‘accommodation’ to the women who played was to put the net HIGHER than the level to women, to make sure the MEN got a good game. Nice. So only one or two men could spike (as I found out as one nailed my shoulder with a volleyball) but the six foot woman on my team couldn’t. And this was RECREATIONAL volleyball. Though it played a lot like ‘Death Match’ volleyball as at first only the one woman on the team would talk to me, and then one guy. After the first game, the rest of the guys simply walked away from me and formed a group to talk about the game.

I, of course, had NEVER played volleyball in a wheelchair, and it took a couple games and me saying "Sorry!" a billion times until finally: “look, if it goes behind me, I CAN’T get it.” for the able bodied players to cover me. Here I am finding my range as a ball goes ‘just over’ my head.. Notice the teammate ready to cover me. There were lots of ‘You should just roll back” or “You should just roll a bit sideways” (yeah, look at the sideways rolling on most wheelchairs!), or “Why don’t you do setting more.” (using both hands to toss the ball up): to which I explained that I had a very small window where I could use a double hand set, above me, and if it went to the left or right, I could only use an closed fist to 'bop it', and it was a learning curve (steep) to find out what worked and at what angle.

Since 2000, instead of needing to have ‘possession’ of the volleyball it means that EVERY mistake means you lost a point for your team. So if I try to hit a ball and it goes off, we lost a point; if I serve into the net, we lose a point. Just like that. Sigh.

I had learned from badminton that if I a) showed a level of effort about 4 or 5 times that of any other player there and b) bled or bruised and c) got immediately as competent as the worte player who had played for three to six months then I would be accepted by half the players. After I dove out of the chair a few times and one of the setters said, “Here you go, and then set it to far over my head so I, the chair and all fell sideways tossing me a ways (about 5 times being totally thrown from the chair), then some people would warm up. So after a while two more people on my team would talk to me. Two others never did, nor did several others on the other team. I cheered people’s plays, I focused, I got hits and recieved the ball and got it over the net, but still for about 70 minutes it was at atmosphere of ‘Fuck! Why are we saddled with ‘this’’ (I am 'this') attitude.

Finally some people talked to me or said good hit, or ‘close hit’ like this one which almost went over the net, but didn’t quite. One woman on one of the teams we played cheered a lot and when I made a good shot she said, “You GO girl!” which was more than my own team had done. But then, I was there to prove that a) doing volleyball in a wheelchair was possible and b) working to show people there that I could play and WAS going to stay, so get used to it. I see it like seeds, that each of these people will go out knowing that it is possible, and when another wheelie joins somewhere else they will say, "No, I remember, there was this woman who came to the Y I was at and played."

I’d like to say that it wasn’t painful when the organizer joined the team playing AGAINST ours at the start, but that would be a lie. Or that having everyone make clear that they were losing because of me wasn’t painful. I mean this was ‘Recreational’ volleyball, but when you are visably different and the first person to do something, there is always going to be resistance. That is why I was glad when we lost but lost 22-25 and then the next game, I served us to victory of 27-25. It proved that EVEN with me on the team, we could still win (still had two people walk off from me instead of shake hands at the end of that).

I sort of enjoyed it, but it was very, very exhausting, two straight hours with no break for me at all. After I came home and did some cleaning I feel asleep at the computer which I had not done before, and of course, on pain killers. I have been on pain killers to function since boxing on Monday and now I am a LOT more pain. OW. But I am going to go back, and I am going to get better. And maybe one day it will be fun. I know that it makes no sense to most that I would do a sport where people kinda groan if they find out they are playing with me. A sport where it is supposed to be beginner level but they don't stop to help a beginner, and a sport which leaves me in pain. But I have done the following sports against able bodied opponents and I do not have good nerve response, autonomic response and range of motion - all from a wheelchair: Tennis (singles, doubles), badminton (doubles, singles), boxing, rock climbing, 5K road race, 10K road race, cycling and now Volleyball. Dream the impossible, attempt the impossible, do the impossible.

Apparently there is a rule which lets you use your foot to kick the volleyball (??). I was asked, “So do you stand up to hit?”, “When are you going to stand up?” and “So you can kick the ball when you want” – all despite the fact that my legs were strapped into my wheelchair. I did however do a header on a served ball that was coming close enough to me, so I did a soccer/football head butt on it from the chair. Floor Hockey is on my list of 'to do' too.

Why is there so much anti-wheelchair prejudice when I play sports with able bodied people? I can’t say for sure but these are my guesses. 1) Even though I am pretty much working my way through every sport at the Y, event organizers, no matter how much notification is involved or given, do nothing in terms of planning accommodation or integration leaving supervisors to do what they ‘feel’. 2) Individuals need to be told, taught and learn that I will NEVER play like an able body person and so how they play around ME has to change compared to other players (different is not 'bad' has to be learned too) as how I try to play the sport effectively changes 3) Any time you have a group of guys playing, you might call it ‘Recreational’ and ‘Drop In’ but it is about winning, and when someone is losing points then that person is resented. 4) Linda noted that because the players had never worked with anyone with a wheelchair, for the first two games (1 hour), they simply acted as if I wasn’t there. So if I was up the front, they would set to the other person up front, or even set over my head to get across me, or set BACK to the back people (actually not legal) to avoid me hitting the ball. Eventually I said, “Look, if I don’t get to HIT, how am I supposed to get better or learn from mistakes?” – so as time went on, I did hit some over and then some people got more accepting. 5) People have preset ideas about people in wheelchairs, or just ignorance. If they have been doing drop in volleyball for several years at the Y and I am the first wheelie to show up, people have no real idea of the limitations of a wheelchair (like we don’t move sideways, we are not tall nor do I leap for the top of the net), and carry into to court whatever ideas they have about people with disabilities/in wheelchairs.

What could have been done? 1) They could have included me from the beginning, so as the new beginners learn, I am not the only one making mistakes. Also, there were supposed to be 8 people a team, and there was 5, that is 40% missing and yet they don’t bring in new players off the waiting list, making it a clique atmosphere (plus no breaks or medical accomodation- often I would be adjusting my wheelchair or leg strap only to find the other team had served). 2) They could mix the genders on the team more, or put me to start on a team where there are more ‘teacher’ or very skilled but patient personalities. Or just a bunch of girls who want to have fun (that was the last team, who had three girls and two guys and there was lots of talking and sometimes some yelling, and one guy going, “Oh, geez, I don’t think you screamed loud enough in my ear when you missed that.” Haha. 3) They could lead by example, having the supervisor switch out players or talk to players on how to play more effectively with a wheelchair (which they are supposed to be doing for all players, so no player is discriminated against – this does happen sometimes in badminton, one very good supervisor simply would walk on court and pull players and say, to others, ‘you are coming in here now’ – it set a very clear standard of what kind of behavior was acceptable). 4) Lower the DAMN nets to the women’s height of 7 feet and 4 inches. While the ‘official’ rules make that nets be at the ‘men’s height’ of 8 feet in co-ed competition, the problem is this ISN’T competition but RECREATIONAL drop in to play for fun and skills. How is a woman of 5’6” supposed to jump high enough to block a spike that is up at eight foot and 8 inches? No one here is going to be a pro, so why not improve the nature of the game for everyone. Unless it is a deliberate decision to eliminate play at the net. For me, at the net (able to wheel under it without bending down), trying to get a ball over the net much less deal with blocking or spikes is a joke. But then, I am supposed to be over with other wheelies doing some variation imagined by able bodied people. Except it is just me. So screw that.

And as for ‘Co-Ed Drop In Basketball’ – of which no women attend, there are men, sweat, a lot of testerone, grunting and shoving to win, if I make it to autumn, I am coming to that as well. Might as well be the first woman AND the first wheelie to join that drop in group. Get these organizers to get it in the head that ‘Recreational’ means ‘fun for ALL’ not some form of ‘survival of the fittest’ where any disability or slow learning curve is discouraged into leaving.

Maybe I’m just irritated because my ‘new’ therapist on issues dealing with pain and terminal didn't work out and said at the end of the session, “Our time is at an end.” I pointed out that might not be the BEST phrase, and they said, “I didn’t say ‘Your time is over.” But ‘Our time.” Then they told me, ‘Walk with me” as I rolled and talked toward the elevator. I knew it wasn’t a great match, when they talked about a 'good' doctor for a terminal disease as one who ‘Brings in alternative medicines’. Oddly, I think palliative cancer patients might like MORPHINE more than aromatherapy (or at least the morphine before the aromatheraphy). And when I asked for 5 suggestions on what we could do, or even 3, I got one, “We could try relaxation and meditation techniques”, on what? “Letting yourself go.”

I said, “You are aware the only way I can function at this level of constant pain is to NEVER relax until I take my ‘super pain meds’ at the end of the day which still leaving me groaning and begging for relief?" They were. "And you want me to 'relax' to 'let it all in?'"

They started to ummm and 'well'

I asked if she had ANY cancer patients. No. Sigh. It was a poor match. She was the type that corrected my sentences, and wanted to be right. When fighting 'word salad' and speech difficulties that is highly annoying. So when she told me, “Of course, I can’t know what you are going through.” It was the 'Oh Fuck!' moment. Since that is exactly what I was paying to come to you, because you said you did have some idea, had terminal patients.

I asked her if she ever bought anything at Starbucks. She did that pause that checks for a trap and say, “yes, often.”

I asked, “Do you tell the person when you pay that you can’t know what they are going through?”

Oh, she didn’t like that. “No, but I do freely admit when there are experiences I don’t have.”

I asked, “Oh, so you HAVE worked at Starbucks then?” She stared at me with THAT expression (if THAT expression worked, I would have been teleported to many different planets FAR AWAY during my life).

She said “Is there any point to your filling out a ‘satisfaction survey’?”

I picked up one of her books from her row of books for clients and opened up ‘Letting go of Anger’ and said, “We could put it in here.” A laugh.

Tuesday, March 23, 2010

Sakura-con prep! Anime Hair? Hell yeah!

The secret of anime girls? It is the hair, silly! I mean sure there is the whole ‘Kawaii!’ and other aspects: the need to run with a piece of toast in the mouth, the need to eat pocky with odd assortment of clothes (or none at all), the never creased clothing, the ratio of small girl to giant gun/sword, and of course the lesbian/yuri fun, I mean ‘assisted showering’(I am prepped for that at ALL times!).

But really, with Sakura Cherry Blossoms coming down on the anime sword maiden and anime coloured HAIR, isn’t that the essence of going to Sakura-Con? And am I ready? Well, I don’t have the sword with me at the MOMENT but I would say, HELL YEAH!
Some kind soul paid for me to have my first haircut in a year. I actually had it red on top and purple underneath but the purple went away. Oh well, born to be a red-head I guess, with corset and accessories to match (note the purple in the earrings and the purple in the armbands!).

So, let’s see, do I have the anime ability to charm wild animals? Well, I am not up to giant wolves, I am sort of starting small and working upI might try like…raccoons next.

How about the ‘let’s kick some ass’ and ‘I look cool everywhere I go’ attitude? Oh check and double check.
Details later, with pictures, but yeah, I am ready to go (including other vital Anime girl essentials – though sadly I do not yell, “Go Power of Sakura Petals!” and have all my clothes fly off me while some incredibly scanty clad outfit made entirely of ribbons assembles itself allowing me to fight evil……but I am working on it!)

Sunday, March 21, 2010

Time to die? Plus Assembly, bunnies, PJ's and a lovely coffin!

I recommend the film Assembly (a Feng Xiaogang film) depicting Captian Gu during the 1948 Chinese revolution until 10 years later. It is produced out of Hong Kong, and now that China has access to Hong Kong film makers and Hong Kong has access to a 1.3 billion person film audience, amazing films are being made. This film is quoted by many critics as ‘outdoes Spielburg’s Saving Private Ryan’ and won the Best Film in the Asian Film awards for 2009. The first 35 minutes is pure, war, not ‘fancy war’ but dirty war, shooting through brick walls, using what you have, and no replacements as we follow the 132 men of this company who by minute 12 are now 47 men. They are assigned to hold the mine, on the left flank, with a series of trenches. They are outnumbered at least 20 to 1. The commander of the Army and the Captain Gu are the only two left of a Guerilla Company that fought out of the caves, and then through WWII, and now are in the Red Army against the Nationalist (white army). They captured a mountain gun and the men are very good with explosives, making mortars out of 50 lb barrels, and that is all they have to defend with, besides bolt action guns and two machine guns. The enemy has artillery, tanks, and infantry. Each man, no matter how blown up is put into the mine during a lull because as Captain Gu says, “You won’t have the energy later.” They were ordered to stay until Assembly was blown by the bugler. And if not, they were to fight until the last man.

But that is only the first quarter of the film. Gu, found later after working his way back over weeks and months, is partially deaf, having put on a soldiers uniform after a shell blows his to pieces is believed to be a Nationalist and lying. The Army has new names and no one has heard of his company or battalion. He volunteers for artillery and stays in to fight including the support of North Korea against the US (interesting perspective there), injured again. In trying to prove his company exists, he convinces command to return to the trench and mines only to find….that it is now a high operation coal mine and the small mine openings are buried, along with all of his men, under the coal. He spends the rest of the film trying to change the status of his 46 men from ‘Anonymous’ to their names. It is painfully emotional, as his friend from North Korea and now Base Commander tells him, “This is not a road you want to go down.” Only at the end of the film can your questions be answered, and the final story of the 47 both back in 1948 and as Gu, a blind and deaf man, tortured with the thought that ‘The Assembly’ had been blown but he had not heard it, finds the truth.

I watched that when I was sane enough after being sick. It was nice to think about something other than, "Will I die? What colour is my pee? How many white blood cells can I see? Is there blood in the pee?"

With autonomic failure, and without the ability to sweat, peeing is the only way to release any toxins or dead cells. After laying down I was too weak and ill during sleep and after to pee and so, because I have retention (the muscles to release the bladder and push on it to pee are locked) I backed urine into my kidneys. Even now my liver is…fragile.

When I got to the toilet, my hair hanging down was jumping as my body shook in spasms to my mad heartbeat, going faster and more erratic in hopes to cool me down. I did not look in the mirror because I did not want to see if my eyes were yellow. I decided to sleep and throw the dice since without any knowledge of autonomic failure and being inside the equivalent of a rubber body suit, any delay in the ambulance bay, in the ER, any mistreatment would result in brain damage. Ice under my head, and cold cloths on my forehead by my care worker who would not leave until Linda came to continue icing the cloth as I heated the cooled cloth in under two minutes (Thank you, thank you!). I was having micro seizures as the extra strong beat of my heart among the erratic heartbeats push super-heated blood into any damaged area. Finally my temperature dropped to a fever state and the heart slowed. It has been erratic ever since, and I fear may be permanently damaged.

Sleep, pee, drink and sleep then pee, then drink. It was all I remember. I finally could stay up for 2 hours and then the fever came again. My body had seperated into the two sides, red side and white/yellow side. My face was beet red from heat, not just flushed but red on the forehead, the whole nose, all the way down to the chin….but only on one side. By the time the fever broke, my face had lost weight….but on one side (Cheryl noticed before I mentioned it). My arms and hand was red like a fire engine, I told the evening person how red it was earlier, and looked down to see my hand, arm, up to the shoulder was just as red. Blood screaming to sweat and cool the body, but unable to. My disease had changed my face again. I want to wear the sackcloth and eye slits but no.

People often have two responses when I talk about my disease and the pain, one is to ignore, like I never talked. The idea that it hey it is just Elizabeth, 'EFM' after all, and her condition is weird and painful (and thus somehow pain is okay..for ME). This is set up socially in terminal disease culture where immediately the HEALTHY person is given counseling, has a stack of books of dealing with THEIR pain. There aren’t really any books on dealing with pain of terminal levels, or the path one has to take in order to live while dying. The attitude is, ‘They will be dead so….’ – what is unspoken is, ‘so YOUR pain, you healthy people, at their loss needs to be addressed as does the horror of those late nights of groans and agony we will never know’. For those who HAVE the groans and agony, the idea that only the person NOT in pain is having 'issues' is a rather hurtful one emotionally.

This is reflected in the other common response which is ‘I can’t know what you are going through.’

Well, honestly, no one can understand or know what anyone is going through whether it is how it feels to go down a roller coaster to childbirth, even though that is an event which happens to billions. But since I write a blog to try and help people understand, to connect myself to others, and this is my only link to the world, while I can’t understand the frustration of EDS, I try. While I can’t understand the slow alterations of self identity and the physical pain of muscle spasms of MS….I try, and I apply what I do know from my life, and the rest, I read, or talk to people so I CAN understand.

But, for most people, the fact is they do not WANT to know for a very simple (and they think 'good') reason: what is happening to me (Elizabeth) is not happening to them (add “Thank God”).

They would say, 'Who WANTS to know and understand the changes of identity when a disease alters your face in two days; when you are in pain and fevers for months?' Well, I would think everyone. Because the biggest lie is in the statement people make like, “We could all die tomorrow.” Or “We could all be hit by a bus.” That, not only a ‘Shut up, shut up, shut up, I don’t want to think about dying!” response but it is also wishful thinking to the level of fantasy.
Why? Because though those kinds of statements are the most common response to being told a friend, colleague, loved one is terminal, the reality is that the person who says it will NOT die tomorrow (chances are very, very, very, very slim) and the terminal person will still be terminal. And the healthy person will NOT die by a bus, or even in a single day but will indeed die the kind of longer death they have just been told about: perhaps cancer, perhaps starvation in older age (and if you think it is FUN or 'okay', well, you thoughy people who were 35 were ancient and slow, and now you are 35 or 40 or 45 - are you ready to die, or say, ‘Life isn’t worth living anymore because I am not 21!”? Ha!), or heart attack then bypass, then shunt, then more pain, until failure or a blood disease. That you might be 10 or 20 years older is not going to make tumors you can feel pushing out your skin, as you vomit, with constant nausea any more fun (gee, turns out 65 year olds don’t like extreme pain and dying either….odd that). So in fact, you may have EXACTLY the same thing happen to you (late stage lung cancer or heart cancer has this type of autonomic failure I have - see, you CAN join my club). So it would make sense to be kind to the present incarnation of your possible future, would it? It would make sense to tell them that you are trying to understand, because you or a loved one, or a friend has a much, much higher chance of dying in extreme pain from a disease which also has dysautomia than they do ‘being hit by a bus.’ And so perhaps treat the dying, me, and those like me as you would want yourself, a loved one, or a close friend treated not IF but WHEN you have whatever "it" will be. Only no one wants to think about that. Here is the open secret: EVERYONE DIES.

But every time a person tells me, and they do every day, that ‘there is no way they can understand what I am going through’ it only makes me feel further and further from humanity. When in fact, I AM the face of human. We are born, we die, we live, and so we suffer. And while you may not be terminal, that does not make YOUR pain or chronic disease any less! Nor do I try to stop trying to understand it, and to treat YOU as I would want to be treated, with that dignity and understanding (I screw up sometimes, please help me when I do, as you can).

For me, I am just asking others to stop pushing me away verbally, because I feel like I am out in outer space at the edge of a black hole sucking me down into silence. And on the edge of the black hole are people who, with their language and words, push me further and further into that black hole, from which I am alone, forever until the end.

My pain matters even though I am terminal. Just because I have been in pain for hundreds of days does not make me an endless bucket which can withstand pain of any kind and level. Yet, I am often treated that way, talked over, joked about (in real life, by doctors, by people assessing my pain levels, and yes, by people in the web world). Having your heart physically hurt you all the time isn’t that funny, though I may try to make a joke about it. It is my joke to make, and there is humor which CAN come back. A humor which acknowledges the fragility, and cradles me in understanding or caring, and then there is the OTHER humor which just hurts emotionally and states, “Cool, you thought you were going to die and now you have claw marks next to your bed in the wall!”

As I said to one person who was trying to be ‘caring’ for me, standing above me while I was in bed. Only they were saying all the worst phrases including, “Hey, we could all die tomorrow’ (yes, but I have a fever now).

After a while I was tired, so tired of it and asked, “What is the worst pain you have ever felt?”

I must have asked it in a very intense way because they got quiet and then after a long time they said, “I don’t want to talk about that time.”

And I looked up at them, full in the eyes (well, the one eye that was working for me), and said as I could feel my control slipping away and the bands of pain rising in my lungs, “Then you might want to leave before the screaming starts.”

And they backed away from me. They didn't want that part of 'caring' then.

If the worst time you have been hurt, or been hurt by another, if that isn’t something you like to put out for people to joke about or if you like to have dignity attached to the weeks/months/years of suffering and rehab you went through after an injury – that is the way it SHOULD be. But then maybe standing over someone and trying to tell them in different ways to shut up and just, you know, suck it up, or laugh it off, JUST because they are terminal and while you got better, you know they never will, that isn’t really very funny.

It will never be funny. Because the dignity you take away as they sob, is the dignity which you will be stripped of by the next generation when it is your turn...unless we stop doing this and admit that we are going to die. And treat those who are dying better: Try to understand, respect the efforts they spend and sometimes, realize that we ALL HATE visiting the hospital. But also that time spent going out for coffee could be giving a person who has seen no one face to face for over a week, ten minutes of being treated as an equal human, in an accommodating and loving way.

Okay, insight over….FOR NOW. Don’t make me take out the big book of fatal fairy tales (Gorey might have done that). The one thing I learned beyond that day after day of surviving, with no cards yet asking if I am okay, or if I was still alive was that I need the fun THERE - so I have a hankering for some more exciting PJ’s. If I am to spend more and more time in bed (and Linda and the Alexandra Hospital see the degeneration accelerating/going quickly and a guy will be here this week to put in a sling for me, and they are putting new controls on INDY), I want some FUN PJ’s. I want (pause due to embarrassment) some PJ’s with ears! I am actually patterning this thinking after I saw a particularly femme uke who had PJ’s with bunny ears and thought, “That would be kinda cool.” (Oh, I am taking fashion tips from uke’s?) So, at least I have that to search for. Oh and here are the bunnies near the university and hospital which I am sure have NO influence on my desire for bunny or cat eared PJ’s.

The day before I got very ill I went down to...the DVD rental place (as you might have guessed by the review at the start) and saw this on the way. As you can tell, it is a hard and dreary trip down there. Ha. Not. Linda came with me due to my, um, falling over, passing out, and not coming home issues. Right outside the home we heard and then saw this bird pecking holes in the telephone pole above us. He has a grey body, blue feathers and a white head, did some hole pecking (this sounds dirty), found a bug, preened and continued. I am used to seeing the red headed woodpeckers out in East Sooke, and ahhhh, you do not want them waking you up every morning, I can assure you. Still, wildlife (do the bunnies count as wildlife?)

I have added a couple things to the wishlist, two are DVD’s as I have the little player now and so I can lie in bed with ice and a fan and watch DVD’s instead of lying in bed moaning (because it is like thinking about the finger you slammed the hammer on – oh that REALLY hurts, but if someone turns on, say, the USA v. Canada hockey game, the throbbing goes into the back of your mind while you scream that "oh my god, can't they see how open they are on the left!"– that is how it works). Except the more pain, the harder to understand so: BBC and foreign films (good days), USA TV that is really good (medium days to bad) or anime. The more pain, the more the need for an engrossing experience. I will try to explain it another time.

First, THE COFFIN has come down about half in price. It is a black coffin, with roses climbing up the sides, with a black winged woman atop.
I have had it in my basket for many many animals (um, pages of time on calendars? So months/weeks/years), but only now it dropped about half price so I put it on the wish list. BECAUSE it is not just a 8.5 inch coffin but ALSO a box that is over seven inches long and I can put cool things inside, like stuff I have been given or is precious to me. Do you have a box like that (maybe not a coffin, but you know what I mean)?

Also is the Anime Noein, which is voted the best anime by anime watchers in the UK. Here a top ten reviewer gave it 9.7 our of 10 – it is about our junior high selves and our future selves, set in a sort of time travel, future war environment. But through it all the question is, which people stay true to themselves and which decide to ‘go with the flow’ or ‘do what they are told’ or become something they hated, or hate themselves? An interesting question. I have never heard of it (which I admit interests did I not hear of it, or did I and it is now in the 'dead' part of my brain?), but then I had never heard of Eden of the East (or East of Eden) and watched that and it was AMAZING – each episode (only 11) felt like 5 minutes instead of 24. So, can so many tens of thousands of anime watchers be wrong? I dunno, on the list it seems a New set is $19 and like new is $17 so I will save for that, or hope for good Amazon sales of the books I put on (amazon is good for selling if you have very, very, very limited energy - push sell button, enter amount, tada!). Or if it you know, mysteriously appears from someone, I could send it to you to watch too, after I watch it... (with a big thank you card)

The other is a famous director who burst onto the scene with the debut film he had made himself and his fiancée sang the music. It won all the awards. This is his third film, about six interwoven stories and titled 5 Centimeters a Second (the time it takes for a cherry blossom to fall) and went out of print almost immediately (sometime in my ‘black/dead zone’ – the time I can’t remember), so in the US, the only copies are $100+, but this is on Amazon from Australia, at $37 (still way too much for a single film!). My little player plays all regions. So if anyone in Australia sees a copy of this for a reasonable amount could you please let me know?

In manga wishlist, I am looking forward to, Fate/Stay Night, Cactus Girl (out now), Butterfly/Flowers 2 (out in a few days and is about a girl in love with a company man who was a servant of the high household, now bankrupt - she loves him, she kisses him, he says, "I understand....use me for practice for a suitable partner, my princess"), and Maid Sama 4 (oh, so, so FUN!) and a host of new manga that are launched pre Sakura-con (though if bought through amazon they are up to 35% off - far cheaper than getting it from a Sakura-con vendor). The next big launch for DVD’s and manga is "late May" and I don’t know when that is. Linda says it is not now, nor is it soon, nor is it ‘very soon’, or ‘soon soon’ or ‘later but soon’. So I have a feeling it is long, long long – but since to me, a week is just over 2 weeks long (because I can remember say 2 days, then 3 days then 2 days, that makes it 3 units, so 3 ‘weeks’ – but other people see that as 1 unit, 1 ‘week’ – this is the frustration of not really ‘getting’ time anymore).

But for now, as I worked through the night with Linda and Cheryl, until 10:00 am to do postcard for people (we got 73 done and stamped!), I am going for a LONG nap. And then, depending on my age (8 or teen or young adult), I will watch something with Linda, or if I am really young, she will read me a book. I am not ashamed because this is just what is. I am not ‘Elizabeth except when 8’, ALL of those are Elizabeth, just different in viewpoint (like the young teen Elizabeth, according to Linda coming out of the bathroom with her romance book and saying in this totally shocked voice, “This book has a man and a woman and they are have a RELATIONSHIP, and they are……(so shocked I can’t say it out loud so I whisper)…not even married!”). So when I wake up and am younger Beth, Linda sort of hides the yaoi, just in case I start asking too many questions.

So that is Bunnies, and PJ’s and a film recommendation and why, I hope, you will try to understand, as I narrate what occurs and why to me, and the pain that occurs because, I guess like the dentist, just because you don’t WANT to know about going, doesn’t mean you aren’t going to end up having to go (even if like me you brushed your teeth 4 times a day).

Thursday, March 18, 2010

Some training, some static during our broadcast....cue screen card and music

I apologize for this rather crap post which will be interesting soon. Or rather is not interesting because of having to go to Queen Alexandra and all that happened there and then how things went really left turn, and now not so good, if radiating pains from the heart across the back is to be believed. Bah, until I shee a hand shrivel….oh crap, and it is right hand too. Ah, I will be away tomorrow and one of several locations, um, bed, hospital or up at the Y trying to sweat because…..I was too ill on Monday – not at ALL like today, no, I am just the picture of perfect health, or would be if I was strong enough to move my head from where it has fallen on my shoulder. Actually that is an interesting way to view the world…..ahhhhk, oh my GOD! Sorry, that was my heart, I think the man with the big reaper is using it as my door knocker – yes, I am paying attention!

Oh, I went for a wheel, two going out today which I shall count as training. One was looking for Linda who claims she was not lost at all, and she is probably right, when it comes to time and places, I am sure to be wrong. I have spent a great deal of time today thinking about all the people I know and the people and lives they had, if they have a chronic condition, before that, the person they thought they would be, saw themselves as. Sometimes down here in disability world, it is too easy to pigeon hole someone into a disease, I know I do because I had it done to me over and over yesterday and realized that no one could either see me NOW, nor could they see the same ‘me’ that walked around before. And how that ‘me’ from before had all these dreams and plans that are still embedded, however unrealistic.

I hope I get back to put up the picture of the woodpecker. I have a manga on the wishlist I will get, Loudest Whisper 2 which is all about the sharing of a fantasy, and I will get that as it seems sharing fantasies is in many ways one of the most intimate acts. Yes heart. Lie down, stage right.

Sunday, March 14, 2010

My bit of flesh, thankfulness, breathing, kindness and Linda

Last night, or rather the early morn, I came in and told Linda goodbye. I thought I was ‘at peace’, I had finished most of the work, postcards, gifts, and other items to send out. I had damaged my cheek so badly blood filled and came out of my mouth because I can’t feel the inside of my cheek when I chew, so I just kept biting down. I found out that what I though were a couple stray hairs (you know those annoying ones you have to pull!), but when I looked in the mirrors strips of flesh were gone. All because I did not know the strength I was pulling nor could feel my fingers or my face. So I had literally pulled strips of flesh off of my face and saw a 'me' with raw flesh and blood running down my cheek, and I had felt nothing. I thought I was ‘improving my image’.

Linda said that when I came in to sleep, she had never seen me beat so far down. So far down she didn't know how I could come back. I don’t know if there is a part of me that hasn’t had an accident in the last 48 hours (one knee and bone into my desk at high speed due to an error on Indy, one long fall which ripped my left shoulder, ribs on front and back, ripping under the ribs on the right, my feet have sections with no flesh on them, and my arm up to my elbow was purple like dark grapes while my fingernails were an almost florescent blue). But I got what needed to be done finished. And after it was done, I sat and thought about Linda. Linda goes on even more than I do in some ways. In all times, through all of her problems, she still helps and protects me, supports me, cradles me. In pain so bad, I cried for over an hour, she was there. Though the good and the horrid, to the simply unrepeatable vile experiences that beggars belief a human could live though it, she is there. I realized that the losses I feel are because I was so blessed with so much to lose.

I do believe in a person’s right to die under certain circumstances, but in this case, I just felt the disease and the worries all lift away. Like someone whispering, "Don't worry, you can sleep now", so I lay down. Linda had come back from the friend with cancer talking about the nightmares she had. I remembered those. during all the testing, and some treatments, there were nightmares every night, for more than a year. I asked Linda, “Do you want me to tell her the truth, that once she has lived through enough, the nightmares run out, because whatever you can imagine, they have either done to you, or you have experienced the pain of it?” She didn’t think so.

I had not thought I could lose any more identity but somehow peeling off the flesh from my own face did it. I struggle every day to feel human: do I have a gender or am I just a series of crashing bio systems, some yet to fail, and others in or finishing failing? Human or not, animal, or something ELSE, I feel thankful: thankful to every person who has helped me, who has emailed or sent a card, gift, letter or a package. I have tried to respond to each one, as the disease allows. It is always 'As the disease allows' and this week, it doesn't allow much! I can’t do ‘this’ alone – ‘this’ is the 60%+ of my life that I spend, as noted by the psychologist, just to stay alive another day. I can’t get depressed, I can’t get self destructive, I live in a disassociated state because I have to. And if you wonder if you are going crazy because you can’t stop thinking about your illness and you seem to take in life changing news like it is nothing and feel dissociated and you feel on the edge of madness... It is because you are! Because that is the only way to survive!

I asked a friend who was going through this crisis of possible terminal disease and worried about the feelings of coldness/dead acceptance of that which should provoke more emotion, that perhaps she was a sociopath. I told her that we were both A-type personalities (big laugh) and that we did what we needed to survive. I asked her if she was told her disease was in her leg and spreading what would tell the doctor. She said, “Cut off the leg.” I asked how soon. She said, “Today.” – That’s not a sociopath, that is a survivor. She will survive.

Those like us don’t have the luxury of PTSD therapy, or even full PTSD, it is just that we leak a bit of the madness around the edges of our lives. Because we can never stop, never get a break from the trauma and stress, or it will wash over us and we won't survive.

How to avoid the nightmares? I don’t know, I just know that having them means that the person is preparing themselves to do what MUST BE DONE to survive.

But for me, I had come to the end. And so I said goodbye and I lay down and I fell asleep and I stopped breathing.

And started, and stopped, and started. I did not know this until I woke up shortly after and my stomach was full of air, and I wasn’t sure to hope that I had rested enough for the autonomic system for the lungs to work, or to not. But I woke up later. And I am still here, and still planning on going boxing on Monday, not because I am not in pain but because it needs to be done, for both physical and emotional reasons. But pain, oh the pain I am in, I am a virtual opium den of painkillers all by myself! When, like yesterday and the day before, the pain swells and it is not minutes but hours until I can take another pill, there is eternity in each second. It is so bad that I just lie there and try to think of something, anything, to have a stone face while my body sobs. And sometimes, I go insane, and all sanity leaves because the pain has driven it out, covering me with a membrane of unending acid, acid that works down to the bones and places unthought of. So I hear the screams and sobs until the voice becomes hoarse. I don't look at the clock, but the the ceiling, trying to pretend this body isn’t mine. Because if I do accept that this is me, that this is my life, that the madness is always there as long as the pain is there, I won’t be able to push myself, or go on.

But I do, fragile, broken, bleeding, what beauty is left to me now? The disease steals all the faces, all the masks, and then it eats your skin, your pride, until only those who can see your heart do not gasp when they are around you. Linda knew I had hit bottom. She went and got the mail/post.

When I was in 7th grade, I was so bored because the classes were so dull, that if I could save a minute here or there, every day I could have an extra hour or two. I imagined a company, “Time in a bottle” where I could sell all the extra time of teachers repeating themselves or covering stuff they told us to read which I did read, only to have them cover it again. Time in a bottle.

Linda came back with gifts of ‘time in a bottle’ for me, most I bought myself, but some were gifts, books, manga, letters, anything that allowed me to not be here. Because not being HERE is the only real honest luxury I get. When I can only remember a few days, and those are filled with pain, suffering and injury…….I stopped praying for waking up without pain and starting praying for sleeping with pain no more.

But I woke up. And so, on to Sakura-con, I jammed a smile on my face and it turned out that all of my expressions include a raspberry. So BLEEEEEESH! to you too! I guess 'I' am still in here somewhere.

Reality is, the difficulty of transfers, the pain, it just means bed days and little access to computer. Working on small improvements. So I still have DVD’s, or manga, or books, or the breathing game when things are bad. I breath and trying to get the next breath, and the next one. I never thought that I would have to try so hard to manually control my breathing because I have to. Why won't my body breath for me? It is because I ate food. And in eating I don’t have enough energy to digest and breathe. So I let the body digest in hopes it will make more stronger, measured in small things, like being able to sit up by myself and not topple over. So I need to breathe for my body. That just is what it is.

I’ll get better. And time and days drift by but now I realize that unless I climb up and grab hold of something, work toward something ELSE, the only thing I am drifting towards is my own death. And it will come when it comes. I am too weak and unstable to work, I am too ill to do many meetings, I have very limited mobility, and yet, I go on. Grieving loss is for those who have that luxury. Do I like that I have missing skin and bare membrane on my face, my feet, my mouth, and a few other areas? No. But whether I be a monster, a mutant, a freak, a human trainwreck, it just doesn’t matter – I go on. Loss is just part of what blows away.
I have great friends. I have more people to love than I can show the love I hold for them to, than I can give the support to them I want to. Love is an action and I want to be well enough to act, to be well enough to be a living prayer of support rather than a comment that 'I am thinking of them.' “If they would spend less time praying for good things to happen to me, and actually do one of them, something would happen.” – a quote from a friend who is under the shadow. She cannot cook dinner, nor can Linda (as she is often too busy supporting me). She has what help and support I can pass on, those bits from me and others to sustain her and give her moments away from the ‘here’ – even some hours of forgetting that 'this is it.' We as humans are not in control of very much, at the end of it, we believe we are, and we assume so much, like our body, which has tens of thousands of mechanisms, will all work well simply because.....those around us do (except 1 in 6 don’t). We assume the future will be as the past, and that we have control over ourselves AND others. We assume the past will not haunt us. Good luck on all that.

Linda is battered too, so much that unexpected kindness shakes her, leaves her unknowing what to say or do, because she has always had to control everything or I don't survive. That’s why I get her romances, because I fight for me, so in the end, how selfish is that, compared to her, on a few hours sleep a day, fighting for ME? How do I give a rose that says all that I appreciate, leaving aside for those moments the guilt of staying alive to burden her, but to let her know I see how she does so much and why she does it. Because she loves me. On her good days, on her bad, on her days with headaches and days with disasters, she is there for me. For me.

It wasn’t supposed to be this way, it was supposed to be us together, seeing the world and enjoying it together. It was supposed to be me protecting her, but now, I am too weak to even hide the facial expression of pain or hurt. She cannot help but hurt me as she lifts me up to swallow a pain pill and yet, she has to do it. And do it while watching the pain she causes, etched into my face. She has nothing to be sorry for, and yet she blames herself. And I blame myself. Why, because we created this disease? No. I work for the happier times. Sakura-con will be a happy time. Parts of it. I think we are going to go up the space needle and ride the monorail. Why not? We have not done that in a long time and it is very accessible.

I like to watch her, when she isn’t looking, to see those fleeting moments of happiness, when she forgets about the disease and smiles. It turns out she watches me, doing the same. And some of those times we hold hands.

Thursday, March 11, 2010

Pissed off, knocked down, can't piss and more joy.

Pissed off because I don’t get to go boxing today. Because I didn’t sleep until 9 am. Because, yeah, bowels not a functioning. Thank you again for the manga and the books since it was not hard to imagine, like in BoneShaker (Steampunk novel), living in a toxic, zombie infested Seattle at 5 a.m. with the sound of rain and howling above me, plus my pain and a little delirium (That book is headed out to ya, V!).

This has been a bad week, two days of heart erratics, the fever returning, pain so bad that, well, people could tell I was in pain, even when I was smiling (it must be that, “I am going to eat your children” smile that pain gives me instead of the “Aren’t we having fun now?” smile). And seizures, lots of seizures, and going blind with neuro blindness, again and again. And paralyzed, and blood from nose and mouth, and more seizures. It knocked me, in my grand plan from stage 4 all the way back to stage 2 (from ‘Going out every week and exercising weekly to build reserves’ to ‘Have no reserves, try to maintain and stabilize life functions, work toward gaining reserves’). That means bed days (or at least hours!). It is why I blogged about Squirrels because while Squirrel and Seizure both start with S, one is cute, fuzzy and neurotic, and the other leaves you with bruises in odd places.

I wish in some ways I could not make what I have been going through since late Sunday sound like the flu. But how do I list what a couple hundred minutes of seeing the back of your eye sockets while your body danced like being whipped with piano wires feels like? This morning I was so weak it took me 1 hour and 20 minutes to pee. Well, to pee AND stay conscious. Either way, not getting all that I want to get done, not sending emails, not answering comments, not doing enough. And since I am not getting better but the other direction, going to have to say, ‘Lonely, love some email but may at best send back a couple lines’ (who wants to bet I write 1000+ words!).

So the disease is kicking me around like a home-made soccer ball this week (Soccer theme today). Got to try to look past that. Which is hard in those days of bad, bad pain, when my arms and body were shaking from the pain, and I was maxed out on painkillers, and seeing anything beyond that was hard. See me at a Spring Market was hard. Seeing me going to Sakura-Con was hard. But Sakura-con is now (insert number of days until April 2nd) away and I am going. Or my body is going – Sakura-con, the corpse tour! No, let’s not think thoughts like that. I will be animated, since Seattle is the town of zombies (BoneShaker again).

I am also pissed as the first thing I see when I turn on my computer at my home page is this story:

Paralyzed Soccer Player walks again

‘With Positive Attitude and Hard Work..”

11-year-old Mackenzie Saunders was playing soccer, got hit, then got up and played, at the halftime started feeling numb in her legs, later taken to hospital. Cracked vertebra with a blood clot (and swelling around the injury). They (at hospital) could not find a history of a lower back injury causing paralysis in girls soccer.

Mother says: “She has never asked ‘will I be okay?’ She has said, “I will walk again.” (I don’t think there is a SCI who hasn’t said that.)

Interviewer asks “When that day comes?”

“I guess I just want to hang out with my friends or …(thinks) a game of soccer).”

She walks out with a limp. “It is her attitude that is the story.” (well since she got an MRI within an hour of getting to the hospital, and still gets constant therapy that probably helps too – A friend with the need for admitting into the hospital due to his heart told us that now the wait list for the MRI in this town, is 13 months. He says his heart could go at any time but is waiting for the specialist test and referral, and may not get the operation “until Christmas, who knows.”)

Neurologist: “You really, really have to look in the MRI, and you can see that little fracture and there was a little, little fracture, and a little bit of hemorrhage and that hemorrhage put pressure on the cord. And THAT is what started to cause the neurologic problems.” (on questioned making a ‘full recovery’ the neurologist said that she is glad the girl can ‘get around as well as she can AND the fact that she is young’ as ‘nervous systems repair themselves much better in a kid than an adult.”

During this the Camera is on MacKenzie with bold caption “PARALYZED SOCCER PLAYER CAN WALK AGAIN”

We are not told what her treatment was but it is alluded to in the interview by the medical specialist as “Intercede immediately and doctors, even if they don’t see these injuries very often, have to think sometime ‘outside the box’ and THEN you get great results...”

One leg has regained sensation, one has a brace on the lower leg.

Interviewer, “So next time I see you…maybe the olympics?”


First off, the Paralympics start tomorrow, so a –10 out of 10 for that final question (Sorry all you Paralympians, too bad you didn’t work hard and have a positive attitude!).

This story is interesting because it manages to encapsulate so much about the popular ideas about wheelchair users, paralysis and SCI while reinforcing propaganda instead of information (‘Thin blonde girls are happier!”).

Problem 1: No education at all on what an SCI is, or the types of paralysis. All we are told, (in subtitles too) is that she was going to have to use a wheelchair (they don’t even make clear if she had paralysis complete or loss of feeling), and now she can walk: due to the ‘American Dream’ of hard work and a positive outlook. (BARF!)

Problem 2: The ‘will to power’ presentation of wheelchair use and the implication that all wheelchair users could, if they were just perky enough and worked hard, could walk again. Except that spinal cord severing and a blood clot pushing on nerves are different, much like a Gillian-Barre paralysis and a SCI paralysis are different. And I don’t think there is anyone in a rehab center who hasn’t said, “I’m going to walk out of here” (unless it is amputation, in which case, there actually is a decent chance they will walk out of there).

A meta-study I referenced in an earlier post showed that perky, positive attitude cancer patients had the EXACT same percentage of survival based on treatment as the "Fuck this and fuck you too!” ones. It isn’t the image able body people WANT, but it is the scientific facts. Motivation comes in a lot of different flavors and some of it is optimistic, and some of it is, “Damned if I quit!” – one makes the front page of the news, one does not (even if both end up walking – because society doesn't want to hear, “I thought the doctors were fuck-ups, I thought the whole system was a fuck-up and yeah, it hurt like an acid bitch spitting venom but damned if I was going to let someone tell me what I do. What am I going to do? Fuck like a rabbit! What did you think this rehab was for?”) Though oddly I remember them asking the oldest living man once how he did it and he said, "By smoking a cigar and drinking every day!" Hmmm, think that health book would top the charts?

Problem 3-10) Chronic conditions aren’t a ‘pause’ button and the more society reinforced that, the more invisible we will become. MacKenzie COULD hang with her friends; the fact that her friends were not hanging with her at the rehab center says something. The fact her parents or her never thought that, only, “Must walk again and resume the EXACT same life I had before this happened” and they are REWARDED for this, makes failures of every other person who ‘gave up’ (That IS what wheelchair use is depicted as in this story, in society – with the words ‘tragic’ lingering around there somewhere).

It was an unusual injury. She happened to get very fast, very good medical treatment and was in a very high end, and expensive rehab program immediately. That makes me happy. Is she a typical spinal cord injury, wheelchair user or paralysis patient? No.

What has she learned from this? About different types of SCI’s and paralysis? About different friends she made who use wheelchairs? About adaptability in her home? Who knows? Because if she has, that’s not what we, and all the other families and teens, and tweens are hearing. They hear, ‘Just be perky, and work hard and all will be well.’ Oh, if we only DID live in a world like that.

Sure, I had my denial too, and could have had a stroke, oh wait, I DO, regularly. Part of that is my autonomic failure, part of that is because I knowingly take risks which can and have resulted in permanent injury (though not massive stroke yet, whew!).

I cannot have a disease and then ignore it, and decide ‘I will do everything exactly how I want!’ – or I can, if I want to be in the hospital or die. It might seem like that but I don't actually do that. What I do is make all the preparations possible to avoid a negative outcome, I plan with the help of medically trained individuals to avoid problems and then decide what accepted level of negative outcome might occur. I do not recommend that people who live with long term chronic conditions be giant risk takers if permanent injury is involved (now if the risk is pain, and something new and maybe that things don’t go perfectly – well, I advocate evaluating and trying the things that are worth that risk).

An overwhelming majority of the TIA’s, seizures, strokes and other incidents have to do with that I have vascular autonomic failure. I just try not to live as if having autonomic failure means I have to go inside a sterile box every minute of every day. Nor do I give up (or wait to be 'saved') if systems fail and I need them to survive. Giving myself CPR by hitting my chest with my right fist to try to get regular heart beat is something I’ve done, and something I would do again (though due to lack of feedback now, it is unlikely I would feel that before I pass out). You have to do what you have to do. I continue to try to maintain the best possible health in order to achieve the best possible quality of life, so I can do dangerous and interesting things. Haha.

SCI’s, wheelchair use, diseases, and chronic conditions don’t make you a different person, just the same person facing different situations. Maybe a different person will arise out of that. I hope that if I sneezed and was suddenly all better, I would NOT go back to be the same person, do the exact same things, with no awareness of disability issues. Speaking of doing what I need to do to survive, that’s why I have to go to bed. Because I need the energy to get better. And as Linda will very much attest, I am not always perky with a positive attitude.

Tuesday, March 09, 2010

Helmet Head the Squirrel and some 'golly gee whiz' nice flowers

I woke up Saturday to construction noise BUT a sunny day. So, good day to see the squirrels. Maybe squirrel mothers were a) desperate for food for childbirth or b) desperate for food for babies. I got dressed with help in a corset with my Lip Service hoodie and arm warmers. Here I am reading Tea for Two (thank you the person who got this for me a present, it is a very nice Boy Love story about an overly active guy who gets sent to the Tea Club as detention, and meets the refined President. The reactions to the traditions of the tea ceremony are laugh out loud, and his attempts to become refined and dignified and good too. We find that the President has been taught to act as an adult and be distant and refined since a child, and this ‘wild child’ is teaching him how to smile – he hasn’t worked up to a laugh yet, that might be in book 2!). I just talked to Cheryl and she recommends it too. The lesbian side story at the end of the book about the sisters has no influence (lie!).

We saw a lot of people, a couple 2 to 4 year old boys chasing squirrels with sticks and lots of crows (like hundreds). So not a lot of squirrels, and the ones we saw were mostly young and twitchy. Now, looking at my face, does my desire and focus to feed squirrels make me look like a squirrel? Same teeth and hand positions. Odd. Despite the giant squirrel in the wheelchair they came and took peanuts anyway. But one grey squirrel kept retreating up a tree nearby, going out on the branch and then eating his peanut while pulling off bits and dropping shell bits on me. I am not sure if this is squirrel humor or not? When we visited the the Hoh Rainforest, we saw young black squirrels swinging around on the moss. And the rangers said we were lucky as they, due to the uniform, get pelted with cones from the squirrels when they walk in the woods (cheeky squirrels).

Despite the fact that it snowed yesterday, SATURDAY was sunny and Linda stole the camera while Cheryl and I enjoyed a break and a chatand went off to take pictures of the flowers that have come up (hope they are still alive after the snow). I could use some help from readers as I show you this, um, blue (purple?) flower that looks nice. And over here are a bunch of yellow flowers that had come out into bloom (I know roses, carnations, lilies, daisies, lots of flowers, okay, it just turns out there are a few hundred flowers around where I live!). She also took a picture of me beneath the Sakura tree.
I found another squirrel who was brave enough to go through the crows and kids to get a peanut, who then acted like I did not bring the high quality peanut she usually demanded. She however was not the oddest squirrel of the day. Hands down, that would be Helmet Head, a squirrel who seemed to think that life was made of American Football (there are also some males during football season who seem to feel this way, if beer is included). Helmet couldn’t do a straight line if his hunger depended on it (guess he never learned a 10 yard buttonhook), but rather did complex feints to the right and left, bobs and weaves just to go an inch forward. So, after a series of blitz attacks, Helmet had reached the goalposts (you can see him standing up by the tree). I am holding out a peanut maybe 2 feet away, pretty easy right? Haha, that’s because you don’t see life as fourth down on the 30 yard line! Helmet leapt IN THE AIR forward, the velocity skidding his body forward over the scattered nettles.

Helmet is only a foot away, but instead of coming forward, in a blinding bob and feint to the left he then leapt to the right, completely fooling the opposition! (I am still holding the peanut out with sort of a dazed look on my face since Helmet I think got a few too many hits on the head). Arriving, he spins,and instead of going right or left, he does a shuffle step and bounds pretty much EXACTLY where he was before. Only now, with the momentum carrying him forward he immediately launches into the air again and leaps left atop the peanut which, after watching this squirrel burn up about 5 times the energy in the peanut, I have dropped.
Helmet is VICTORIOUS, touchdown! And though only 4 or 5 leaps to the left and right, he managed to get 18 inches forward. In true Helmet Head style, after the peanut is safely tucked in his teeth he bounds, getting some significant air time as he bounces a rebound off of the side of this tree to make his getaway. Good luck Helmet!

"Every party needs a pooper and that’s why they invited me, ‘Party Pooper! Party Pooper!’" – that is the odd song which means we went home after this because I had frostbite in two of my fingers. But I got to see the outside world (it is big and has a very high ceiling!). At home, we worked on the postcards for this week for part of Saturday and Sunday and did 60 postcards. That is a good number, sixty! (of course 61 sounds MORE impressive...but sixty is good too). Thanks to several donations of postcards from different people over time, I was able to meet some rarer requests. Thank you very much for both the requests and the assist with the postcards. This week due to some connectivity issue, both Cheryl and I were taking more time and being a bit more careful with the cards, so these are really postcards of deliberate care (after dropping lots of things, from toothbrushes to drinks, making sure I wasn’t stamping on my fingers instead of the postcard was a high priority).

So, was it a good weekend where you were?