Friday, May 27, 2011

Would rather be out wheeling

Have been busy dealing with medical issues, will post again as soon as it is possible.

Monday, May 23, 2011

Beth's Birthday Bubbles, Linda's Layoff and Fernwood Flowers

The one constant in life is CHANGE! Change happens, and oft without permission, irritating that, no? Last 8 days I experienced two diaphragm failures, and internal organ shut downs, otherwise known as ‘dying’ (or the start of the ‘organ cascade’ where the body is so weak that the different organs and systems shut down, one after another until there is only the heart and lungs and brain left). You may or may not know, my heart is in constant electrical failure, where there are thousands of erratics each day, including chambers not working, valves leaking, valves leaking backward, and the two lower chambers not beating at all. Nothing can be done about this except mask the pain with painkillers and try not to get too weak, as thankfully the aorta overcompensates by doing superbeats which move the blood even though half the heart has stopped working.

I also take the highest dose of neural pain blocker because if I don’t in 30-36 hours, the drug wears out and the nerves make the muscle spasm, like when you are woken by your leg going into spasm (usually with a scream). Only for me, I have dozens of spasms like that just on a forearm, and hundreds to thousands on my body which makes it so I scream until my vocal cords are stripped and the screaming produces no noise. This is…..unpleasant, and happened twice in the last 8-9 days as the constant emergencies and sleep made day and night mixed up along with the pills.

When the last full body emergency seemed dealt with, and I had rested for a day, I decided that the whole dying had taken way too much of my time and I wanted to see this ‘outside’ that people kept talking about. Friday I had my preplanned escape and the worker helped me dress and get out the door.

The joy of living in Fernwood is that it is the old style mix which we like to think a city should be: old trees with branches meeting atop the street, large green space for kids to set up lemonade stands (seen on weekends near garage sales), and house ranging from Victorian and Edwardian to the smaller 1940’s houses build on the $2000 sailors and solders got after WWII, and the larger 1950’s houses, after a decade of employment and growth. Even weakened, I am able to see all this by wheeling only a block or two in any direction, including two micro parks and a 1950’s aging movie star style ground floor apartment complex. Wheeling along one street, each of the houses are distinctive with colour and character, each one unique. It is a good neighborhood to wheel around.

Summer had arrived or at least started while I was in the hospital bed, and the birds were busy in the trees (what birds are these?). And the gardens had started to come up. This garden with the mix of flowers and colour along with a tree at the end often seen in Japan (the name of the red tree anyone?), cheered me up as I wheeled a block, peering at houses and gardens. I arrived at the local grocery store corner store which happens to be the best flower stop in town.

Linda often gets flowers for me to sit by the computer so though I can’t see out (yes, construction still going, after 38 months) I can see nature. I had my emergency money with me (in case I need to take a taxi home from the hospital if I pass out while wheeling and end up in ER) and bought Linda some Lilies in a pot to give to Linda to celebrate her getting a FULL TIME JOB! We have a north facing apartment and she has a north facing office, and the lilies need bright but no sun, cool and watered. Well, an apartment that has air conditioners on all the time or her job for the city government both fit the bill. Here are her lilies before she takes them into work along with a bouquet of mixed flowers I got for my birthday. Behind the flowers you can see the original Jason Hunt killer whale carving (his uncle did the carving for the queen’s baton for the Olympics, his grandfather did the Beacon Hill totem pole and he carved for the BC Royal Museum), Linda’s previous birthday present (from readers of Screw Bronze and myself).

For my birthday I got an Emily the Strange football t-shirt, with the lucky number 13 on the back.That night, I did emergency exercise for an extended time (an hour plus) until I was dripping sweat, in hopes of getting my body systems stable. The downside is that a) I am in a lot of pain for several days and b) the body retains water and I swell up as my tissues are so fragile now that I tear them doing anything and until I heal, I bloat (ug! Avoid mirrors).

The next day was my party, which started late due to my recovering from the illness and exercise. But I had a good time, and I hope all those who came did as well. Here I am getting my Birthday Cake (red from talking too much and overheating), and wearing a very cool sleep-shirt,showing a cute furry gal holding her plushie, a gift converted into a fav sleep-shirt. I got gifts, cake and messages from lots of great people who wished me happy birthday including a email with a personal recording for my birthday. I can see why people keep this birthday tradition, it isn’t bad at all.

I had been given a bubble wand and after a rest and lunch, I went out and tried it. With a bit of practice I managed to cover much of our building with bubbles, including a few which wandered into second and third floor apartments (as the tenants had the balcony doors wide open during the hockey game). I got a few ‘Wha the?’ faces coming to the window to find out why bubbles were floating by or in. This is me FOCUSED on the bubble making, not complete stoned out of my mind, which is what my facial expression looks like.
Linda was so envious that she wanted to try it, so she got into her ‘action stance’ and started pumping out the bubble. She was quite efficient and concentrating on making more and more bubbles that I had to remind her that this was ‘FUN’ too. She relaxed a little, which got her casual and smiling. It was good afternoon fun.

I also spent an hour or two writing postcards, as I have been able to send postcards again, with a lot of help from Linda and Cheryl, and though it is usually 16 to 35 every two weeks. I am glad to be able to send cheer and return messages to postcards, letters and emails but we are able to try out all the cool new rubber stamps we bought at the sale in April. Postcards shown are from two weeks ago, so it doesn’t ruin the surprise. I know that with my health looking grim for weeks to months, and between emergencies and trips into hospital, doing the five steps for each postcard and the time and energy that takes may seem foolish, as I often lose Monday in recovery from the weekend work on postcards. But as I have a limited time left, and less and less that isn’t just survival, I choose to be friends, to send to friends, to try and be there for people as much as I still can.

The good news of the full time job has been offset by having to wait that while for the first paycheck, which we are still waiting (before rent, I hope!). So while she is working and has new costs, we are still struggling. The job will take care of medications and rent, but the backlog of a year of supplies and things broken down from getting wireless back on the laptop to the urgent need for a NEW upright fan were coming from her weekend and evening job at the heritage building, she was getting great hourly pay, just few hours, but enough to start buying the 15 months of supplies we put on the 'when we get a job' list. Thursday, when she was soon to go into work, she got a call, a sad one from the boss at the heritage society where she already has friends. It seems that though her new job is a 1 year temp position, it is part of the same union as the heritage society has. And even though, as a 'temp', she doesn't get medical coverage, or other 'union' benefits someone at the union decided that if she works on weekends for the heritage society, that would count as 'overtime' since she has a full time job within the union already, and the union doesn't authorize temp overtime. The conclusion: because she was the number one pick for a job 400 people applied for, she lost the part time job which she also was the number one pick.

I asked her, "Do you think we will ever have one of those phone calls were something GOOD happens?"

We gave each other the limp smiles of too long fighting for things only to find yet another 'rule' or something which ends up taking away part of the success we fought for and thought we won (like how our medicare refund at the end of the year was.....$0, because the two most expensive pills were 'disallowed' even though they are both pain pills and there is no other pill which works. We had been told, "Don't worry, it is hard now, but you will get the money back at the end of the year....." Sorry Linda, I know you enjoyed that job.

Sadly, we still will need an upright fan desperately.One of ours broke off the base but we still use it, propped up. All of the fans are 2-3 years old and running on some miracle power, but all three are about as powerful as one new one. We need the fans because 1) if I don’t have a fan blow the air in a specific flow which cools my head, then flows down my body to keep that cool, I over heat (and have strokes in my sleep as my blood pressure goes up while the weaker veins from previous bleeds in the brain leak blood causing another stroke. I can and have gone into heat exhaustion or stroke while sleeping. And 2) if I don’t go that bad, if my head is heated, it overheats a nerve cluster atop the neck which leaves me paralyzed). The fans help up move the air from the air conditioners directly to cool my head and torso Ergo, with summer coming, we will need a new fan, likely two. The Florastor, which was kindly gifted to me, is almost gone, part-way through our last bottle. Florastor, recommended by doctors for those on cipro or without intestinal flora (like me), is the only thing that lets me absorb nutruits at all from my food, which not only includes calories but the B, D, and other critical vitamins (B is what I need to slow the brain damage as B-12 is converted into the coating for nerves to do electrical transmissions, and I am constantly fighting to keep that at the MINIMUM standard. Lower than that, the body ends up destroying nerves in order to have and use this element). So yes, though bought at a drug store, it is very important to living beyond a few weeks.

Linda told me she put what she needs on the Amazon Wish List. This includes the ice cubes to cool the five ‘core’ heat areas of the body and to cool the body inside quickly if I am overheating by giving me drinks as cold as possible. However, she got distracted and obsessed with these ‘brain ice cubes’ which she told me are ‘soo cute’ and ‘cool’ – I can’t tell if this is my goth habits rubbing off on her or her interest in the body. She has as bathrom reading books on body functions, and enlargements of things I don’t want to look at as being in ME while I am going to the bathroom. Maybe she is one of those people who can watch an operation going on while eating dinner, or watch a show on ‘bug in our floors and walls’ while snacking, I don’t know.

Thank you for the gifts of DVD’s/TV shows as both during the two days of pain of doing the ‘sweat exercise’ once a week (missed for almost three weeks due to very ill health) and after surviving lung, heart, bladder, kidney, or other organ failures, I can but sit there, and this helps distract from the dizzy, nausea, and extreme weakness. Thank you for the kindess of this, as I sometimes have very little too look forward to for several days but knowing that ‘if I survive tonight, and sleep for most of tomorrow, when I get up, if I can get help getting set up, I can lie here and watch xxxxxx (insert TV show/film here).”

So hurrah for birthdays, and for flowers in the Fernwood area. Thanks for the fun and also extremely useful gifts like Popcorn (that’s useful and FUN! And it goes with the TV shows). Also a double hurray because I am still at home: until late last night/early this morning, a five day ongoing degeneration meant that I was going to have to go into hospital this morning if my body didn’t start up again….and it did, just at the deadline – so I am very, very happy that I am not in the hospital today. And I made bubbles.

Thursday, May 19, 2011

Sucky day, a very happy un-birthday to me, and you

Sucky (birth)day extreme! Last night with cramps on toilet, but found that intestines were filling my colon (guess what I had to do to determine THAT - double ick!), and have to NOT do the deed for a while and hope it stops that. Many hours of moaning and cramps then sleeping for 12 hours, then finally able to pee a little, and then one of the breakthrough pills forgotten as well as my nerve pills and my entire body went into individual muscle spasm which grew and grew until I started screaming because I couldn’t not scream anymore. My jaws were hitting each other from spasms too. It all kinda sucked, even AFTER I took the pills there was that time of waiting, waiting, waiting for pills to kick in.

Of COURE time is relative and not consistent. Who needs Einstein and going around the sun at near the speed of light to tell you that: Anyone with chronic pain can tell you time isn't constant. The time when trying to sleep and the pain is there and stupid things like hair hitting my eyelid HURTS for some reason and I have to move it, that is SLOW time. But the slowest time of all is finally getting the pain meds down and being told, “Don’t worry, they should kick in within 20 minutes” That is a very long 20 minutes.
But from acid tongued hag to jokester when the pain eases, Linda came for the milk and asked me for my jug. “There is one on each side, so just reach over and squeeze your choice.” I told her. This was moments ago. During the pain time, I would have opened my mouth and like a dragon, napalm would have emerged earlier.

So birthing day SUCKS. Though I guess if the purpose is to replicate the pain of birthing, I was supposed to have been 45 minutes (induced) so no, I had WAY longer pain than that, I was 10 or more hours starting from last night. But hey, another hour and a very happy un-birthday to me, to me, a very happy un-birthday to me (sorry, the song is stuck in my head).

I will try, try again. I’m still alive, and hopefully, with a bit of boxing to hasten healing, my colon and intestines will start doing their job and stop trying to go on strike (never should of let them unionize). We go up from here.

Wednesday, May 18, 2011

Hurt and Love: a Birthday, Cancer and Lance Armstrong

With lots of systems to fail, my body seems often like an old clunker car: I spend more time in the shop (unconscious) than on the road. But, it is what I have and let’s go with that.

I am celebrating my birthday as and when I can, since right now, I follow the disease and it tells me when to sleep and wake and stuff like that, not the other way around. But I hope to get to a system of waking and sleeping that is stable. In short, I hope for a remission. It is kind of hard to tell if I am going 'downhill' when I have an emergency every other day. And while pain is never boring, constant random emergencies get 'tiresome' and then I end up playing the 'what if' game later (You know, 'what if I could have prevented that?', 'What if I hadn't gotten up a hour early to do postcards', etc).

Being ill: the past several years of my life are not what I would have chosen but are years, experiences and interactions which have given me gifts of understanding. I understand things that I was too dense to perceive other ways. Experience is a hard teacher, even when you WANT to learn. And against popular belief, there are still many for whom experience teaches little (this would be the time for personal introspection on actions and habits repeated when a) knowing the outcome and b) promising self it would not happen again).

Until lately, I never understood all the sacrifices that caregivers make, or those who help and support those who are chronically ill. Now I do. Seeing how hard it is, and how much of a full time wake till sleep job it is, but also learning how Chronic illness can be that way too. Sure, I visited more than most, or did ‘acts of kindness’ but I wasn’t THERE, I didn’t step up and commit the way Linda, Cheryl and others have for me. And while I had Chronic illnesses, since I hid them, and 'passed', I figured that most did the same and that is what Chronic illness was like. Learning the dozens of different impairments, chronic illnesses and how something like IBS can threaten work, social life, personal comfort, mental health and so much more taught me that while I can't walk/wheel in someone else's shoes, I can try and understand and appreciate what it is like to have to do that.

I'm supposed to say I've lived a life without regrets. Which always seemed to me to be an admission that I am too dumb to figure out that I always have more to learn. And becoming Impaired, Chronically and then Degeneratively ill has show me that when it comes to knowing that I don't know, there are grand canyons of personal ignorance I am now aware of. I do have regrets in my life, things I would do over. One of these is that I should have done more. I have tried to change that, as was possible, to be a person who was there and aware, as much as I could, over the last few years. But having a degenerating illness is very distracting to the best of intentions. And I think that is why I sacrificed so much physically for the sending postcards and gifts: because love needed to be tangible, as long as that was humanly possible. Hoping that someone out there thinks about you, and KNOWING because you have the evidence in your hand are very different things. Still, I was not and have not been there all the times I wanted to be. I apologize.

This reminds me, if you have sent a gift (for my birthday), please make sure to let me know who you are (you anon’s too!) and when your birthday comes around. Even if you have done it a previous year, can you try again and remind me, so I can try to get a fresh start on that. Because with a name and birthday, I can at the very least get to writing some thank you notes, and hopefully through scrape and slide, send out gifts till the autumn (I have a calendar already prepared for names and dates).

While my life is solitary, and my memory a bit like having every day put in the blender on 'frappe' (I might have bits of it, but often not the parts I want).
I still think, and watching good films helps that, good series too. I get some from the UK, from, and one advantage of frontal lobe damage is everything isn't just surround sound, it is as if I live it, and I dream of it that night too. So getting good films (like The City of Life and Death, the Chinese film on the rape of Nanking I watched yesterday, then went and read for an hour or two on details I noticed) they help me open up mental pathways, and connect language centers, which slows dementia, and aids thinking. And I think we can all agree that the world needs more thinking in it, because that is part of what makes the world and all the points of view in it so very interesting. Did you know that a book read I can remember longer than a conversation, and a good mentally stimulating movie I remember longer than a bad and cliche' one (though those are good for the days I am 'half there').

So in this thinking, I've had two thoughts. 1) I think 'being there' changes a person, for the better, if they let it. While it isn't always pleasant, and often comes with grief and introspection, when you are THERE, as a friend, or relative, seeing someone daily, nightly, weekly, regularly who has a disease, chronic illness or terminal illness it makes you what we used to call, 'centered' or 'world wise'. To see and be with someone you care about during good times, bad times, and the very, very bad times, all those experiences rushing at you and having to reach past yourself to be there for them, to 'think like (fill in the name' in order to comfort them, it makes you deeper, more able to handle the little annoyances (or less, if you have been up all night getting pills and comfort and just holding a hand with someone).

People don't like change, and often fear it. But I think it will make you stronger, and more sure, because you realize how little you know, how panicked you became in this or that situation during care giving, and yet, you came out the other side. And like how a bad patch in a relationship you fight for takes away that fear that the connection might disappear, so this gives you the knowledge that you are stronger than you thought you might be.

Also, surviving those hard times as a person with a chronic illness or life shortening illness also lets you know how great it feels to have days where you don't worry about being too weak to breathe if you fall asleep. As for me, I've accept as normal life a level far below what I thought was humanly possible, or requiring so much assistance, I used to pity those like me now. Shame on me. Don't pity me, but get to know me first, then you can feel what you want, because you will actually 'see' me, and I you (not just some tragic story told for various reasons).

I'm looking forward for the paperwork and visits for the palliative program to be done. The program sounds just what Linda and I really need right now. It is here because of cancer. That is where the volunteers and staff learned about pain, and how disease looks different with each person, and so the needs are different too. I will owe the thousands of people before me. They were the ones who shaped the palliative program by using it and trained the staff by showing what did and didn't work.

2) We all have a past. People focus so much on the future, and I do too that I forget and assume that the present is all there is. But reading and watching and thinking, something I realize as a writer and a person during this disease process. We may not know our future but we all have a past. I met someone this week who did the 60 km challenge for cancer in Vancouver (because I don’t think Victoria has one). She had cancer, and because of that, she knew what her friend needed when her friend had cancer. Because of her past, she did the 60 km challenge. Her past gave her insight, and motivation and made her a better friend.

Cancer is a disease which make a person feel helpless. The lump they find, or the cyst, or whatever it is they test, just them saying it makes me feel helpless. The waiting to find out makes me feel helpless. Much less finding out your own body cells are changing, and destroying you, that is frustrating and helpless. Cancer gives bad choices, where the 'best' choice is to cut parts of you off, or to be willing take what we are warned our whole life to avoid. Those radiation signs, those toxic signs which are put up as a warning we now have as part of our schedule. They put on a tattoo so they can hit the body with radiation, enough to kill right down to the very cells. Or, they come out with special gloves, carrying a bag of liquid so toxic, they measure it out in drops: Chemo. People use the word like it is just a word, but the smell of it causes many to start vomiting, just in the body memory of what is to come, for many others, the night before is sleepless. You learn to cry and scream in the parking lot, to cry and tell them to do it anyway, becuase while you know these chemicals can kill you, and might, they also might kill those cancer cells first. But it weakens you, and changes you, leaving you fatigued (fatigue, I was told, was when a fire alarm goes off and you are too tired to move - I know that feeling) at best. It gives you tremors, and neuropathy, makes the bones soft, or eats through them, you get thin, and your hair falls out, and eyebrows, and arm hair and sometimes fingernails too, or they stop growing. It is like you are dead, but not dead. We do all this, because living is better than dying, but it sure leaves people feeling helpless, because in the end, the cancer may STILL not die, not enough, and you will die instead.

Lance Armstrong, is perhaps the greatest cyclist who ever lived, certainly the most determined. He is the Winner of the Triple Crown twice, a ride in the Olympics and two arms full of trophies before winning the Tour de France seven times in a row, a record which will likely stand for decades. He is also a man with a past. In 1996 he was diagnosed with testicular cancer which had spread to his brain and lungs.

Lance had operations, chemo, and more operations including on his brain which removed necrosis (dead tissue) and cancer. In 1998 he went into remission and went back to cycling. Two years, 600+ days where there was no end to the tunnel of pain, chemo, operations, specialist, tests, treatments and side effects. But he came out the other side. And then he started to rebuild his body. He spent two years, with a cycle machine and breathing regulator to increase his maximum heart-rate, something considered medically impossible. And from 1999 up to and including 2005 he won the Tour de France, the most grueling and famous of cycle races. Everyone has a past.

In 1997 he founded Lance Armstrong Foundation for Cancer, and in 2006 he ran his first marathon, the NYC marathon, He wanted to run under 3 hours, the qualifying time to run the Boston Marathon. With a pace team, he was still above an average needed to make the three hours for the 26.2 miles when he was at mile marker 21. He said later that compared to the Tour de France, the marathon was “without a doubt the hardest physical thing I have ever done.” Using the television camera that were always watching him in order to motivate him through, to never slow, he pushed the last five miles and finished at 2:59:36. He made it, qualified for the Boston Marathon by 24 seconds and went on to run that too. Lance's finish in NYC raised $600,000 for LiveStrong, the Nike assisted yellow braclet campaign for fundraising for cancer.

On July 23-24 this year Laura Anderson is going to make the 60km walk for women’s cancer. Her page which outlines why she is doing it here. 60km is no small distance. I remember hiking, every day for 8-12 hours, and how after a month, I was really, really happy. Why? Because though I had lost all my toenails, and 20-30 lbs of wieght, I had finally gone father than a car could drive in 12 hours. I think we forget how hard things are sometimes, until we try. 60km is a hard walk. Laura has a lot of training done and a lot of training ahead of her. And it will hurt. And the day after will hurt, and the day after that.

I think the distance, about a marathon and a half (remember, Lance went from his Tour De France training and then trained UP for his marathon – most people train months for a 10K) is supposed to be hard. It is supposed to hurt, because Cancer is big and disruptive and takes determination, dedication and loved ones to get through. The 60km reminds people of that, reminds us what our friends, our family, our loved ones went through during those months, or years with Cancer. Laura is working now to get ready to hurt so people are educated on Cancer, and money is raised for treatment, for early detection machines. I recommend helping her.

I used to run marathons, to run all the time, for several years, the entire time I was first seeing Linda it was running here, round and round the track, and running round my routes and home again. Eventually Linda ran too, and the 10K in Cardiff and the 5K for breast cancer. I know that there are people who want to push things are hard as it is possible, and the majority who do not. I think it is not typical to want to swim or run until you want to vomit, or just lay down, and do that every day. I applaud those who do the 60 km walk, because it is done out of love, a love that is willing to suffer.

I push myself because it is who I am, and when I was 8 or 9, I wanted to know how far a mile was in distance around our house, because my parents wouldn’t let me run around the barrio of LA. And so I would run around and around and around the house, hundreds of times, as a kid, so I could run two or three miles. That was just who I was.

I showed the clip below to my care-worker today, and told her, “I like when they show the parts which are real.” She liked it because of that too, but wondered why people did that. You push yourself hard because something drives you, compels to compete, even with your own expectations. And also because unless you are willing to feel like that, to risk hurting and losing, or hurting so bad, pushing so bad, just to try harder, then competitive sports isn’t for you. But also, none of us know what we are capable of, until we have to. Some illness' are like a race that can never be won, but always be run.

Pain isn’t failure, and losing isn't failure, and quiting isn't, because we can always get up, or decide today to start anew. Only if you don't ever try do you fail. Think about this, the guy who throws up, the threw up twice more that marathon....but he also won it.
Don't count me out of the race either.

Saturday, May 14, 2011

Documentary Reviews: 'Art and Copy' and 'How Weed Won the West'

Though I have had to sit very still, like the children of Isreal, waiting for the death angel to pass by, I have been able to see some films, thanks to a trip over a week ago to Pic-a-Flic, and the library delivering some book several weeks ago. I got a couple documentaries from a list I had made of highly rated ones.

The documentary, Art & Copyis about the change in advertising between what are shown in Mad Men, the advertising account executives who wore the suits and were about ‘getting away’ with stuff and snowing the client and the move to the Creative department.
The word ‘creative’ used to be a punishment in the Ad world and if you were bad, they moved you from NY, or Chicago, and if you were really bad, you ended up in San Francisco as the ‘Creative Head’ (San Francisco is now one of the centers for the four major companies that make 80% of the ads for the US). Those people in the Creative Department had quite a few women and they were the ones who created ads in the 60’s for many big launches. The film talks to the heads of the Creative Departments: for example, the man who first put the writer and the photo person in the SAME ROOM and told them to make the ad TOGETHER. It had never been done, and what happened was a series of ads for Volkswagen, which was a small car, only 15 years after the war, which went from being a ‘why buy that’ to the status of cool, due to a series of ads.

It was fun watching the creative departments (which are now mostly what the ad agencies are) and see them talk about campaigns like, ‘Where’s the Beef’ (told to pull it a week before due to ‘bad polling’, they ran it anyway), ‘Got Milk’ which was to advertise California Milk because no one knows what brand milk they drink, and milk consumption was going down 4% every single year. So they convinced the client to simply advertise and ask, ‘Do you have enough milk?’ or ‘Got Milk’ (which the co-partner hated, complaining it was not grammatically correct – while he was talking about that, they scrolled through the pages and pictures of hundreds of rip-offs of that phrase).

The heads of agencies showed the environments, and how they have punching bags or basketball courts, but also said, ‘At 3:00 am, the lights are still on, this is a place where people love the work and want to finish the work.’ You get to see some of the I-pod ads being made (which were created by a mistake; they brought in a salsa dance instructor to give them ideas on how to use beats. While they were filming the guy talking, he started dancing with his partner to demonstrate. The ad for i-pod was the footage of the dancer put into a black outline with a vivid colour background). And we get to follow around a guy who changes billboards (13 minutes to change one), a four generation bill-board worker, whose grandfather and great-grandfather were never out of work, even in the great depression. It literally shows the movement from 'what is the Truth of this product' to the creative team, to the ad, to the billboards rolled and stacked for each city to the guy who puts them up and then moves them to different locations around the city. The documentary also briefly showed how the ‘great’ artists, like Mucha, in Paris are now famous artists for the creation of advertising boards. But how originally they were just trying to convince people to come see a show, or buy soap.

One creative dept head said that the environment was relaxed because “To be Creative you need to feel secure in order to take risks.” While another pointed out that it was a brutal business, where a person was rejected over and over, ideas shot down all along the way, and needed people and a place where you could fall flat on your face in failure every day, and still get back up. While I wrote down while watching it, “Lee Clow:apply to work there!” as it seemed like my life was directed to ads. And all talked about how the ads which all are classics, and launched companies to fame are all ones where the company said, “No way!”

One comment was about committees and rang true, this idea where you come in and the person says, “hmmm…interesting.” before handing it to someone and saying, “Lets test this (with groups of people) to see if I like it.” Ha.

So, yes, a high recommendation on the film, and to finish with an ad campaign everyone knows, Nike’s ‘Just Do it!” which everyone knows. Except most don’t know that the phrase came due to the Creative ad guy seeing that phrase in a newspaper about an Arizona execution by firing squad, where there was a delay and the prisoner said, “Just do it!” Interesting because there the phrase is about it being OVER, while people took the phrase as it being an open reminder to do more, to push mental boundaries. There were interviews of people, and what they did from seeing the Nike ad, one guy asked a girl to a dance, another started a hobby, another started a new sport. The creative person for the ad talked about getting letters from dozens of women saying, “You’re right, I left the bum” and she said back then she was thinking, “People are getting divorced over a shoe ad? What have we done!”

In 1995, Nike created an ad, which I remember, which Linda remembers, which I think every woman who saw it remembers, it is the female shared experience. It is our voice.

Nike actually brought IN jogging, as it was so unknown at the time they started, and then early on, did print ads of the two women in the Creative department talking about what it was to be a woman, a mother, and how she didn’t want to be like her mother, but what she wanted for her daughter, printed with a photo of her as a child with her OWN mother. It articulated for women the social pressure, the inner pressure and said, “me too.” It made women trust Nike.

And since then, now more women jog than men, more women do sports or exercise or yoga, or fitness than men do. It made not just a market for Nike but a mental explosion.

Before I review the next DVD, I just wanted to recommend Smile, a graphic novel about braces. Yes, your friends had them, maybe you had them. The book is popular, and won awards but it is about a real girl, who did girl scouts and if you have a girl with braces, or you had braces, or you just want a good 225 page story for about $7 because you don’t ‘get’ graphic novels, then I recommend this. It covers the trips to the dentist (oh, I really want her dentist) and the trip to some specialist I had never heard of after she falls over and knocks out a tooth (remember doing that?). The best part of the book is not just that it is entirely autobiographic, and great writing but because it is 'real' you can flip to the 'author photo' at the back of the book and, in full color, see the picture, smile and teeth of the artist/author. From childhood store to you seeing the end result. The book almost made me wish my parents did what the doctors told them to and got me braces (almost).

The other DVD on my list was the award winning How Weed Won the West. It said it focused on the legalization of medicinal marijuana in 14 states, and how Obama promised not to prosecute medicinal marijuana in 2009. For those who don’t know, Canada, where it is legal all over, currently doesn’t have a functioning distribution network (they original hired a ‘low bid’ company that grew weed in the bottom of mine shafts, but the weed was so bad, those sick with cancer bought off the street anyway, then the company went out of business – so now there are licensed growers). In the US, on the Federal level, marijuana is a Class 1 drug but in 14 states (including California, Oregon, and Nevada), the medicinal use of marijuana is legal, under regulated circumstances (meaning, you need to fill out forms, and get a card). The uses in the US are for 1) Pain, 2) Nausea and 3) Cramps – which is how you get a legal use card. The problem is that under the ‘War on Drugs’ anything seized as a drug asset is sold or becomes property of the agency that confiscates it. It was supposed to be an incentive to focus on drugs for law enforcement but ended up being a steady and regular part of the law enforcement income. This is a problem when a law enforcement agency is told 'don't go after xxxxx' and yet they have been getting 7% or 12% budget revenue a year from raids on that drug.

While in the US, the cards for medicinal marijuana use are for symptoms, so anything from Endo, or CP, (spasms), to Cancer or autonomic failure nausea. In Canada, the legal use if for named and listed diseases or conditions. So, in Canada, the groups that were large enough to lobby are those whom doctors can sign off legally for marijuana usage: for example, MS, arthritis or Cancer. Smaller disease groups, like the one I am in, which sits between ALS and MS, while having symptoms of both, aren’t named in the federal law document and so end up in this grey area where I have the same symptoms as the groups which doctors can prescribe medicinal marijuana for, but am not one of the ‘approved’ groups.

Like all things in Canada, this means PAPERWORK and WAITING. So I can convince a doctor to make a letter, do paperwork and apply for a special compensation authorization (kind of like how I have to apply for disability federally, provincially, but also at the bank, the ferry corporation, each individual movie theather, the Y, etc – each requiring confidential medical information and often a fee also). After which, there is a long and unknown wait and usually a letter saying in a round about way, 'we would if we could but we can't so no'. Doctors who have over the years seen this are frustrated and groups for medicinal marijuana are frustrated so if your disease is rare, not on the list what your doctor does is sign a form of 'intent'. So the intent form says that the doctor would prescribe medicinal marijuana for these reasons IF THEY COULD, and the province (at least B.C.) doesn’t stop the sale or operation of the stores which sell cookies, oils, sprays, mists, and stuff to smoke only after a medical 'intent' note, and documentation of disease. The Canadian stores often have a mixture of people registered with ‘intent’ forms and with ‘prescription’ forms. I recently did a renewal where they came out to the van, to ensure I still had the disease and that I hadn’t died and Linda was buying it for another use (Gee…what would that be?).

So, when the DVD opened talking only about medicinal marijuana I was hoping to see how the system worked in the US, and how different patients and different stores worked. They talked about how in LA there were over 1,000 distribution stores, more than Starbucks. I was trying to figure out how the few people who need medical M. could be MORE than those who got the morning and evening coffee and latte but I decided to go with it.

Ug. Please avoid this DVD unless you like hearing phrases like, “Thus lawmakers bow to the corporate overlords” and feeling that Fox New is perhaps unbiased after all. But since I watched the WHOLE thing (mostly in hopes that something good would appear) lets see what can be salvaged.

First off, President Obama promised to not prosecute legal medicinal marijuana but to CRACK DOWN on people who were using this as a loophole to mass distribute marijuana. In two years there have been 100 raids and 30 prosecutions. The writers and producers of the DVD seemed to think that the law saying ‘medicinal marijuana for cancer is okay’ was a mass approval of growing, selling and smoking weed for everyone, ergo the raids were ‘acts of a traitor’.

In Northern California there is an area known as ‘The Green Triangle’ where like the angle of hill needed to grow grapes for wine in Napa, it is the right temperature, angle and humidity for marijuana and the amount of weed grown there makes the land extremely valuable. Some of the growers do grow only for medicinal usage and have become incorporated, like Pineapple Kush. To get a better strain, Pineapple Kush got marijuana from Afghanistan, and grew and mixed it with other brands from Mexico. This is why the weed today is far more potent than the weed of the 70’s and counterculture.

That’s about it. The first person who ever used medicinal marijuana shows up 1 hour and 10 minutes in and he only used it 15 year ago. The first prescribed patient is shown 14 minutes from the end of the documentary. It is a film about people who like to smoke bowls of really good pot. And now, with California laws, every wack stoner has opened a shop. The law in California is that you cannot get a license for a medicinal marijuana store if you have a felony. We follow three stores/distributors in LA, two of which are raided and arrested by the end of the documentary as none of three stores are legal (but they are ‘rightous!’).

The first place has in the back two shipping containers of plants (grown illegally – a registered card holder can grow 3-6 plants themselves legally in California), with maze set up with steel doors, bars, and counter doors, set up for…the DEA. When the DEA raid, they take the plants, the drugs and over $100,000 in cash. Yes, over $100,000 from a ‘medicinal marijuana’ store.

It turns out that grower had been selling illegally BEFORE the law, then when President Obama said he wouldn't crack down he opened again in the SAME LOCATION but with a new sign with a green ‘health cross’ added. He flashes a license at the camera, as the filmmakers try to put him as the poor victim. I went back and froze the frame. It wasn’t a medicinal marijuana license but a license for selling tobacco. Later, he tells his lawyer that he is going to drop the ‘store’ defense and tell them that he ‘deserves’ to grow and sell as much pot as he wants. Then later on he fires his lawyer.

The second store is a group of three stoners lead by a very wacky ‘doctor’ (not a doctor) who explains that anyone NOT smoking weed is sick. Plus he has different scriptures painted on the wall of the shop, and tells the one woman who they show that it is both a religious center and a shop as the “body is a temple”. The film shows his two assistants hitting heavy bags without gloves or even wraps on their hands and says, “These boys just smoked six bowls (of pot) and are in training”. Later it shows all three smoking bowls of pot and then as the bell rings to mean a customer they run and put on lab coats with the green cross on the back and run out to the front of the stop. The whole ‘completely stoned owner’ makes me wonder about the medical advice from here (he and assistants are later busted as well).

People who toke up in public are encouraged to say they are ‘taking their medicine’. (I am not impressed by these juvenile tactics, either it is medical and used such or not - is this DVD about how to break the law or how to legally use a product which helps a lot of people with various medical conditions?)

The interesting part of the DVD is a chance encounter the film makers have at a stream up in the Green triangle with a Mexican gang who is growing. After several beers and bowl, the gang allow the film makers to the growing area. Every single person in the growers gang has at least two guns, usually an uzi and a pistol, or an AK with a double banana clip, or a shotgun sawed-off. The film maker says in voice over, ‘if you are thinking about the guns, remember that if marijuana was legalized, then the fear would go WAY down.’

In Mexico, the marijuana cartels kidnap and behead officials who don’t give kickbacks to them. The corruption is extreme that from the police officer to judges and governors, all are expected to kick in or be killed. It is described by the FBI as ‘Capone times 50’.

This is the conversation they have with three of the growers from mexico, all of whom are wearing bandana masks, and often point the guns at the film makers. They don’t explain who they grow for, or how they afforded this land as they say they come from a ‘very poor village’ (later we meet a Irish with two uzi’s who does ‘security’). There is one guy who does most of the talking and presents as the boss but keeps looking to a different guy who speaks toward the end.

The film makers ask about the Mexican Cartels, and they guy (with two guns in his belt) says, “no, no…we do this as like…..a hobby.”, “Yes, ‘obby.’ Says his number two, both laugh under bandana masks. They are standing in front of 200 plants, one of several growing pods, he says, and repeats he “does hobby like…jogging as a hobby”. (medicinal m people can grow SIX plants.

Q: “Are your families in mexico doing better?”
“Now, with the little money we make here, we can send our kids (in mexico) to school”

In another growing shed (of several hundred plants) the guy with two guns and the guy with the automatic machine gun say, ‘Oh he ‘nice guy’ he bring strain from mexico.’

“Yes” says the talker, “This, you smoke some of it…and you treat people nice, yes nice.”

The heaviest armed guy who the talker keeps looking at turns as the talker leaves and says, “Everyone go where the money is. If they legalized it. Then (we) go to something that we get more money out of than this.”

That I believe.

The film finishes with ‘Smoke out’, a concert as a finger to ‘the man’, but before that they show the LA council who, after many drug sellers from other states, or who have felonies for selling have come and set up shops in LA, want to put restrictions down. They end up having better checking of licenses and limiting the clinics down to 163 (The whole south of the island, 300,000 people has 3 stores) and that they can’t be within 300 yards of a school (or in some cases a church). This is seen as oppression. I am irritated because I have learned nothing of other people who use medicinal marijuana and how they use it (many workers have never seen the mist spray I use, but have other clients with cookies or who smoke it). I want my hour and money back!

Have a great weekend!

Wednesday, May 11, 2011

Little Posts: 'Today better than yesterday'

Time flies when indisposed. I’ve been overwhelmed by balancing the appointments and the health needed to do them.

Until my body started to fail, then it was all I could do to endure.

The worker was unable to hear my whispered calls for help, from my weak lungs. They set the fan to blow on me as I struggled to speak, to move, to do anything in my paralyzed body to let them know ‘I’m here, help!”

Time flows fast around the working eye, and I hear her shut the out door. I still couldn’t move anything except my eyelid. But I could feel the lung deterioration, progressing into diaphragm breakdown.

I held on. I endured. For an hour or more there was an explosion from my limbs and torso of nerve pain, perhaps it is what locked up the diaphragm, or sprained it.

To lie there, unable to move, with Linda having a work day, not home for three hours, that is just something to bear. But when the pain came, unable to moan, unable to move, and too terrified to close that eye and let go, then it was a fight. I would not fall silent into that dark night. I told myself that I must hold on. I hallucinated, thinking I was in a war, wounded, left behind.

I prayed. Mostly thank you’s for the people known, for the time I’ve been able to spend with Linda, and others. My life seemed very short now. All my plans and hopes of what to read or see, or emails I hoped to write or read seemed so far away. I thought about it all, “Darn it” I thought, and I sipped what air I could.

I did it. I held on until Linda came home, my lips moving over and over, ‘help me’, ‘help me.’

She leaned over and and I could see part of her face with my eye. She said, “Looks like you’ve had a TIA” (TIA is a mini stoke). I couldn’t see a way out or through this. I kept saying, ‘I love you’ until I was sure she had read my lips.

I didn’t want her ever doubting what I was most thankful for, or what mattered. I couldn't see a way out of this, a way back to the diminished life I am thankful to have.

Linda promised to watch over me and my breathing. So I risked sleeping, but how much I did of that, and how much was hallucinations due to the pain, and lack of oxygen is hard to tell. Linda noted that the breathing was shorter, shorter and erratic while I slept. So weak I could not drink. So Linda used a straw to suck up Gatorade then hold it with her finger on top before dripping the drops into my mouth. I needed the calories to try and get some basic function. Late hours but I still couldn’t move, drifting in and out. The bed was raised so I could swallow the mouthful of Gatorade, then lowered so I could breathe. My stomach was bloated from air swallowed in sleep. This air was squeezing my lungs, stopping them from inhaling.

I was able, then, to take the breakthrough pain pill with Linda putting it in my mouth, and dripping in Gatorade. My jawbone snapped out of the hinges by my ear, as it had for the last 10 hours. The pain had made most muscles locked in extreme tension.

Take your arm, make a fist and squeeze as hard as you can. Feel that tension in your muscle? Remember what a leg cramp feels like. Imagine a cramp going on for an hour. Impossible? Not if it is paralyzed that way, locked with muscles in full contraction for nine hours.

There are things we think are unbearable until they are endured. 'Longsuffering' the bible calls it. Thank goodness the Fentynal had been increased last week.

As the calories grew, things got a bit better, which also meant worse. The muscles started to drop, to release. My body relaxed, and it was like I was being pressed in medieval days, a board on me, with stones added. The only muscles that moved were the ones which twitched uncontrollably from the lactic acid which had built up.

I was faint, dizzy, but I could move my head, and I was starting to get parts of my body back. Linda put my legs, knees up, then swung me so they were off the bed. A tilt of the torso and I fell forward, Linda catching me, as we stagger, my one leg under control, to a cool room.

My hands and lips purple from lack of oxygen, but I started to be able to breath, a little deeper as I cooled down and every bit of calories. It took another three hours. Linda had been caring for four hours. I never would have gotten that care in a care home. But I slowly started to get better.

I couldn’t control my arms well, they would twitch and go in and out of spasm from the hours of muscle tension. I let my head loll on the headrest.

Linda put what we did down in the ‘solutions’ book, because we know neither why it work nor why my lungs declined so severely and so quickly. But it worked, and we hope if that happens, it will work again.

Please, never let it happen again.

I will start blogging regular as I can get out of bed. I’ll show pictures and write of Sakura-con and the trip as I have the ability and strength, if that is okay. I thought I ‘had’ to do the BIG Sakura-con blog, but now I’ll do ‘little posts’.

I worked today a little on my new birthday goal: some new disabled parking spaces in Victoria. There is no rule in Victoria, BC for blue badge spaces so no one makes them. The workers call for me. I talk to owners. I have more owners to go, then the council, and try to win over one parking spot at a time. Right now, there are several thousand street parking spots, and 28 disabled spots in Victoria. Every parking spot in every lot is a gift for all.

But that is another ‘small post’. I’m glad to here. Here is good, today better than yesterday.

Wednesday, May 04, 2011

Survival (version 2 with editoral notes)

Those around me know without saying it; because that’s the rule, you never say it. Dying. When you are there and I am dying and soon, that night when the fever keeps up and the pain doesn’t go. Those are the nights the body is shaking, and burning, and the heart is crushed and the body shudders when it spasms. Then the lungs need to have someone breath for them as they lay down, for a few minutes; for longer, and longer, it goes on and on. On those nights no one talks about ‘how long’ or doctors or hospitals, and sometimes they leave the room as they can, not watching anymore. Then a corner turns and while I’m as weak as a kitten, it might not be this time, it doesn’t feel like it anymore. So no one talks about dying. Because that cloud has passed…for now.

And so no one ever talks about it. Which means that everything is supposed to be the same day to day. But it isn't. I am lucky if it is the same for six hours.

And for me? When things are bad, it is like trying to live in a burning house; this isn’t a place anyone would want to be. When the body starts failing and rejecting the most basic functions, the physical cost is more than one would think consciousness could accept. The oft prayer: “Oh God, please, please let me pass out, let me go, out, away, I don’t care, but I can’t do this anymore.”

Except somewhere inside the need to keep going is something hold to. ‘Just a bit longer and we’ll sleep and sleep...’ the promise is repeated through the dozens of minutes until the hours pass. When I finally sleep and wake, fever free, but to weak to move, all I want to do is be up. I’m going to live, at least a while longer, and there is so much to do. (Which is why I can never seem to get to bed on time, that and the frontal lobe thing means I have very low will power at the end of the day)

“Pain pills” they say.

“I can’t move my hands, my arms.” Fingers push the pills and the water nozzle into the mouth.

Later you beg, “Please, pain pills.”


‘PLEASE.” It is hard to make it sound like a request, and not like a prolonged whimper.

I do not envy Linda as she bears the bad news, and so more silence before, “can't have any more for three hours.”

I make the sound that is half hiccup and half sob. There is me, and the pain and I moan, sometimes I wake myself up with moans. “Anything, please..” I know I sound like a junkie, or a beggar and I don’t care. How can I care what happens outside my skin when it is like this inside it.

And when I can breath okay, and Linda, a week of working done, helps me get chores done. I find out what I’ve missed. I lost a weekend entirely. So no postcards out, but I didn’t receive any mail either. Well, that is what it is. I think of the dozens of people I spent working through the night to make postcards, and cards and package gifts, so that they know I was their friend, as much as that can be without skin contact. And if 90% of those individuals are gone, I miss them. I miss them but I hope they are happy, because oft they didn’t seem so happy the last few times they emailed. I carried as much as I could for them, perhaps it wasn’t enough, or perhaps I wasn’t giving what they wanted. But now I am failing true friends, those who have been there during the bad and worse times. These are the ones I very much want to send a card, a postcard, an email. Forgive my failure . (Looks like a Pity Party to me. I can't tell which bummed me out more, getting no post or being so ill that I haven't been able to get out any postcards or worse, four cards for gifts already picked and waiting, not in two weeks - that would be lax, except it isn't, as just being up to talk sometimes is pushing my health. But the rest, yeah, it is a Pity Party. Oh well, I guess we all have them now and then)

I am so ill I only have the computer on every few days. Often I am in so much pain that I don’t want to write anything in case it comes out full of that pain or angry. (But I got tired and frustrated and that came out too. I think people who twitter or tweet or whatever takes even less time cannot imagine not turning on the computer or checking email for days but it happens, and the more ill I am, the more it happens.)

I can pretend I don't get angry, but I do, though not at Linda so much, still at myself though. But while I get weary at the 'trench work' (the digging and filling trenches which is the chore of staying alive), I don't get angry. On Monday this week, the first day I can sit up, after doctor appointment and four others, I somehow change and am up at the Y doing the boxing workout, harder and harder until I sweat and sweat….I can’t risk not sweating enough. And I think, “52 more times and I might survive a year.” By the time I lay down for the nap afterward the pain in the spine is so bad that I can’t stop moaning, and screaming at times. This is the choice I made in order to live. How can I be angry at that? (Pretty easy. I have to do all this horrid stuff. The director of the Y told me he doesn't do the amount of push-ups I do, nor could he. I do them, or I die, yet I still am viewed as a fat lardy)

I get angry though at those who depend on my sense of honor, trust and word to remain after they break their own. I do not like the computer some days, when this is all it brings me: a world filled with half lived lives. It isn’t the money they make, though struggling from grocery bill to grocery bill it hurts when my parents write Linda (cause she’s ‘nice’) to tell her about the new Wii, and computer and netflix subscription and the two week vacation and how they will be back the day before my birthday. It is that they know I have protected their names, identity, addresses even as they use the blog. It is perfect for control freaks: think you know and judge the other person without ever having to open yourself up. (This is the frustration of a few things or incidents which keep occuring, often never mentioned on the blog, so why do I guilt everyone out? Why can't I be open enough myself to say that I get hurt often, sometimes daily by the insensitivity to some people in regards to my disease, my limitations, but also in expecting me to be the same person I was several years ago. For example, if you email me at 4:00 pm, and I don't email you back by 8:00 pm, I have not 'abandoned' you, nor have I 'rejected', or 'spurned' you. Just stuff like that, which hurts because I end up feeling that I have, that I AM a bad person, only, I was sleeping or ill in bed so later, when I read the emails, THEN I am a bad person)

Risk nothing: that is a half lived life. Or use me as a sealed confessor, then speak or comment in ways opposite to that. Masks are a half lived life: if you spend eight hours a day in a mask, it is half of your life. (I think I would amend that to say that Masks can be a survival tool for a time, but also a safety net which can turn into a silken trap where they are worn for a life, or interchanged so often that will the REAL....whomever please show themselves. I we had known how hard it was, would we have come out of the closet? Thankfully we didn't, as I know we never would have grown. The same true for disability - I ignored those with disabilities because my own were ignored, and I wanted to please the people who did that more than I wanted to accept that as part of my identity and learn about it. That was a bad decision, and one which went on far, far, too long)

Soon there is a birthday, my first. I have had no birthdays because my father decided it was ‘vanity’. And if I got presents or even money from my grandmother or my grandfather, he stood over my while I wrote a note tell them no thank you and he took away and sealed it and gave it to my mother to mail. I have yet no party, as I don't know if I am supposed to plan this or others, but should they come? Let's vote. I don't know what else to do. The last time I had written communication was during one of my parents two month vacations last year (no, not the two cruises back to back, no, not the one in Arizona, the OTHER one) saying that the promise they made some years ago to cover a medical expense, well, some of their US investments weren’t doing that well so I was a luxury they couldn’t afford anymore. I don't know what to write back. But I think they would be a party buzzkill (or a curious attraction?). (Okay, Pity Party Number 2 - Wake up Beth! You essentially have no family, or certainly not one that wants to care about you. The quicker you accept it, the less they will be able to jerk you around. And giving them 'new chances' every two months doesn't help. After all those new chances, they can ask for one if they want one, they are not shy is demanding the other things they want from you.)

So, surviving, or not, at times.

I made it out to vote Nationally. We had an election in, nothing changed. I wasn’t registered, but had the documentation. Now I am registered for home visit voting (“though there is federal, provincial and municipal and they each have their own requirements” I was warned. I gave them a look and said, “of COURSE, I am in Canada, right?” Which means if there is a 'back asswards' way of tripling the energy for those who are disabled or elderly, it will exist.)

See, when I have a day when I have two spoons (instead of the 200 most people have in a day) and go to vote and end up being okayed to go vote at booth 184 and then the person at 184 tells me that they don’t care who said what but they weren’t going to let me vote and what was my name again. No, no, I need to start at the beginning and go to the START of registration line (they ignored me asking, ‘Where IS the registration line?’). And the registration line wants to know why this wasn’t taken care of when I showed up by the first person. And more paperwork, and more documents and then back to 184 where my documents are very thoroughly checked. How many spoons is that?

With so little energy, why would I waste anymore on anger? Because I have asked 10 Canadians, all managers what they thought the unemployment rate for Canadians in wheelchairs was. Not one guessed lower than 70%, several guessed it at 90%. When I told them of integration on the trip to Sakura-con and how the person who parked us on the Washington ferry was Deaf, they just stare at me with a ‘Is that legal, shouldn’t someone go and stop them?’ look. I realize then how small we have allowed our minds to be, through a collective bigotry we would rather laugh awkwardly about than change.

When the same person who guessed 90% unemployments then says they are shocked, I ask how they feel about racist jokes, about sexist jokes, and if they have EVER seen someone say to someone telling a person in a wheelchair NOT to do something or pushing an elderly person aside, or saying or hearing someone say, ‘God, if I was like that, Shoot Me!’, and EVER seen or heard anyone do ANYTHING, EVER not just now, but their WHOLE LIFE? So far I haven’t had anyone who has heard someone say: “No.”, "That's offensive", "That's not appropriate."

I have lived a life, working from tween years, for 20 years as a servant. I have tried to serve so that the person being helped didn’t realize why this day, this week, this year was better. Part of that is listening to people, finding out what matters to them, what is important, and what they like: to find out who they are and who they want to be. People send me postcards as gifts. Except that Postcards are my JOB. So that is like me sending people pencils or shoe laces. Because they use them right? And I use postcards.

Sometimes, people ‘get’ it, and the postcards they send for the postcard project, not to me, but to the project, are ‘right’, they are a paper or style not available anywhere else. I got a gift of postcards that are going to make at least 50 children happy. That will make Linda, Cheryl and I happy. (Some people send postcards and don't specially say they are for the project but I assume that. But they also have a relationship with ME.)

Someone came and visited me as I was. “Where you are, there shall I be.” They didn’t have to say they loved me because how they treated me, how they understood without having to be told, how they rested my head told me everything.

I needed socks and there were socks. (I am giving examples of things which happened recently of things which stay in my mind, which has a short and small memory, that say, 'I hear you. And that matters.' I am certain this has happened many times, many, many times over the years. Sometimes though, people will drop off the radar, and that is kinda sad. It is like a friend who won't talk to you and won't see you - that's the limitation of internet friendships)

I am not angry at whoever is reading this, I am sharing with you what it is like when consciously having to grit my teeth to take the pain of lifting my lungs so I can breathe is a day when no one talks of dying because I can do it, and I might be able to do it for months. (or not)

I’m not angry because while I might miss you, if you used to comment or sent back postcards, or post, after two weeks with no letters, in fact, no mail at all last week – so no Easter messages at all. It is not the best reflection of humans. (Sheesh, get over it Elizabeth! Mail is delayed, stuff happens. This is the problem of writing blogs combined with the emotional and mental decay - sometimes the adult writes the blog, sometimes the pouting 8 year old does. Though I think for all of us, a pouty 8 year old is not far beneath the surface on at least a few subjects, this it seems is one of mine)

I spent 20 years, silently making sure you were okay. (not eloquent) I spent 30 plus years being the obedient child, the sibling who wanted only reciprocal love and if I was thought of at all, it was how great it was that I kept doing all that I did. And after I ill, I tried, in many ways to be there. Really, I did. (I think there is a frustration that people assume that well, of COURSE, Elizabeth would push through and push on. And perhaps the guilt of not being able to put up photos of Sakura-con quickly is in there, only because it seemed several didn't want the pictures, they wanted more or different pictures. So the one nice time away became something I felt I couldn't talk about or show without criticism. And then there is the challenge of saying how I feel when often I find criticism painful. And even more because I share pretty bluntly and openly, but those who find problems are not coming out with examples from their own lives, just finding fault with how I am living or expressing mine. But then, if I want people to read with interest, I should be an interesting writer. I don't know how much a palliative and brain damaged writer CAN be a 'objective professional' - should they whole 'anything goes' idea of critical response be applied to someone who has brain damage, or who has such a limited scope of life view? It is an interesting question).

And now, I am several months PAST where people disappear from the public's view, long past any 'last lecture' or where they are told to spend some time with family before it is ‘too late’. Some people don’t get how I can do things, still go to the Y, ask how I am, and when I say I am palliative, they get all puzzled, or frustrated or angry because how can I be there? Except those who know me, who see me and who either don’t talk about it, or say, ‘Today, you’re looking better.’

So, I am going to take some time, of the time I have left and be selfish. Which is why I guess talking to the four adults sending me in a round robin to get to vote gets me upset.

For those who wonder: those actions you take, the letters you write to me, to anyone who is ill, the drawings you send, the parts of yourself and the listening you give to those who are ill, and the emails, they are ALL appreciated. And when you don’t hear anything back, then listen to me now becuase here is your 'thank you', because the ones where you don’t hear anything back are often the most valuable. If you knew how precious you might be ashamed. I know I was when someone’s widow would say, “Elizabeth? Elizabeth McClung? I know you.”

“No, I don’t think so.”

“Yes, you wrote a letter. He kept it with him, even at the hospital he kept it with him.”

And I think of something that I wrote, finishing early so I could go off to do ‘something fun’ and all I can feel is the overwhelming feeling of shame. It could have been so much more, it SHOULD have been so much more. “I’m glad he liked it.” I say and try to escape since my earnest desire to burn a hole through the floor has failed.

Paula asked me in the comments ‘What do you want for your birthday’ and I thought, “I guess I am supposed to say, ‘Peace on earth’, or is that just for beauty contests?” It is my first birthday after all. I don’t know what I am supposed to do or want. Things are actually starting to look a little better for our life, and I know how many people in Japan and elsewhere have needs. I am saving for a piece of art which I don’t know if I can show since without much of a frontal lobe delay I am more vulnerable to being laughed at (oh, I checked, I can't reproduce without permission and I don't have it yet).

DVD sets of TV series or seasons are coming soon, so probably gift certificates (they are REMAKING the series, The Killing, the amazing hit show from Denmark so it is set in Seattle with American Actors! This however was nothing as strange as finding parts of ‘Little Britain’ REMADE with American Actors for the American ‘Little Britain’ – changing the settings, the backstory, the situations, the character and then the complaint is, “I don’t get this British Humor.” – British Humor? What possible UK aspect is left?) and certificates are a good gift as Linda and I are watching Burn Notice as and when we can (apparently for the second time – a plus side effect of temporal lobe damage), we are half done season 3, so the new one is up next. We don’t want Dexter or Chuck. But I am looking forward to some TV with ZIP, with something as I am pretty much out of things to watch when the pain is bad. And lately it has been bad (they upped my pain meds before the Sakura-con trip then another 75% up after the trip along with a doubling of the breakthrough medicine). That takes care of 50% or so, sometimes 30-40% of my pain. I dreamt this evening that I was having my thumb severed from my body, and waking up to find it was still attached, and that I haven’t had to snap a dislocated jaw back in wasn’t even relief, it was just facts.

As the LCN said after seeing the burns on my body from the patches, which burn through the skin down to membrane, and what it was in Feb and is now he made a face that was like he was going to gag up his lunch. “That’s insane!” I totally agreed with him. However I don't think sanity isn't the best way to deal with where I am right now. It is survival, and if I can keep doing it, then I live. And living to me is better than the alternative, and the phrase ‘hopefully a better quality of life’ gets a ‘Hell Ya!’ out of me (at least mentally on the bad days). Oh, stuff on wish list is good too, I think, or if you know me, you listen to me, then your mind is far more than mine can clever be.

The DVD sets I hope for include:
The Inside Complete Series (not out – is there a way to get episodes? The women who wrote first season of DollHouse did this)
Royal Pains Season 2 (May 17th - $27 on Amazon)
The Killing (from – Danish Version)
Waking The Dead Season 9 (From Amazon UK – out now)
Dark Skies (is this good? It is from the 1990’s, I think)
Stargate Universe season 2 (May 31)
Burn Notice 4 (June 4th)
White Collar season 2 (June 7th)
Rookie Blue (May 31st – is this good?)
Swedish Fish (now – they really are fish, just gummie and yummie)
George Gently Season 3

DVD sets I don’t have a clue about: Nikita (didn’t this get done already? Twice?), Haven Season 1, Glades Season 1, Covert Affairs Season 1, Rizzoli and Isles (this looks interesting!)

DVD sets to which I say, ‘thanks but no thanks’: The Big C (Will they whore terminal diseases – don’t they always? “We don't see the fear, the depression, the disbelief, nor are we let in on the details of her diagnosis or her treatment options, all the minutiae that terminal patients face.”), Supernatural season 6 (Once we have the ‘quest for God’ or ‘Quest for Devil’ I watch season 2 again and enjoy the TV movie of the week), Chuck (I liked him as a nerd, with nerd friends, we both ditched the last season), Glee season anything (I tried but could only watch 1 episode at a time, the lying by the characters was that bad – I don’t like lying and I sort of hated everyone by episode 8 – my 4th try at watching season 1). Mad Men season any (the longing of men for the ‘good ole days’ of doing bad things, drinking, smoking, littering and treating women like pets’)

Back to getting to sleep on time, getting up, and getting the things done that need getting done. I do hope to have energy for sorting photos soon. I want to share more of my life with you. And I will keep trying.

For K, for M, for V, for J, and Linda and all my friends because Cancer gives equal opportunity, Laura is doing the 60 km walk to fundraise for specific items like two mobile mammogram machines (10% of those with Breast Cancer are men – one man family knows had his ribs removed and a kevlar mesh to keep his insides..inside), and financial assistance for families. Her descriptions are honest and real. It isn’t just the cancer, but the treatment, the surgeries, the unknown complications, the tests which hound you with terror. Having had my gums recede the last few weeks and a tooth loosen due to jaw clamping in sleep, I could relate and wish this on absolutely no one: “She was in so much pain that she clenched her teeth so hard that she cracked two of them and now has to go in for crowns.”…” losing so much weight the little fat pads in her feet disappeared so it hurt to walk, her bones poking out and her clothes hanging off her because it hurts too much to eat and what she does manage to eat she can't keep down.” The link to her fundraising page is here.

The big C means more to me now, inside the system. My GP is a terminal C doctor, my hospital treatment, my prognosis, my developments what they can guess or figure out is because of those who have had lung cancer, heart cancer or other cancers which at the end affect autonomic failure. The way pain is understood at this level and the kind of pain treatment I get is thanks to the tens to hundreds of thousands who died from Cancer. The way hospice, respite and care palliative home care will occur is thanks to the voices and advocating of those with Cancer and the families. I wheel on the bones of the bodies who have gone before me.

Thanks is inadequate but a place to start. I will think if there is some focused fundraising I can do, a sort of 25% of sales of items doe Laura’s walk. I am open to ideas.

For those who are hanging in there: I get out of bed every day. And every day that is an act of will. Like so much. I say that because I know that can be true for so many lives. This is the price we pay so we may experience the unknowns of tomorrow: having things like a loved one braid your hair, or sharing a song.