Wednesday, November 28, 2012

Euthanasia: Don't worry, be happy.

I think it is important for a person or a group to anticipate or to look forward to something. Right now, I don’t have that. I’ve tried and failed, and tried and failed so often that I don’t know if I have it in me to hope for anything.

Maybe if it wasn’t so darn painful: my organs as well as my circulatory system stop functioning so often, I feel like I’m just the skin around the black pudding. Yum!

Right now, who decides when and how you die is being fought in the courts. A Victoria resident last year won in the Supreme Court the right for those in BC to choose when to die (after a year for implementation). She had the right as soon as she won the case.

Instead of getting ready for Euthanasia, the Province is suing their own judges. I don’t quite understand how that is legal, but then this IS British Columbia.

And while I am sure lots of disability groups are against it, because they use the same ‘slippery slope’ argument made against gay marriage – like how if someone with a terminal illness who uses a wheelchair has a right to consult with doctors and choose when to die, then they will allow all people with wheelchairs, or all people with disabilities, then all people with large birth defects to choose to die.

In the same way a same sex couple getting married does not mean that adult males and 10 year olds can marry or humans and barn animals; someone with ALS, or type 4 non-remission MS is quite different than SCI in terms of life span and progressive complexity of condition. And the assumption that doctors, the general public and individuals cannot tell or want to tell the difference is intelligence biase: the idea that you learned something the average person cannot, and thus must protect them against themselves.

Victoria is already sedating and killing thousands a year. There is, with the aging population, a overabundance of individuals with NO or not enough care being given to them. They are denied operations because they are high risk. A man in our building is waiting for his heart to die, as his congestive heart failure fills his legs each day with fluid. A bypass could eliminate that but he is deemed ‘too old.’ There are people in every apartment building on every street. There are 14 beds for all the palliative needs of 300,000 individuals. Which is why if the doctors or VIHA decide, a person is given TS (terminal sedation – put into a morphine coma, from which they will die in 5-10 days).

The question isn’t: are people going to be deliberately killed. It is: who should make that decision, an organization or an individual with a physician?

For anyone who wants to swap out for a couple days for some of the conditions: brain swelling, motor neuron death, many types of cancer beyond the stage 4 delay, me.

For those who advocate against Euthanasia, let me switch out, and you can have the body covered with chemical burns, a heart which won’t give a solid beat but for every 6-9 flutters, and a diaphragm that makes each breath painful. Could a diaphragm pacemaker help? Sure…if we had someone who knew how to put one in, or knew what one was.

As the local health authority says, regardless of living wills, they do no life preserving measures, at least in the home or caregiving facility. They financially need people to die. And the less they and hospitals can cover, the more people simply suffer. Unlike the US or UK, if you have no insurance, you get few drugs, and the specialist ones you may need are often not covered. The puff and sip wheelchair is not covered. A worker twice a day who doesn’t know how to shower, or hand bath you, or feed you comes, but 1 in 3 times, they are cancelled.

I have no desire to see thousands of people suffer to ensure someone locks off the top of a slippery slope argument. Late stage pain and body failure is brutal, viscous, degrading and dispiriting. The loss of any control while you feel, watch and experience major body functions melt around you is horrific.

I believe that TRUE advocates against Euthanasia would, morally, raise funds and spend time with the dying, in order to improve that quality of life. If instead the aim is to deal with the theoretical possibilties while ignoring the individual at hand they remind me of those who don’t give to starving individuals but quote: “Instead of giving a fish for one day, better to teach to fish, for a lifetime.” But they ignore the simple truth: The dead catch few fish (not that they volunteer time to teach others, just make the quote).

The way things are now, if I manage to life to next summer, we have no air cons which can cool enough. And I will suffer beyond imagination. Some days, I do anyway. It is such that if someone told me I would be tied up and someone would use a knife to carve on me, I would laugh and cry in relief, in joy. Being ripped apart on almost a cellular level goes far beyond any idea of pain I have experiences or known.

So, yeah, some days it sucks. A lot of days recently.

Saturday, November 24, 2012

Unique mental masturbation

At the age of four we all know that we are unique, but somehow, in the next decade or so, we forget.
Though my major complaint since age four remains the same: Libraries should not limit the amount of books I check out.

Veni, Vidi, ego victum YMCA! But after 160 minutes of exercise, the YMCA conquered me. Once the fever broke, all those sit ups and push ups meant I blurted noises like an injured Yak just reaching for the toilet paper.

'Perhaps', I thought to myself, flopping about the bed like a landed goldfish trying to reach a blanket, 'those last sets of fifty were….excessive?'

My paradigm is shattered: problems DO exist which cannot be solved with the Galaxy Quest quote “Never Give up! Never Surrender!”

I am off this weekend for human contact. The problem with living a mental life is the real starts to become less important than my habitual intellectual masturbation. “Dr. McClung? Dr. McClung?” The home care worker voice drifted in, “Are you okay? Can you move? Can you speak?”

“Sorry. I was making your name into anagrams.”  I continue to peer off into the puzzle room in my brain.
Definitely time for outside contact.

Thursday, November 22, 2012

Who decides the 'Normal' childhood?

"Surely a 11 year old girl is too young to act this way (survival and violence)." She paused, "My 12 year old is still into ponies." She gave me the ‘respond!’ look.

I was thinking, "What kind of FREAK childhood…Ponies? What did I want at 5, 7, 9, 11 and 13? FOOD. FOOD. Shelter. FOOD." I said something banal about child soldier and slums on trash heaps.

It was a radio interview on Zed and has bothered me since. I understood that Babel doesn’t end when you both speak English..

Before I went to school, the paper I drew and wrote on were company memos, notes, invoices scavenged from industrial garbage. We grew as much of the food in our yard as we could. For the rest there was oatmeal.

It wasn’t bad. It just was. When I was a teen, my father told people that we weren’t poor. Most of the time we had no vehicle, lived in a rural area and rummaged from garbage. I had to move away before I experienced buying clothes from a store. I told him what I remembered and asked, "What is poor then?"

"When you have nothing."

Clothes from charities, no meat, never full. Bliss was a pinch of cinnamon on the oatmeal.

The life I lived is what I assumed all life was like. Having no TV helped that belief. It was neither bad nor good, it simply was.

I never envied what I did not know existed. And I certainly cannot understand this child view of plenty as an adult. Perhaps in part I never grew up, perhaps in part I grew up quickly because it was the best choice. I cannot think of an age where I did not already have a spot in mind in case I needed to sleep outside. At nine I started storing things, making secret nests, burying money.

As I got older, we got a car. Sometimes the family slept in it.


Sunday, November 18, 2012

Brain work: HBO's Thiller Epitafios and Haikasoru's Belka (& the WWII Aleutian Campaign)

I overslept an hour, perhaps all those waking-but-frozen body nightmares tire me. That kind of nightmares/non-sleep is mindtrap hell. To lie semi-conscious and focusing everything mentally to try to move an arm, a little finger, or to just scream, in what seems an enternity, is a mind draped in terror. I've been awake but unable to move, and that sucks, but to be trying to claw out of a dream state in a body that will not respond, not even a whimper when I'm screaming inside, that's horror.

There is no work like brain work. And speaking of horror, the best way to reboot a brain is to feed it, which is why in the last few days I’ve watched an Argentine award winning show Epitafiosin Spanish. Part of HBO Latino (partnered with Disney), Epitafios first season is about a serial killer who abducts people, buries them alive with a ‘epitaph’ grave marker, indicating who will be snatched next (a mind game for viewers and police).

 Add Martina, a cop who plays Russian Roulette for cash to get an insight into her dead father (and is a lesbian in a relationship with the case psychologist), plus a story line and actions of creepy that makes the film Se7en look like a kids show. Highly recommended.
It helped with my spanish, too. I try to learn languages with each show/film. The Killing taught me a lot of Danish, though not sure how useful it will be (Killing Season 3 out in a month - and for those who like Nordic Noir, try the Swedish/Danish series, The Bridge). I also re-watched some BBC ‘bests’ including Luther and Sherlock, who Linda agrees has fun making Watson and Sherlock into a couple. Probably the reason the US imitation Elementary had to turn Watson into a woman. Why? Because there are no gay couples in America. Silly, it is what 50% of Americans refuse to know.

Belka, Why Don't You Bark?is what I have been reading today.
 I try for a book a day. It takes me longer than two hours to finish a book after all the strokes, but not by that much (as long as I keep reading). Like most of the Haikasoru (High Castle) series of the best Japanese cult and speculative fiction translated and published by Viz, it defies description.

Belka starts with the facts: about the Japanese invasion of the Alusian Islands, from Japan's view. It tells how Attu was invaded by the US in May 1943 by a force of 11,000 US troops against 2,850 Japanese. The US suffered significant casualties: 550 killed, 1148 wounded, 2,100+ disease and exposure plus 220 aircraft and three warships lost.

The Japanese ended with a Banzai charge that Japan claims killed all Japanese, the US claim killed all but 29. The second island, Kiska, had twice the Japanese, but a rescue was sent.
Long range subs (including the one who torpedoed a ship leaving Victoria, BC – sub I-25, I-27) took the wounded, and a rescue boat took the troops during a fog bank. The allied continued for weeks to bomb and shell Kiska, an island the size of Tokyo, which had only four dogs left on it. Then 35,000 Allied troops including 5,500 Canadians invaded. The book tracks the four dogs, and talks about the military use of dogs, including which countries started first, the numbers used and how. One of the Japanese military dogs was a ‘taster’, which was trained to find edible plants, and helped the Japanese troops avoid scurvy while in Alaska. One of the four dogs stayed in Alaska and ended as a sled dog, a lead on a winning team whose pups went for hundreds of dollars. One of these pups was sold to a guy who decided to breed it with a wolf (tied to a tree and left to mate), to make the best team, which he then tried to take to the Arctic Ocean and back.

The book, Belka, is engaging, brutal, direct and funny:

The attempt to the arctic circle went horribly wrong.
“..These four dogs lay in a circle around their master’s corpse. They couldn’t have run away if they wanted to – they were still tied to the harness. They survived for four days on their master’s flesh.

And then they were saved.

They were hunters, members of one of the tribes of the Arctic nations that would later come to be known collectively as the Inuit. …dogs were still their only means of transport. They could see what had happened. Some stupid white guy had died. An adventurer who fell victim to his own incompetence. Leaving the dogs behind. Four of them!

I try to read all the Haikasoru line, though the are released months apart. Hiroshi Sakurazaka is a favorite author, writing, All You Need Is Kill is a Science Fiction book to surpass Stormship Troopers.
 He also wrote Slum Online, a representation of the secrets and puzzles in both human interaction and virtual environments; this co-view is the experiences of those born in the last 30-40 years. I favor the writer Project Itoh, writing from hospital while fighting cancer (died 2009): his book, Harmonyis about the medical overmind, which surpass governments, individuals and free will in determining the best choices become the only choices and societies end up talking about ‘workouts’, ‘oxidants’ and ‘heart plaque’ instead of social change or personal interaction.

Work the brain, work the body. I am trying to get to the Y to tone up, now that my kidneys worked for five days. I focus on a goal and keep trying until I make it. Exercise makes me feel better about myself and gives me back an iota of control in a situation with little to no control. I didn’t make it today, but I will try again tomorrow, then work on going out to a movie, hopefully Tuesday or Wednesday.

As the book Harmony says: In a perfect world, there is no escape.

Friday, November 16, 2012

It's Epic

I have so much to say, but so little capacity right now physically.  I am full a brim with thinking that it leaves me empty. 

I wanted to write every day of November.  Then I had kidney problems.  It didn't seem that blogging was as important as kidney function, or dying. 

I can't take the big risks I took in the summer, where I went to the brink of heat stoke, over and back.  I have to learn how to heal.  And how to sleep without my tongue splitting like a split lip from the dry. 

I never wanted to stay in one place.   I never wanted anything but to work and travel.  

Wednesday, November 07, 2012

Re-election 2012: Lincoln re-elected!

The news of the Election results is that all that is now, will continue to be. There seemed no point talking before, as there was a several Billion dollar election. Sorry Florida, now you know how British Columbia feels (all those years the election was called on TV before we had even finished voting).

Yes, some bitter irony that it only took 140+ years to reach that 'equality for all' (not that Canada or BC is better, BC stopped ethnic minorities voting until the 1950's).

I think the rest of the world sighs relief with President Obama, and now the East Coast can get back to rebuilding. 

Friday, November 02, 2012

Why 23 postcards matter: Or is the Joke on me?

I sent five postcards to people who I don’t know at all: email requests. Eight postcards were posted to people I haven’t heard from in a long time. One postcard to ask someone I haven't heard from this year how they are.  Seven postcards to friends, people met only online through Screw Bronze.  And two postcards mailed to individuals who lifted me up with the postcards they sent, a message to hold onto through the pain, muscle degeneration, and fatigue.  Postcards I hold while suffering.  23 postcards sent on Monday.
Some of the postcards are from a book I can’t replace, another from Sakura-con two years ago, and others from Japan. Some of the postcards are from a book I can’t replace, another from Sakura-con two years ago, and others from Japan.

The stickers for decoration I had bought at fairs and collected over the last 18 months.  The stamping was finding some Halloween themed stamps.  It was fun; Painful in the doing and recovery, but fun!  I sent postcards I would have loved to arrive in the post.  The message: I value you as precious.

It took me about 25 minutes each postcard to make, decorate and write. Time well spent. Does it help to know I laughed and smiled while decorating?
The last few years have been hard, for almost everyone I know. People lost jobs, homes. We are only now able to hold even, with no savings, and scared. I am weak, and often cannot lift or move even my head. I just lost 24 hours, going to bed and thinking I was getting up in 8 hours, I lost a day. Only, so weak, unable to move, with the fan blowing on me to cool me, I have had my tongue split apart like chapped lips. In the center, inches long, my tongue split because my body is too weak to make saliva, and too weak to turn my head.

So, to spend the energy, to find and search for the best could be a huge joke on me. 95% of the messages I send out, I will never hear back. Which means, using the limited funds, resources and energy to spend 25 minutes on someone I will never hear from again could be seen as foolish.

I want whoever gets a postcard, and they are sent: five one week, three another, ten the following week, and now 23 postcards, to people who I hope understand, that I care about them.  Yes, I am in pain and I am afraid, but I act anyway.  Because when all that comes into a life are bills and notices and junk mail then getting something that says, ‘I like you, how are things?’ will matter.

If it doesn’t matter, then I am a fool. The joke is on me because a few thousand postcards in a sea of hundreds of millions who are isolated, alone.  Or with social messaging, I am a redundant act from decades ago.  I have dedicated myself to tilting at giants, like isolation, depression, companionship, and human connection.

I will keep sending, and I’ll reach 7,000 postcards sent soon enough, if I live long enough. There is still beauty. I want to share that. If you want a postcard, email me, and when I am not ill, I will send you one. I can’t do much, but I can do that – though it takes the hands of many friends to help me.