Friday, August 27, 2010

'Gramps the Squirrel', manga sale plus cool charities for adults and non-dying chronic children.

Thanks to Linda drop-kicking my butt out of the house today I got to see some squirrels. Most of them were skittish but there was one older squirrel I called Gramps who not only ate as slow as a peanut could be eaten but crawled up and sat on my lap. And sat, and ate, and left crumbs, and ate and then after I petted the squirrel for a bit and he had some more peanuts. He left. I don’t know what his issue was but I have never seen a squirrel try to ‘gum down’ a peanut.
Also, I am not sure how bad the inbreeding has gotten as many of the squirrels are not that bright, but they are greedy, as this squirrel tries to carry 1/3 his body size in peanuts away.
I wanted to blog for a few days to tell you that I am having my ‘need to get money for emergency meds’ ebay sale, which is a lot of the sets I have talked about. It all sells on Sat/Sun. There are about 70 sets, which I hope will help out. A heat wave made it so I could not do much but help with the listings, but I have been going round the livejournals advertising. I would recommend Vampire Dairy, as it is complete, has the best condition I have seen and is 15 volumes of total fun. There is everything from under 13 year old reading ‘Miracle Girls’ to the 2010 Eisner Award Nominations of Distant Neighborhood and Pluto (the master retelling of Astro Boy). Brand new completed sets include Kimi Kiss 1-5 and recommendations include the cute Pearl Pink, the supernatural investigative reporter in Loan, and The Missing Girl (a mountaineer goes to Tokyo to find the daughter of the man who died climbing Everest, and takes his mountain skills into the Tokyo seedy underground), the amazing series Click (a love triangle of three in love with one person but one hetero, one lesbian, one gay – read it to find out – writer of Boy Princess – yes, gender bending may occur). Rare Yaoi, Tenshi ja Nai, and well about 50 more. I recommend clicking HERE to see them and the starting bid (About $3 a volume or so). For further pictures and descriptions please go HERE to the my livejournal account description with pictures. I do recommend the unknown country which is a princess from a small country where she makes and sells baked goods to visitors (imagine a country the size of disneyland) engaged to a giant rich kingdom – can true love overcome the vast differences in status? The first book is already out of print. As is the Name of the Flower I wrote about earlier. Odd how most everything I review ends up going cult and super-expensive (I either have great taste, or odd and kinky taste the same as people who have lots of money). Take a look, I can try to recommend some manga you, your partner or family would like. This one is likely the last ‘big’ sale – as bye-bye to all my favorites.

I had a couple grand mals today, and am hammered but I have tried for 3 days to put up this blog. I continue to try. Also, I have been reading 501 charity reports, which make for dry reading. I would like to recommend two charities above others for those involved in disability and illness.

Everyone knows about the ‘Wish Foundation’ who has ‘made over 197,000’ kids dreams come true. What most people do NOT know about the ‘Make a Wish Foundation’ is of the just under $35 million in expenses, how much was spent on ‘wishes’ - $232,694 out of $35 million. Of the various organizations who rate charities, like ‘Best Independent Charity’ or ‘Charity Navigator’, Make a wish does not get 5 stars or 4 stars. Charity Navigator has a rating out of 70 at the top (and of the top 10 charities, six are food banks!), and Dream Factory rates about 67 and Dream Foundation rates at 64-65. ‘Make a Wish’ is about 50.

Why Does it matter?

Okay, here is a really quick guide to WAY too much reading. In none profit charities, particularly those for disabilities/illness, the important ratings are ‘how many people are being employed’, ‘how much of the money is going to the program’, ‘how big are the salaries’ and ‘what is the privacy agreement.’

So ‘Doctor’s without Borders’ takes in about $149 million of which all but a million are spent on programs, no one is employed and the director takes a minimal salary. That is a GOOD charity. On the opposite there is ‘Handicapped Village’ (I shit you not) who recently changed their name to ‘Village Northwest Unlimited’. The BBB (who gets the tax info on charities) notes that ‘Village’ employs 360 people PLUS a CEO who makes $122K+ (that is actually low for charity CEO’s). The problem is that this ‘village’ in Iowa boasts that in the last 35 years it has helped a grand total of….180 people with disabilities (varying). 360 people employed annually for helping 180 people over 35 years….that is one not so great charity.

Now, just going to a single cancer site will get you 31 sites for charities that supply ‘wishes’ for children who are dying or have a life threatening illness. There is only ONE charity that grants ‘wishes’ to children, who are NOT dying, who have chronic/terminal/degenerative or other illnesses. And that is Dream Factory. It is the second largest wish granting organization in the US, but gets 1/20th the income that ‘Make a Wish Foundation’ Does: Dream Factory gets $2,435,275 of which $2,266,825 goes into the program.

What are the differences?

First, Make a Wish Foundation USA has over 65 chapters, all having a paid manager (then there are the ‘Make a wish’ Overseas organizations. So paid staff is 94. And the Chief Executive, David Williams Makes 336,000+ a year. Amount into wishes: $232,000 – BBB report.

Dream Foundation has 1 branch, it has 4 employees, and Anne Bunger the CEO makes $72,000. BBB report In fact they overspent by $200,000+ last year and dipped into their savings.

Privacy: “Make a wish”, clearly tells you (and you can find out in detail on Charity Naviagtor), that they use your private information to trade, ‘rent’ (aka sell to other charitable organizations) for fundraising. So your name and information on a list is part of your donation, because that data will be sent, traded (10,000 contributors from them for 10,000 contributors from another charity), and sold to fundraise for ‘Make a Wish’. ‘Dream Factory’ on the other hand: “The Dream Factory will not sell, rent, or lease your personal information to other organizations. We assure you that the identity of all our donors will be kept confidential.” – they just don’t do that.

So, if you want to help kids who are ill get a wish, kids who have chronic conditions, then I recommend Dream Factory.

Due to visiting Gramps and the squirrels today, some of the ODD charities from previous research came to mind. Which is that in 1999, due to pressure, Make a Wish Foundation no longer funded hunting for children (nor would it buy them guns, those darn unchristian, anti-constitution charities!). This immediately created two foundations, Hunt of a Lifetime, which provides a hunt for children with less than year to live and the odd Christian charity, Catch a Dream which does the same bringing dying children, guns, and headshots together in the Master Weaver's plan of the Lord's Beauty (if you think I am being sarcastic, I am quoting the website). If you go to Catch a Dream, I recommend taking some sort of mind altering substance first because it sounds like fishing, right? Wrong. In fact, if you go to ‘What we are about’ page you get a nifty song played for you about the joys of tweens killing: “ever see a white tail (deer) running in the wild../Lord, it make you grin,…/‘ever seen a child’s smile/(when it) takes a white tail in the wild’/Ever seen its (the child’s) eye have that gleam?’..

Plus the motto: “....these children need to know that hope does, indeed, exist.”

They have provided hunting for children in over 40 states with their hunting sponsored ‘teams’, from moose, wild turkey and I guess you could apply for bear, or now even wild wolves. Beyond that, the co-sponsor, Durey, offers ‘best kills’ videos of each ‘season’ from the ‘Catch a Dream’ requests being fulfilled. It just got a little too odd for me. I mean, regardless of how one feels about the death penalty, should there be a charity to help dying children push the switch to execute criminals, then? Or maybe, there just is stuff that dying children shouldn’t be doing since, if you come from a hunting family, and you want to emulate your Dad or Mom, they will have guns and no one will stop you getting a license and hunting with them. I guess I can’t see the need to commercialize it into a TV season and DVD sets much less pay to ENSURE the kill (that isn’t hunting then is it?).

Let’s get away from that to the first, the largest and one of the VERY few organizations to ‘fulfill dreams’ for ADULTS who are terminally ill (including hospice admittance): Dream Foundation. Because dying sucks at any age, and if you are 19 or 23, or 30 or 50 you might have wishes too. ‘Because adults have dreams too.’ Serving all 50 states out of one office, founded in 1994, while Make a Wish is almost at 200,000 the Dream Foundation is trying to reach 10,000 fulfilled dreams. The Dream Foundation works with 19 year olds to 70+ year olds, they realize that at the end of a long term illness, medical costs make it very difficult for even relatives to come and visit at the end, or children to go out with a sick parent. “Dream Foundation operates on a small cash budget and relies heavily on non-cash contributions. 75% of dreams granted benefit in some way from in-kind, non-cash donations, including frequent flier miles, hotel rooms, restaurant meals, etc.”

The most common ‘dream’ is to see someone. To not be alone. And so under ‘ways to help’ donating airline miles and other point schemes make a difference, along with non-running vehicles (which you can then tax deduct!). I know the difference because someone donated a bunch of loyalty points to Linda from a pharmacy, and with those she was able to get almost two months worth of the over the counter medicines I have to take. It made a really big difference for us. I was the recipient of a hotel room in the same way. Without it, a trip wouldn’t have happened. I don’t know how to repay that quality of life improvement than to be grateful and try to pass it on.

I just thought that you would like to know about two charity programs where you could make a difference and not have it cost you anything at all. Like we say in macabre humor, if only ambulances had frequent flier miles.

Oh, and last weekend, 36 postcards, I am slowly making my way though the list, as fast as I can, okay.

Sunday, August 22, 2010

Book Reviews shaking you awake: The Off Season, Harmony and Chi

One of the best (teen) books I have read about females in sports also happens to be a realistic book about a C6 spinal cord injury. It is called The Off Season and it feels like reading about growing up, some combo of Linda and I. D.J. is the youngest sibling and only girl on an individual milk farm that does what most do; the mother works as an elementary principal to bring income to keep the farm afloat. All so cows can get milked twice a day, so that D.J., who kicks ass at softball, never gets to finish a labour day game. Why? Because cows don’t milk themselves.

D.J. fought the previous year to play linebacker on the US high school football team (yes, the boys football team). She is over six foot and plays basketball primarily but both her brothers play college football – it is the way to get an education. D.J.’s boyfriend is the Quarterback of the rival towns' team and the one she sacks in the pre-season scrimmage. D.J. is a linebacker due to skill and hard work, not because she is a ‘token’ female. Meanwhile her friend Amber has come out of the closet as lesbian and due to harrassment lives with her lover. Amber and her lover both work instead of high school, saving up money to drive to a place for a new start.

Suddenly, with a shoulder injury that could affect her basketball, and her brother Win getting a bad blow and being hospitalized D.J.’s life changes. She can still be a linebacker, but the shoulder injury will affect her basketball and basketball is the way to a scholarship to college. Meanwhile, Win, who had a spinal injury is now a parapalegic, but just lies there, refusing to speak, and she has to be the strong one, with her mother injured and her father trying ‘organic’ and turkeys to keep the farm afloat. Days doing homework in Win’s room and nights drying his eyes from his quiet crying. She has decisions about her own life to make, about the sport she loves and fought to play which she has to drop if she wants to play the sport (basketball) which could take her all the way. And in the midst of this, she is dumped by her boyfriend for being ‘too tall’. It is the reality of it all that makes this such a great book. There is no magic solution, only hard choices and just gutting onward.

D.J., like her father and brothers has had a hard life, one where being ignored at school hurts but compared with a mother with a bad back, having to take care of the farm, doing the schoolwork, basketball, football, no money, it is just pain. Right now she needs to be there for both of her brothers, the one who is now a C-6 and the one who has to be told, ‘I’ll take care of it, just go back and play college ball, and play well enough to keep your scholarship.’ A hard life, but one that teaches you how to be tough in ways beyond working hard; how to stand up for friends (like lifting a guy making gay slurs off the floor), how to know you will never be ‘beautiful’ but you ARE, and that is what is. DJ lives the hard life that teaches you how to make hard choices, because no one else can.

And for those of us who grew up with a hard life, looking for a book about sports, or disabilities, or being tall and female, and not puff books about sleepovers and angst over getting the right spring dance dress (like WE would be invited to sleepovers, or have that angst when running wind sprints for an hour every day before school – more like trying not to puke). Wearing old shoes to school with no tread because we couldn’t afford others, and our basketball shoes were treated more precious than our church mary-janes (though parents wanted the latter polished a lot more often). Here is a book for the other 20%+ of us. One book versus thousands, but it is a great book. And helps you know you aren’t alone.

For my mental health I have been reading Harmony by Itoh which was written while he had cancer, and edited in the hospital during prolonged treatment. He died from cancer, having only written two books, but said in this book the things that can never be said, have never been said – and it won the two awards of best Novel for the year Japan.
"resource awareness can go fuck itself. My body isn’t here for the admedistration. It is not here for any of you. It’s only here for me. ‘these tits, this ass, they belong to me’”

A book about Tuan and her teen friend Miach Mihie who sees the referring to youth as ‘resources’, to women’s wombs as ‘resources’ as exploitation. The whole society where honest feeling, expressed openly in a way seen as ‘out of control’ has moral meaning as ‘wrong’ or 'socially unacceptable’ is exploitation. She and Tuan plan to show that their body is theirs alone by starving to death. Tuan wakes to find Miach dead and she is now alone is a society where her acts, her reactions, her health are seen not as a part of HER, but as part of her responsibility to society (eat well or burden society, produce children for the next generation, be a good workers, a good resource!). For a child who was sexual exploited before joining a society of conformity, what difference is there between a man with a gun who tells you he owns your vagina and a Minister of Family, or Minister of Health who says the same? A society where displaying raw emotion was punished as even our reactions are ‘owned’ by the collective?

“A vast wasteland of public correctness and people as resources”

Anyone who has been in the medical system, particularly a female, has learned that certain emotions, over emotion, certain displays of intellect are not acceptable and clamped down on. That illness makes you a property within the medical establishment, things like privacy, or confidentiality end when every nurse knows your chart. Comply or be forced to do so….for your own good.

What then the different between death and the governments, groups, businesses all trying to control and manipulate our will and consciousness? The Utopia we are offered is Harmony, a life without consciousness where we buy, we exercise, we live all according to expectations. It would be Harmony, it would be Utopia, there just would not be an ‘I’.

“It is over life, thoughout its unfolding, that power establishs its dominion; death is power’s limit, the moment that escapes it; death becomes the most secret aspect of existence, the most private’--Michael Foucault.

The first question that plagued me when I became disabled was ‘but what worth will I be to society? Why do I deserve to live, to be supported?’ – this book attacks the idea that had so wrapped itself into me that even in sickness I was trying to be a good ‘resource.’ It is a book that transcends genre, and I will probably take it with me to the hospital. Far better than those watching and ordering I follow Kubler Ross’s stages like a timetable; trying to tell me how I am ‘supposed’ to feel, and what five simple steps billions of deaths will all take (it is a theory, that’s all, one which works for SOME people).

Hard lives, hard deaths. It takes courage to write about them.

And now for something complete different.

I’ve referred to Chi’s Sweet Home before, but seriously, if you have a kitten, and you like cats, then you will like Chi’s Sweet home. It was a TV series with about 100 five minute episodes. Each book manages to put the entire season in one full colour manga book. The viewpoint is of Chi, and while sometimes sad when Chi remembers her mom, and goes looking for her, it is often the impulse fun of kitten. But also sometimes tainted with some ‘grrrr’ toward the guy who took her to the vet (and had the thermometer up THERE). If you get the books before the release date (August 24th for the 2nd book) you get the book for $9.41 which is less than we paid at Comic-con, 33% off and all. (oh, the links here produce no revenue, this is an ad free zone, I just put them there so you can get the best price easily if you decide you want it). The best review for the book is for you to experience it, so here is a ‘episode’ from season 1, when Chi finds the OFFICE with so much to play with, like computer keyboards (I have received many emails with extra letter from people who have had kittens walk across the keyboard during the email).

Everyone who has read these books recommends them. So grab a copy for almost $5 off when you can (that’s almost 55% of Chi’s next book paid for!).

I just want to finish saying a bit about how glad I was to see The Off Season after reading literally over a dozen books from Girl in the Arena to Forest of Hands and Teeth where the female just hangs about waiting for the alpha male to help her, and marry her (add zombies, gladiator, no food, a cone around teens with new mind powers or some other odd future). The young adult fiction for teen girls IS Margaret Atwood’s the Handmaids Tale only without any irony. Why do only men patrol the fence? Why can’t the main character make up her own mind without a guy to lead? Why in the future is there gladiator combat but the women’s league is discounted? Well, that’s just how it is, so learn to look good, be nice and wait for some guy to marry you. If you think I am joking, looking at the HUGE bestselling series The Mockingjay Trilogy, where our heroine Katniss learns that while she has to KILL the other 24 participants. But wait, nice girls don’t DO that. So instead she get a REALLY good stylist and makes a HUGE impression with her dress. And ends up being NICE and friends with two others, and somehow is the survivor without killing anyone (except this nasty girl who was attacking her while she was laying flowers on the grave she made of a child – geez, is this high school, or a battle arena?). The Second book, Catching Fire, has her sucked back in with double the participants (now she has to kill 48 people), except of course she has her super stylist make her have FAB hair and an amazing costume so the TV audience love her and ends up…killing no one….again (I know, a fight to the death against 72 people and she WINS, by having good MAKEUP!!!). It is so popular that there is a home game, so you can play the Hunger Games Strategy Game – you can wear the t-shirt, get the key-chain. Why make hard choices when you can learn to turn that smile and social pressure to be nice into a formula which makes 70 people kill each other and you survive (if only life was like that – IT IS NOT!)?

The new teen books this week included one of a future post disaster (which all the teen books are about), where it is an island of women, who protect against the enemy: MEN. Okay, kind of boring old story that. But wait, our teenage watchers and hunters find an old ruin. I love ruins. And in this one they find things which turn their world upside down. Ready???? They find high heel shoes, and make-up and fashion magazines. Then return to the main village and start to question why they have to do what they do. Yes, the high heel shoes and make up empowers them away from being able to take care of themselves. The book even includes ‘talking points’ for classes. Can you see why after that a REAL life when you have to get up and milk cows even when it is freezing and you might, golly, chip a nail is such a relief! To see a growing woman who actually WANTS something and is willing to fight for it, and that isn’t fighting to be noticed by some guy she will hope will marry her.

I don’t wear nail polish, because between falling down, manual transfers, manual chairs and the rest of disability life, it requires someone professional to put it on, and lasts a few days. Nail polish is nice, it is pretty but I don’t need it to live. Good goth earrings are another story altogether however!

As a weekend relax (for me, using your brain IS one of the greatest pleasures), here is a music video to the Unusuals (the NY police). The first part is a good and nice police officer being blackmailed by a bad guy from his home town, trying to decide what to do, arrest or do nothing. The second part is about the Murder Shop – where in NY, you can go to this shop and get everything from uniforms to ways to kill whoever you want. The Police decide instead of shutting it down to keep it open. However, SO many people come in, and they arrest them that is it just darn depressing, but even when they try to quit, people are begging them for help in murdering someone else (the depressing irony). Lord Lord Lord!

Wednesday, August 18, 2010

Illness and 'Try or Die': alive or living? Sometimes just surviving.

I wonder about when ‘those things that must be done’, the horrid things and the tedious things that it takes to keep going and allow my life to continue somehow BECAME my life. There are times when maybe they are part of my life and there are ‘survival times’ when it is just that: surviving. But with my memory problems, it is soon that all I know, in the smallest fibre of my soul is that I am devoting my all to keep the organic systems that still kinda work still working: spinning plates with shaky hands.

I am in the tail end of more than a week of a heat wave. It is hot enough and long enough that I all know is this little room and the air conditioner here. I sit here in Indy and sleep in the makeshift bed beside Indy because outside this room, the apartment is in the 80’s to 100 degrees plus. And outside, the heat extends another two days. Going to the bathroom is a preparation in endurance, because the heat makes me fall over, fall down, limbs not working, brain not working.

Heat hurts. It is like having salt blocks weighing your back and limbs down: grinding your joints, making the muscles scream in stretching, creating invisable sores. The body aches, it cannot stop from aching. Even in the little room it hurts. I sit in front of the air conditioner and I am thankful that it is not worse, and I hope that this time I can keep my sanity. This day.

Four walls, and an air conditioner which sent me into tears for half a day because the compressor wasn’t coming on. And if the compressor didn’t work, I didn’t have anywhere to go, and it just got hotter. Each day my gut was full or more air, my lungs not recovering, purple hands and arms all the time, because of the room and the limitations of the temporary bed.

This is supposed to me telling you why though I am doing four hours of research a day, my blog post on Oregon is still coming. This is my fourth time and second day writing this ‘short’ explanation because I don’t know how to make the surreal real or make it so readers know that a clonic-tonic seizure hurts every time, and so does heat exhaustion. And my lungs are tired of breathing. And I am tired of reminding them. Because I asked Linda last night, “What goals do I have.”
“Stay alive.”

“What plans?”

“Stay alive.”

I drag myself to the bathroom and back to bed. I did it backwards yesterday because I didn’t know if I could drag myself forward anymore. I spent the hours needed to evacuate my intestines and I wasn’t well. The night was pain and I woke to a fast pounding heartbeat of blood desperate to trigger the sweating, to cool me, but it can’t. I had a headache, a fever, nausea, dizziness and skin that was actually grey. It was full heat exhaustion and I could barely move my head. So I did a little research and resizing of photos on the Oregon blog post until I couldn’t see right anymore.

Then I lie back because I knew I wasn’t going to be able to lift my head again. That day, I needed help lifting my water to drink. I lay there in Indy, until sleeping, then dragging crawl to the bathroom, and then back into THE room. That was a long couple days.

I want sick leave. I want to be allowed to relax and exist as a sick person, instead of just being ill. I want the luxury of being depressed. But I can't. Because even sick I have to remember everything, from what pills and medication when (now 10 different times a day), and drinking always, the same water, three to five liters a day or more (now you know why those Brita filters on the wishlist are important to Linda - try sucking down five liters of gagging gross water every day: try watching some you love having to do that). Even when I can’t lift the bottle, I have to drink. “Are you a quitter McClung?” my inner coach yells at me, “You want to spend days living with consequences because you are so lazy you can’t do what you need to now?” Any insult as long as it works. Oh, I am tired the hurting heat brings, and my brain and the world but I drink and count and take pills (and then try to take them again because I forget and have to be stopped, or panic because the pill container is empty); I check about the visits we need to make, the forms to be filled. I can’t lift myself into the wheelchair but if I don’t get the toxins out through my pee, they won’t come out at all, and I drag myself to the bathroom again.

Last night I was so weak that I couldn’t move my head, couldn’t turn it, and it had fallen to the left. I woke four hours later with it still there, not a movement of a muscle on my body during sleep, I was so exhausted. But it was time for me to pee, time to drag myself to the bathroom. And then I would sleep some more.

I wonder if this is why others with this disease die and I don’t. Because they took a day off? Or they took some afternoons off until they could only lie there, unable to do it anymore?

Linda, when relaxing reading a book, or job searching goes to bed three hours late. She can’t remember a time when I just kept doing stuff because I was having fun, just gave into temptation. She can’t remember a time I slept in during the last two years, not when I wasn’t unconscious.

And during this I still work or plan on going out, on working hard. Even though I can’t get better, can’t regain function, I can only slow the degeneration down. Loss is when things are out of control and we hang on and see what is left at the end of it.
I feel like I am on a small sailboat and everyone I know is on a cruise ship ahead of me. Their life moves on, things come in and go, relationships, plans, sometimes they just don’t have time anymore, and they stop coming to the back of the ship’s deck to yell things to me. While I am in my little boat tossed about by the wake of the cruise ship, but trying with everything to keep up somehow, to be someone they would want to be part of their lives. But the reality is they can't hear me, not way down here, and the sound of life, the waves, the wind. That's what the blogging is, trying to do more, trying to show that unheard doesn't mean gone. I bet a lot of you know that frustration.

People up there, way up above the sheer walls of a ship, say I am inspirational. If that is true it means they are inspired to places I can’t go, to lives too busy to include me. When for me, THEY are the ones who inspire me: to keep going, to keep at it because I don’t have blood family and the one place I want to be is up there with them, and it is the one place I can’t be.

We should be thankful for the trivialities and little choices in our lives. I don’t want to stay alive, I want to LIVE. And if you don’t know what the difference is, then you haven’t fought for it.

I watch the TV show Mercy which came this weekend. It is written by a woman and I can relate to almost every patient that comes in; the nurse with PTSD and the chronic illness, the degenerative illness, the anorexic. When the main female nurse finds the girl at 11 who has been pimped out by her mother she goes in and punches her screaming, “You did this to your own daughter!” She faces hospital discipline from the (male) doctors and says to her friend, “If I was a guy, this wouldn’t be a big deal, the police didn’t see it as a big deal.”

Her friend says, “Yeah, ‘if I was a guy’, but you aren’t and now it is just on how to get by.”

I do laugh at the doctors on the show when they say that doing an operation on someone with an oxy-sat of 90 is ‘too risky’ because my oxy-sat was in the 70’s over a year ago. That’s a doctor view, an organizational view: ‘too risky’ – when your life is what it is, and you have to keep surviving, there is no ‘too risky’, no matter how scary it is.
I watch Linda struggle with finding a job, taking care of me, trying to find a program to fund some of the pills, to deal with everything by herself. I get frustrated at my helplessness. I am told, “It isn’t your fault this is happening.” But it doesn’t feel that way. I want to put myself in a coma and get out of her way, only I know that doing stuff like that would just make her life harder. And love is making sure you don’t make their life harder if you can avoid it.

One more disc on Mercy and then I have to sell it, hope to get half the price needed for the next DVD set. Or maybe use the money for the water filter replacements we need. Always more water. Always more Florestor needed.

I don’t know what people I do. I don’t get depressed and lie in bed. I don’t feel sick and lie in bed. I don’t lie in bed reading. I don’t lie in bed watching TV. I work until I can’t move, until I can’t think. I work until the pain is so much I don’t make sense any more, and then I watch a DVD set. Because engaging means less pain control, which is less cost for Linda and less pain for me. Engaging means more language routes in my brain which matters when there are a lot of seizures and strokes. Because I am the expert of my illness and need to be able to write (though often backward) what to do to home care or Linda in order to help me.

Sure, sometimes I stare at the wall, or at nothing (that’s called a seizure!). Sometimes I stare at a wall because I am paralyzed and wait until someone comes who get that I need to have my head moved, and headphones on and a DVD in the computer. I have done the wall staring too often, and recently had a six hour stint of wall staring, unable to move, except for a thumb. And that isn’t much help. And after six hours I slept, and then, for an hour after waking, stared again. It is a boring wall. I have sussed the literal, metaphoric, symbolic and intimate meanings of it. And that is WITH a fuzzy brain. So yeah, I always need DVD sets. That’s what the DVD sets on the wish list are for.

The manga is for the bathroom, where I have to spend at least 18 hours a week to stop from getting impacted. For the rest of the time, I am doing: trying to get done what used to take 10 minutes in two hours. I went for a wheel up to the library to pick up some holds and hurt the right ribs, the OTHER side of my ribs. So that was sort of funny for the first 10 minutes. Too much to do, the aggressive defense of keeping a life, instead of being alive, even if that is just two emails during the three hours I am functional. And the things put off, that need to be done because they didn't get done before I passed out or had a seizure, or just couldn’t move anymore. “Time to watch something.” Linda says then.

So that is what those manga, books and gift certificates and DVD sets mean in my life now. They mean I don’t spend the time staring at a wall. Everything doubles up here, even ‘entertainment’ has to have at least two functional uses. But more than anything, it means I have something to look forward to. Going into the hottest room in our house for three hours to be rocking back and forth and HOPE that the intestines are producing lubricant (imagine passing gravel without lubricant….for hours!) is hell. No getting around that. But knowing that for the minutes I am not just staring ahead and hanging on, I have Biomega, or Lucky Star or something good to be able to read for a few minutes at a time can make the difference between crying for an hour while in the bathroom and not. Sometimes what tips the scale over toward sanity or just holding it together emotionally another day, or hour is a letter, or a manga I enjoy. Or rocking back and forth turning a DVD set box over and over again in my hands, then asking Linda to read the description, trying to imagine and anticipate getting through THIS, the thing that has to be done, and what good thing is on the other side.

And that is why I am so thankful for everything from letters to gifts and gift certificates.

I have to eat a pickle a day, as it irritates my intestines (which helps), and I loved pickles. I told Linda yesterday, “Oh, I was a kid and I loved pineapple, and ate it and ate it and ate it until somehow I couldn’t eat it for over 10 years after one gorging.” I picked up the container with the pickle of the day. “Promise me that after I die, I don’t have to eat any more pickles for a while.”

This is what passes for humor some days.

I long to take a break.

On the trip I passed out so often on the toilet, or at the end of the day and Linda was too tired that sometimes she just left me there, on the bathroom floor. What else to do? No health insurance for the US, no health insurance in Canada. So I am passed out. I am woken to another day, and I struggle and get up.
The shotgun in pressed against the back of my head. “Try or Die” it tells me. And I am not going to be the one who dies. Not this week. And not THIS heatwave. Not this month.

Saturday, August 14, 2010

Things in the order of their importance.

1. Still in love (with Linda)
2. Still alive
3. Worked this week to send out 54 postcards, 16 cards, 8+ small packages and some medium packages. These are the things picked up on the trip, Comi-con, Pasadena, Yosemite, Redwoods, to be shared, this is the way of living.
4. Injured left lung and bruised ribs and rib hinge, will not be better for six weeks (went to doctor)
5. Linda wanted to take me to hospital due to pain, grey face, and being out of it (plus the moaning screams though the night).
6. I saw meteors fall with Linda at 1:30 a.m., we held hands and lay on the cliff above the beach. The waves made that sound between a lapping and a roar while we looked at the stars and streaks overhead.
7. There are other medical complications right now, with no specific resolution in sight.
8. Way too much pain this week and way too much crying. Sometimes pain doesn’t break you, but stabs you like an ice pick, again and again until the tears bleed.

Monday, August 09, 2010

Unknown: that dread which will kill me, but also keep me going, alive.

The most important aspect of our trip was that….I left the apartment, and I have Raccoon to thank for that. I said to Raccoon that I would come to comi-con this year (not quite understand that comi in comi-con stands for COMIC – but it is more than that, it is a manga, publishing, film, TV, media, cinema film festival event). But as the time came closer, I had fundraised to go but I did not want to go. I told Linda that every day.

I was scared.
When things go well I can go outside with someone once a week, I can be awake 12 hours a day but 4-6 of those hours on average are spent doing body tasks to keep me functioning and alive. So, move from bed to computer, and shower once a week, and be on oxygen all the time and be in pain most of the time, but a level of pain where I can function after the first hour or two awake. And with DVD’s, manga and on the weekend postcards, there are aspects of pleasure. With Japanese works of Fiction like the Story of Ibis, or Harmony or Manga like Ooku, DVD sets from the US/UK like Life, Luther and Burn Notice, or films like Bajo la Sal I have the mental excitement again of engaging a mind which is smart, clever and taught me something by bringing me up to a new level. Because who doesn’t need to know how to make a cheap tracking device and set off explosives (Burn Notice, the McGuyver of spy gal). So, good days moments of engaged and alive, and mediocre days, DVD’s like Sanctuary or manga like Otomen or Honey Hunt to keep pain’s claw marks ignored another second and some vocab intact even if I don’t know what city I am in, or who is President/Premier.

It is a cocoon of habit which lets me remember what to do, where to go, and to stay alive while doing it.

What terrifies me is the unexpected, the uncontrollable, the random because that is what makes something which is a painful dangerous condition which will eventually kill me into mind exploding agony where even WITH help, I could die that night, that hour. So when a ‘month of rest’ to get strength for the trip turns into one problem after another, and I am passing out all the time, then hit with a heat wave which leaves me trapped and terrified. Heat hurts. Imagine those hot dogs on the grill or in water as they swell and swell until they skin splits open. That is me. I sleep and all I have are nightmares where my limbs and torso is razored off in layers like a butchers shop does with sandwich meat. And I can’t wake up because I am now in a heat coma (the heat of the blood to my brain is hot enough to give me seizures, but I am too weak to wake up), and if I do wake up, I am paralyzed. That is summer.

And if that pain is not a minute but hours and days and then see what the unexpected and the uncontrollable becomes: pain, terror, loss of function, loss of life (I don’t mind dying for an ideal, I do mind dying because of a heat wave).

A trip to comi-con offered infinite possible problem, like Borges’ shop of mirrors of ‘possible’ from breaking down in a hot California plain desert stretch of highway to a blood clot or stroke (and it WAS in the 90's for several days). It was UNKNOWN, that was the fear. Add in that my medication was running out, and Linda’s job hunting had not resulted in a single short list (problem when over 1,000 managers are let go on an ISLAND where the main employer IS the person who let everyone go – and then they retroactively hired back all of the levels of workers BELOW her, without letting anyone including her apply for the jobs – welcome to British Columbia) or interview. Scary. And of course, being B.C., unemployment is capped far below the poverty line. Scary.

So I cried and begged her to go without me, into the unknown without me, she could take a friend. But I made a promise. And I keep promises.

And the first day I slept 6 hours, the next I slept 4.5, the next 4 hours, then three hours. The damn maps were off and the driving times we planned on were all wrong. There was (surprise!) rush hour in San Fran, in L.A., in San Diego, in empty highway. There was road construction. We pulled up at 1:00 am or 2:00 am and THEN I had to go to the bathroom, finished at 8:00 am, awake at 10:30 am. I almost went to the hospital three times to San Diego. An sane person would have. Except I knew we didn’t have the money and since I figured I would die anyway.... (maybe not a 'sane person').

I made it to the finish line, to opening night, for a few hours seeing steam punk and the sights, and then I wasn’t really human anymore, unable to move, to speak, out on the bathroom floor. For 12 hours, I didn’t know what ‘words’ were, I had nothing going mentally and couldn’t move, I couldn’t even moan my pain.

So a day in bed and when I went out the following day I used Indy and I went to see Moto Haigo, the mother of shojo and yaoi manga, who wrote about things in the 60’s and 70’s wrote about things which aren’t even talked about in the west today, 40 years later. One early manga series was about a young teen whose mother remarries and the step-father sexually abuses him in a brutal and systematic way, while the step father leaves his own son alone. The only way the teen can find a way out is to rig the car to kill the step-father, only to have his own mother in the car when it crashes. His step-brother doesn’t understand the mixture of grief and relief he has at the double funeral and hates him. That’s not an uncommon story, not when churches are giving out payments for tens of thousands of abuse cases, just not a story WE talk about.

Haigo showed a story, Lizard Girl about a woman who gives birth to a girl and to everyone else, the girl is a girl but to the mother, it is a hideous lizard. This was Haigo trying to understand why her mother was active in her disapproval of her career, her life, of her. That classic question of ‘Why? Why can’t they see me?” is answered in an elegent manga.

I went to the Yen Press panel, and found they are releasing another in depth historical manga by the creator of Emaa. I went and got a book signed by the author, for free: and given to me. They promoted Beautiful Darkness, a book on my book list by having the authors sign and give away copies. Score!

And due to crowding I was left in the sun waiting for a trolley for over 30 minutes, and ended up with heat exhaustion and a fever. That's the unknown for ya. We can't know until we go to look, and that's the risk and reward.
But I wasn’t afraid anymore. I had gone BOOM in the redwoods and this is part of what it looked like, and I laughed (and later cried). I went to a museum and had a seizure, I went to old Town San Diego, I went up and down in elevation and my lungs hurt, and I was passing out daily. I was stopping breathing when passed out. But I wasn’t terrified, I was doing. I was seeing.

I realized that for me, the great luxury is in doing. To experience something, to see flowers, or oceans, or forest, or cities, or shops would have bad experiences, and okay ones and occasionally great ones but they are all things I cannot get inside a room. I can’t talk to Nene Thomas inside my room. I can’t see antique original stagecoaches in my room. I could not eat at a mexican surf shop and restaurant in my room. And while I was hurt, emotionally and physically, I was reintroduced to....well, me, or the type of me I prefer: dream it and do it.

A year ago, I risked all to see lava. Now I might need to risk all to see a historical street, or to go window shopping or buy specialty tea, or get turned away as a homeland security threat at JPL (for asking security booth of Buck and Bob where the visitor center we were cleared to visit was located) for trying to get postcards. Just a tip Jet Propulsion Lab, the place where unmanned probes of spaces has info and images rendered: if you DON’T want people to know where you are due to SECURITY then you might not want signs directing us off the highway right to the entrance, and you might not want to fly a GIANT American flag larger than the building on top of it. Just a little security hint.

So do I want to get outside for a wheel and see the stores, or go for a picnic or do I want to live as long as I can?

I want both. But if I don’t get out of room, out of the comfort and fear zone, then I won’t get either life OR living. Winter will be here soon and then I really CAN’T go outside (I get frostbite indoors). I needed to get back in the game, that friction called living. And I wouldn’t have done that without Raccoon.

I could not have gone and keep going without a lot of people: every person who gave florestar, dishes, utensils, medications, in order to give me a baseline of a life. And every person who sent a letter or card that kept my spirits up, who sent stamps or postcards to keep me able to reach other to others, who sent manga, DVD's and gift certificates to allow me to engage in intellect, and for those times when I just need to sit, stare and recover. Because out for 4-5 hours and a day recovering is me living on the dangerous edge of going wild (my 4-5 hours is like your 48 hours without sleeping having a party!). So after 5 hours, even after sleeping staring at Sanctuary Season 2 and watching 'Sanctuary going to Comic-Con' extra makes me loopy and smile and go, "I'm here, they're here, we're all here!" (yeah, just in different years - just keep lying there space cadet girl!) Thank you each and every one who helped me in all those ways.

My promise to Raccoon and his to me of Comic-con got me jump started back into seeing, doing and being (him showing me how to get rid of that extra fluid, Indy style). Doing, being - I might have spent much of the travel experience in the van, might have never left it but once in Yosemite, but I was THERE.

The very thing I feared was the gift that Raccoon gave me: The unknown. Because it not only contains all things I fear, but all things I will fall in love with, all passions, all excitements and joys. And that I might not remember them for more than a couple days doesn’t matter, the habit of living and expecting more, both in life and from myself is an attitude I want to cultivate. I don't know what I can find, not until I try.
Thanks Raccoon.

Friday, August 06, 2010

Coming Home, going jogging/wheeling, running out of WATER? And some light reviews.

The BEST part about coming home is knowing where stuff is. Also all the things we looked for in our luggage for two weeks suddenly appear now that it is far too late to use them. Also I get to spread the giant piles of postcards in front of me (I should take pictures – postcards bought in national parks, postcards from small towns and museums, etc).

I hope this weekend to start sending out packages and postcards which I will continue for the long future. Well, as long as I can get funds on Amazon, selling off some of my books and CD's from 'pre-disability' life. I also might raise some funds with ebay: then I can send out more packages. If you are interested in Tea, you might want to let me know! And the type of tea. This is BIG hint to all the overseas readers as an ounce or two of tea is NOT EXPENSIVE to post (or not AS expensive as say, BOOKS), so if you are in OZ, or South America, or other places and you know someone (ME!) who just came from a speciality tea room where they spend WAY too much, you might want to let them know what kind of teas you drink....HINT! HINT!

I came back exhausted from our road trip but also, in my muscles in great shape (heart, lungs, blood pressure not so great, but arm muscles great - I even lost weight). The up side is that because of the wheeling around Comi-con, Redwoods, Yosemite, and several other locations, I am FIT, or able to wheel myself around. The bad(ish) news is that I still pass out, stop breathing every day. I have had a nose bleed for over a week and yesterday I passed out and fell down on the floor twice, once in the bathroom. Oh, and our Air conditioner is going. Plus the water filter we use for water needs filters which Linda put on the wishlist. Without those filters, the water makes me spend WAY too long in the bathroom (explosive!), and I have to drink 2-3 liters of it a day. It is the mundane like running out of ‘fish pills’ (I now have to take cod liver oil pills with every meal), and the amount of stuff I have to eat with my food rivals my grandparents who took just about every supplement imaginable – one plate for the food, one for the supplement pills.)

I highly recommend the mangaTwin Spica for 15 and up, which will be releasing volume 3 in a few weeks. The next six volumes are already printed of this tale of a tiny girl who is determined to go into space, but whose family is closely connected to the tragedy of ‘The Lion’, Japan’s last manned rocket which crashed into a populated area. She must keep her spirits up and her love of going into space in this tale told of her future as well as the story of the past which is both uplifting and heartbreaking. I was gifted the first two books thankfully. So now I and Linda and Cheryl have read and recommend them as well. We talked to the Editor of Vertical and they are determined to print the entire run in advance. This is one series they are releasing the next book every 8 weeks because they have them advance translated and printed. Also they have a very cute manga about a kitten call Chi, which is from the kitten's point of view. It sold out in hours both times they got more copies in at Comi-con. As did Black Jack, I have up to book 6, very good.

I am looking forward (no pun) to Fast Forward, a DVD set on the wishlist which has over 80 ratings, all five stars. I haven’t seen it but it is about everyone seeing six months into the future, and after that, I am a bit fuzzy on the plot. I kind of don't want to know because I want to get that buzz of watching something really good, without having read the entire plot first. The DVD sets will start being sent out in just over 2 weeks. Also Criminal Minds coming out soon, that will be cool. That is three weeks, finally after a long wait, the DVD’s have returned to nest!

Today, I was feeling better and not passing out so I decided my ‘cunning plan’. The idea is: I was in agony on the trip from all the wheeling, so I built up some muscles and am fit, likely. Also I turn red a lot when 'power wheeling', which indicates higher blood flow to my arms and chest. So I decided to go for a 90 minute wheel, where I ‘jogged’ wheeling, with Linda jogging to keep me company. We went out to the waterfront and did the 5K trail there, plus the add on, which goes down the BIG hill and back up again (you can see me doing my, ‘push 1, 2, 3, 4…” count up the hill to never stop the arms going). This MIGHT produce some agony later, which is where the watching riviting DVD's come in, along with the recovery days.

There is a section atop the bluffs with the water beside and often along blackberry bushes. The trail is seen as flat but as a wheelie knows, what SEEMS flat is often slanted and this was no exception, so one arm got a BIG workout. Then there is a section that dips and the trees close in all around,a trail which leads to ‘Mile 0’ the start of the Trans Canada Highway (I know, we are on an island so how can the Trans Canada Highway start HERE? Well, welcome to Canada, where paradox exists without irony). There is a statue of Terry Fox there, often with Japanese Tourists taking a picture of it. Then we double back, and then down the long mile to back home (after I go up the big hill to the apartment).

I sweated! – not entirely atop the head or the feet, which is a bummer as I will keep losing hair but the rest of my body got some sweating going on. This is a good thing. I am also still bleeding out of my nose, probably due to the high, high heart rates for long periods of time going up hills and such. The cunning plan realizes that I am in not as good a shape as I was in Hawaii. BUT, I can lose weight, and improve circulation….on the days when I am not taking a bed day. So like 2 bed days, then out and doing 5K. I need to rest, I also need to be as fit as I can be. If the seizures increase a lot, then I will cut back, and if I start bleeding out of more than four places I will cut back (of out of my eyes, because that would freak out the other runners).

Home is late nights where I look around the room I am likely to die in. That sucks. Linda is unemployed and still searching. That sucks. But home is also where I am going to keep writing, keep doing, keep reaching out to people, keep trying to make the best life for me, Linda, and all of my friends that I can. I will keep doing manga reviews, pictures of us getting out and reports from the front line of kicking life. I am still alive, or most of me is (EFM: Now 1/3 Zombie!) Sure, I went blind yesterday for a while, but the trick of living on the edge is doing the stuff and not always waiting to fall off.