Wednesday, December 29, 2010

Orgasmic gaming and life inside a Terry Pratchett novel

I wheeled to the library tonight, first day open after Xmas. I had books and manga to return and the library always had the excitement of unknown delights.
Upon entering the library, the 'quick-view' 3 day DVD's, free for check out (if you could find something good) are just on the right. They had just put out a new selection, two rows of DVD's from 2010, just processed that day: films and documentaries which, due to library closure would not be due back until Jan 3rd. I got Knight and Day and Robin Hood. The limit of the 3 day DVD's is two DVD's per card, but with Linda here that means I could take out four. I learned to take what looked good and then check against Amazon and Internet Movie Database to find the best. I got my computer assignment, the one on the corner at the back, facing the lounge chairs. I could wheel into it by removing the chair for it. Linda went to get some week long rentals from another section to check.

I had the IMDB open and was checking titles.

A Guy sitting 15 feet away facing me had wild beard, and unkepmt hair, with two layers of jackets suddently said, “Maybe you’re praying to the wrong god!”

I looked up startled. Oh dear, Beard-o had a steady stare at me. Had I talked to myself? I had been reading about the DVD in my hand: You shoot, I shoot. It was a ‘must see’ dark comedy satire film about too many hit men in Hong Kong, so while some hit gals are having a 'hired kill sale!',another hit man has a ‘bonus points’ reward scheme with a card you punch, pay for five assassinations and get the sixth for free.

Did a sigh of satisfaction for hit man humor indicate a sign of my divine dissatisfaction? Are DVD's the new religion? My daily offerings and collection would certainly make me a Shrine Maiden then. But maybe Beard-o wasn’t talking to me? I looked up.

Yup, still staring right at me. I lowered my head and looked up another DVD. What it is that makes guys need to confess odd things to me? While getting the DVD’s, a guy with 20 hairs of comb over stared at the DVD’s before turning and telling me he had not watched a DVD for an entire year. “Yup, all due to World of Warcraft.”

I told him I heard playing WOW can take up time.

He gave a sigh of longing and satisfaction which bordered on post orgasmic and said, “Oh, but it was worth it....every hour.”

And yet ANOTHER reason to avoid World of Warcraft.

At the computer, Linda had returned and now sat beside me. But Beardo rose, wandered deliberately over to the back of my computer and stood, his shoulder dropped towards me, connecting us as his voice lowered, to make sure only I heard he softly intoned, “Limited offer, okay. For a reasonable donation, I can go talk to MY god for you.” I felt like I was in a Terry Pratchett novel, perhaps of Small Gods and had annoyed an obscure high priest. He saw me startled hesitation and added, “Take it or leave it.”

I looked up from the computer, put on my best ‘please do not kill me’ smile and calmly told him that I appreciated the offer but I think I would ‘leave it’ at this time.

He brushed past and said with a bitter emphasis, “Then you won’t get NUTHIN!” and ambled toward the main library section.

Wow, that actually hurt. I had pissed off Beard-o, and felt some self doubt mixed with a tinge of rejection pain and the calm of finding out life is far more surreal than expected.

The self doubt played through my mind: Linda had just applied for one job, other jobs were finally, after almost a year, showing up for application. I hadn’t heard from the neurologist. What if I really had just alienated not just another doctor but a god?

I started laughing softly, then somewhat hysterically. After 10 seconds Linda wanted to know what was up. “I don’t get nuthin.” I told her. “Don’t you see, I don’t get NUTHIN.”

She just gave me ‘the look’.

“I didn’t DO anything” I protested, “Maybe he saw the wheelchair and meant that, who knows?”

I’d like to think that if I was ‘entertaining angels unaware’ it was not Beard-o, or the WOW guy, but the elderly lady next to me who I helped sign online after she had failed three times। I read out her card number to her and we double checked it on the screen. This time it worked. I told her I always had problems with my library number, too many zeros and six’s to not miss one. I hope that angels are those who check our generous spirit, rather than those who try to blackmail or extort. Maybe Beard-o was a pissed off Santa, who now I was on the ‘nasty’ side of the list (I know it is supposed to be ‘naughty’ versus ‘nice’ but I did NOT want to do ‘the naughty’ with Beard-o).

The library is always a place of mystery and adventure.

Tuesday, December 28, 2010

Illness: the three ghosts versus the dream of that day

Xmas and Holiday time for me is about those ghosts (as I seem a social one, making 'oooooh' noises and chain clanking from my study), ghosts of past, present and future. They are not just the Dickens tale but the emotional fluxes as I/we move from the past, through the present to the future. And with those experience, while others go from the pre-independence of family obligations to the empowered future promises, I move backward. I live as the Angel of History, watching my past piling up at my feet, while unable to turn around, never knowing the future.

This is my ghost of the past: I had misunderstood ‘pace’ for ‘value’, and believed the fallacy that because I had more options, I made better use of them. So sure, I did everything because it was expected of me, because it was what ‘good girls’ do, because I didn’t know what else to do. And sometimes I did it because it was exactly what everyone didn't want me to do.

This is an error we make individually and as a culture: that slower, or that ill or disabled means having less worth, less meaning.

What do you want to do when you grow up?

I was always asked that. So why is that when I meet family, I don’t feel grown up at all, as I fall into old habits and everyone works so hard to make me 15 again.

When I meet my brother, he tries make me feel the younger sibling: to parents I will always be the child that needs to be ‘taught right’ or feel guilt because I must have done something.
I used to come back from family visits with frustration, relief and depression: frustration that they didn’t seem to want to know me as much as try to make me 15 again. Relief from being at MY home with my space and my place, but also depression because I hadn’t lived up to the expectations I thought they had for me, or I had on myself.

I will always long for my brother to be proud of me, his wife proud of me, and my nephew, and most of all my parents. The aunts and uncles, and cousins I wanted to show that I could come back to this town where my being a fourth generation means rare part of city history, and show them that education wasn’t ‘stupid’ or ‘a waste of time and money’ or ‘airy fairy’ but something which not only gave me joy but gave them someone to brag on.

Love withdrawn hurts.

Yes, that is a stupid reason to come back or act at all, but I feel it all the same. Whether I have this or Lupus, or CFS/ME, Fibro, depression, whatever disability or none at all I would still feel that I have to adjust to SECOND best. Or perhaps lower than that. Every person walking with purpose past me makes me feel ashamed, not just for me, but for the expectations I carry: that I’m supposed to show what all that time taking degrees was worth.

Yet have I ever had a job I didn’t try to change, to take on the next two levels of bosses? Or doubled my hours?

This is my ghost of the present. That feeling that I never tried hard enough, goofed off too much, or worked hard enough. And that life has passed me by.

The joke is that this, right now, is life. And it is each of those who turn away, not I, who are passing life by.

New Year is where we see the ghost of what we can be, when we ask ourselves “Is this what I want to do, and who I want to be?” And we challenge ourselves by making a list, perhaps looking too much like the list of last year, to vow the change that will occur: we will be changed men and women.

Terminal illness, late stage reverses all that, and I need the security of a family not there, to be held, supported, and being able to be HERE, without worry, not pressured about the next "What are you going to grow up to be?", medical or otherwise.

This is my resolution, to stop looking, and learn to trust me and those who accept me, as that is what matters. I won’t be able to meet all expectations, and I will be doing less, and often just surviving. Some days I can’t even do that myself, because I am fragile. I wish I wasn't but I am very fragile and need one or at times two people to assist me, to do the very basic things to keep me going like food, water, air, movement, so that I get a few hours on a day like today to 'do', like writing this down.

I did the math and the 30 postcards I did this weekend, if I had my normal life, would be three months volunteering. Yeah, it is just a postcard, or a note, or a present, but for me, it is 1/50th or 1/40th of my waking life. And soon I won’t be able to do that, and then I won’t be able to write.

What ever time is left, and it isn’t that much I can’t be a late 30 year old, or Dr. McClung doing research, or an impish teen or hot goth crip, but all of it and none of it. I don’t have time to be other than what I am that day (which sucks as all the good manga I want to read is coming out in may, and Sakura-con is late April. There is one manga coming in May Ai Ore! (Love Me!) where the ‘princess’ from an all boy’s school and a handsome and butch ‘prince’ from an all girl’s school find themselves interested in each other through music, while they bend which gender is supposed to do what, and have to fight the expectations of their schoolmates, particularly the same sex ones in love with them).

The Butterfly is apt as a symbol I think for those living with many chronic, life threatening or terminal illnesses. They are butterflies with invisible wings. For the caterpillar’s life is changed and lost, a time of pain, sorrow and loss, before learning how to become something new, not flight like a bird, or focus on the ground like the caterpillar of before but something between. It is through the struggle, and pain, adjustment that such fragile wings emerge. We cannot be what we were, or try to maintain that path. I cannot be what I was, or planned to be, or wanted. I have to learn new dreams. And I respect those who take the time to accommodate me, and see the wings and achievements made, not in comparison of last year, or six months ago, or last month, but in joy of a life being lived. These are the real friends, but the few friends.

It is hard, as people forget we trained, we were like them once, that we had big dreams, big ‘accomplishments’. So they trundle on out of view while we still are scatching at our large dreams (day to day), realistic or unrealistic dreams which know the limitation of our illness and accept it or blast through it. The secret of being FIERCE is being brave enough to know the likely outcome and act anyway, because this is what that day is about.

I know that there is supposed to be balance, and spoons of energy, and good and common sense. And that probably works for 95%+ of individuals.

I know my parents stopped coming to field day because I entered into the 100 meters, 200, 400, 400 relay, 800 relay, 1600 relay, mile, hurdles, and high jump and the comments were, “She’s not going to make it.” or “Why doesn’t someone stop her, can’t you see she’s in pain.” It was LA, summer, and yeah, I had my head back, hanging loose as I sucked smog that hurt to breathe, but I was still running and I was in third place.

Later, after being able to walk again, and once I had gotten the knee operations I was told I had to be careful, very, very careful. My knees were carved up, and no more chancesL: so I trained in running marathons. When preparing for a qualification competition I ran over 100 miles each week and at least 10K every 8 hours. I read the best marathoner had run 100 miles a week, so I tried to keep at 200 miles a week. This was all perhaps stupid but it was all very me.

In Manitoba I used to run around and around a track, and Linda counted the times around, 54…55….56, I tried to stay ahead of the bugs. This and working driving a fork-lift and doing custom paint mixing if you can believe it. I think it was Linda counting the laps that made me understand that I had someone who understood that my dream was just that, a dream, not something logical. Yet she waited for me, bugs and all. To find a friend who understands this is to find a real friend; a co-companion through life.

I don’t know what secret dream you have in your heart. I still want to go to the Olympics, and of course, lead a rebellion in the streets. But if over a couple days, I write this, then I finished another race, and I’m sorry, I’m off to the next one. I would love my friends to see and be with me. My dreams are just dreams, and with help, they might happen, they might not, but I WILL try: brick wall in the way or not.

I’ve got a limited amount of time and my ghosts of past, present and future say this: 'stop listening to us'. I will live the time I have as I can, sometimes resting, and sometimes going 'Banzi!!!" (CHARGE!), and if you want to, you can help me, join me or get the hell out of the way.

Friday, December 24, 2010

Father is with a pod of whales and Mother just came from space: Xmas time is here

I went to the library a day or so ago, and found a few books (and DVD’s, I now have anquishing films about coal miner strikes and conditions from China, Poland, Canada and Japan - ALL of the DVD's on Coal mines have won awards – I didn’t even know Japan HAD coal mines?). My cheeks are not rosy from good cheer, but that is a warning light: “This head may explode, please stand back!” – I wish, it is more like I slump over and get wheeled away. But if I connect the overheating to a bomb connected to my neck...then I would get that cool warning...and a headless torso. I overheat twice a day at least.

Since then I have been busy...yeah, doing good works, reading manga, and er..um, performing miracles plus getting really depressed from these DVD's about using coal for electricity (go solar, go turbines!). Also I'm recovering. Turns out, wheeling down, two hours sorting stuff, hauling it all home, then sorting it and some other stuff, cleaning the house, and doing and the photo taking and I can’t remember but more stuff and it all went a bit 'ug' for two days after that.

I hope your Xmas preparations go well. I am practicing how seductively I can get naked. Linda says we are going out to someone’s house but I’m practicing anyway, my chances of getting some are limited so I hope Linda finds the extremely SLOW tease of stripping (like five minutes or more) to be highly erotic. Go go Gadget Neuropathy! (oh, now that I think about it, did Inspector Gadget have an assistance dog?)

My family is enjoying the Xmas meeting in their family home in Buenos Aries, where my father gets his yearly stipend as a ex-KGB hit man, and a CIA double agent. Too bad I can't attend.

I could say that I don’t know where my parents are, and I will all alone, which makea this a traditional Xmas dinner and pathetic. See, I won't say that, because while this COULD be sad and pathetic, I have decided to be the rather strange child in the corner who turns adversity upside-down by claiming impossible things about my parents (Mine arrived back from the International Space Station just in time to do exercises for the Red Planet mission in the Desert) as they can’t REALLY be disproved, right? I mean they aren’t here, so that’s how I know they are studying the seasonal migration patterns of humpbacks using a submarine. My brother is the helmsman. I know deep down in my heart (near the slushy stuff) if they could convince a pod of the whales to come this way, we could all be together, but I realize that my sacrifice is really humanities' gain. Besides, after that they will have to infiltrate China to make an assessment of emerging markets (after the cold war ended, the need for national spies decreased so now my parents are corporate spies for Proctor and Gamble).

So I will be listening to whale song tapes (see, they sent me those, that’s how I know they are following the whales). And if I listen just hard enough, I can hear them through the hull of the sub, just like the letter they write:

Dad (reading a book): “mmmm..cheese.
Mom: “Yes, I got it at Trader Joe’s, the American’s have such inexpensive cheese. Plus the banana’s were only 19 cents a lb.”
Dad (Knee Deep in Banana’s): “mmmmm.”
Mom: “I’m glad you liked them, I got a couple of deep freezers and marine fitted them for only a couple tens of thousands of dollars and now the 80 lbs of banana’s I go will stay ripe. Think of the savings! It is over $20!”
Dad (turns page in book): “mmmmm”

Ahhh, our Canadian tradition, as individuals write letters about our savings per item or meal to relatives back home. I cannot imagine why the Europeans have not several men and women of letters, whose journals are must read on the Oxford syllabus? I, for example, can use my grandparents journals to trace the savings on early bird buffets back for over 20 years, along with whether the Lawrence Welk show was good that week or not. I. on the other hand. write in my journal the cost of toilets as I travel around the world (the closer you get to Ephesus, Turkey, the more it gets, until it is about $5 or so). Unlike Linda (a.k.a. the Camel), this is critical information: particularly the countries which use black lighting in the loo so your pee glows in the dark!

So..yeah...very busy.

Monday, December 20, 2010

The Long Dark Night: Who will Answer it?

“In my view, there is nothing more vicious and outrageous than the abuse, exploitation and harm of the most vulnerable members of our society”
The Long Darkness is always with me.

It comes into every life.

All I have endured, escaped and faced, and those acts which reduced part of me I had believed myself free of. We all do, those parts of our lives, our selves, memories and feelings we don’t talk about.

I was wrong. That is the long darkness of chronic diseases, terminal diseases, disabilities: never being able to escape that which I thought already escaped.

It isn’t about the dying. Or the losses, loss after loss.

I have known and watched three people who have sat and denied treatment rather than enter that darkness. They died.

It isn’t about the pain, though I just spent two days in a fever and locked state, lying with one eye open in the swirling hell of pain each second held. But it isn’t the pain.

The illness brings back those parts of my life that brought shame, self-loathing, and emotional pain to difficult to even remember and live mentally in that place. But you are not asked to live there, you are sent. At times, and sometimes a progression of being helpless and watch those experiences bite away at your life, consuming you, until you live in the darkness. I didn’t understand those who died saying ‘no’. But I understand now.

You either say 'no' or decide what one is willing to do, to endure, to be shamed to yourself and others, in order to survive. As long as society acts how it does, living with a chronic or terminal disease/disability then there will be not just ‘a darkness’ but your darkness.

What do you fear?

Junior High? High School?

I have been bullied by careworkers, by managers, by doctors, and every time knowing there is no place to appeal, the college of physicians complaint person said about a human rights violation, “It’s not they left an instrument or towel in you.” No, they humiliated me and enjoyed, they told me they were doing this because I was different, because I questioned, because I talked back, or just the rightous anger of demonizing or the sly smile of enjoyment. And so, like junior high or high school, the bullying comes back.

For those of the Trevor Project, the ‘It gets better’ projects: sometimes it doesn’t. So if you want to change society, change both ends.

My partner and I have both experienced systematic and regular discrimination. Not abstract discrimination but discrimination that risks my health, my life, whether that is putting me in an ambulance and refusing to take me to the hospital, but catch up on paperwork, using my body as a table, or the care worker telling me that there are no such things as ‘hate crimes’ in the apartment the manager tried to drive us from because ‘married couple’ advertised didn’t mean US.

Now I need protection, for when I am the most helpless? I know enough to say ‘caregiver’ when they ask about Linda not 'spouse', like back a few years when the attacks on us, our car, our apartment, assault on us both, more and more on me, until the police had to protect. When you are circled in your parked car by drunks lads screaming insults, when people stop you to hit you for existing, and you never see their face, then you believe in hate crimes. So when Linda isn’t allowed to the ER bed with a marriage certificate in one hand and ‘legal authority’ in the other, it isn’t a surprise.

“Monday: my money was taken.
Tuesday: names called.
Wednesday: my uniform torn.
Thursday: my body pouring with blood.
Friday: it's ended.
Saturday: freedom.
The final diary pages of 13-year-old Vijay Singh. He was found hanging from the banister rail at his home on Sunday.”
When it hurts so bad, when I am scared, when Linda and I disagree and I worry what will happen when she leaves. Because everyone leaves. Many People say ‘love’ and ‘stay’ but new jobs, boyfriends/girlfriends, lives move on and at the end, it is hard to see this 'love' when thing are hard (they are hard now). Love is tangible. It is the hand I hold when I cannot see but am trying to not scream. It is the torso I lean against when struggling to breathe. It is not passive, it is active, seeking ways to care, to protect, to give hope.
For the Christians: “If anyone says, "I love God," yet hates his brother, he is a liar. For anyone who does not love his (fellow human), whom he has seen, cannot love God, whom he has not seen”

From the Holy Qur’an: “And what will explain to you what the steep path is? It is the freeing of a (slave) from bondage; or the giving of food in a day of famine to an orphan relative, or to a needy in distress” Chapter 90, Verses 12-17
I know there is opposition still organizationally, more happened on Friday, and Wednesday before that. I try to fight but I can’t overcome the fatigue. Then the pain when someone I care about writes, “Oh, you still wrote me, got a postcard! Golly, still here?” A reduction of effort of living and reaching out to amused surprise, an afterthought. Yeah still here, where are you? I know that the humiliation from junior and high school will continue, the endless days when there is no friend and no teacher who notices, or cares.

“To wake up each day knowing that you have to go to school, knowing there's no way of avoiding it, knowing that the moment you set out for school the bullies are there, waiting for you to arrive, waiting to call you names, to tease you, torment you, humiliate and mock you, embarrass you in front of friends, push you, punch you, slap you, pinch you, spit on you, kick you, and ... you daren't think about the rest, or the possible consequences.” (From Bullyside)
The very people who decide how much care you get are the very people who haven’t experienced what you are going through. They don’t judge your illness, they judge YOU.

Recognize below, these attitudes in a doctor, this medical insurance ‘service consultant’, this care manager, this facility care coordinator?

Need for absolute Power, Control, Domination and Subjugation.

That’s from a book on Sociopaths and Bullies.

Disability bullying includes behaviours such as: leaving someone out or treating them badly because of a disability, making someone feel uncomfortable because of a disability, or making comments or jokes to hurt someone with a disability.

Bullying is a form of aggression used from a position of power
Advantage in size, age, strength, intelligence, (or perceived authority), .
Advantage in social status with peers (being excluded, left out)
Knowledge of another's vulnerability and using that knowledge to cause distress.
Membership in a dominant group in society and using that power against members of a less dominant group in the forms of racism, sexism, homophobia, and classicism.

If you have a disability and don’t recognize each of those, then you are a fortunate individual. Perhaps you think it just me, that I have some ‘complex’, or a 'issue': there is the thread from allnurses about the academic journal article on doctors as bullies. The independent Joint Committee studied 1,500 hospitals and issued a safety alert on bullying doctors: “Outbursts and condescending language threaten patient safety”. A study on elder and disabled abuse found females most likely targets of abuse including emotional abuse and ‘passive neglect’. The numbers of abuse doubled in the 10 years between studies. So me, and..the couple hundred thousands in various studies.

“The tongue like a sharp knife... Kills without drawing blood.”
Buddha


When you are judged for having your disease, particularly for invisible and pain illnesses, being treated like it is a choice from relatives to doctors is common. Facing the blame, the accusations and the guilt wears a person out. I know, listening to people talk about someone with extreme depression on how ‘They just don’t try’, ‘They don’t stick with things.’, 'If they just gave it their all", the comments about CFS/ME, and fibro, “It is so hard to schedule anything with you, there is always some (quotes are used here with hands) ‘sickness’”, “Oh you are tired? Well I get tired too taking care of a family.” Lashing out during a bad day relieves stress for five minutes for an able bodied person and is a sentence remembered for the next YEARS by the person on the receiving end.

Sticks and stones I can endure, but words have always hurt us. Always

Over 4,200 children in the UK in one year attempted suicide. Abuse, sexual abuse accounts for 1/3rd according to one study and 47% due to bullying from a study of an anti-bullying charity. One child attempts suicide every 30 minutes. It is the number 1 cause of death for those 14-18.

Hearing those numbers the Health Minister said, “'Having good mental health enables young people to make the most of their opportunities.’
I howl inside when a Health minister implies children trying to die is some sort of culling of the healthy from the unfit. Yes, running from people trying to throw you on a train track is an 'opportunity'! I did my fair share of running up and down apartment projects in LA.

Now, with the vascular dementia I have I have days where I am very literal. Literal. “Let’s fly out of here!” gets me looking for helicopters. While I react, I can’t help it. I know it is part of the disease. I try but I can’t help it. But it is the same face, same tone as the person who a few years ago could help it. So when I react, it is easy to forget and react back (and then I react). It is only a matter of time until people, even those who know how I will react, and how it will upset and hurt me will say in frustration what they feel, without censorship: ‘I felt like saying it!” And so when I see them again I am scared, I may not remember why, but I am scared because they hurt me. And if I remember, that might be all I remember for a long, long time. Why is accommodation to not emotionally injure another considered so onerous?

“I don't pretend to know what love is for everyone, but I can tell you what it is for me; love is knowing all about someone, and still wanting to be with them more than any other person, love is trusting them enough to tell them everything about yourself, including the things you might be ashamed of”
If you are reading this, I am trying to show my love to you.

Some days, with triggers and reactions, it just hurts. And I know that will likely get worse. I can’t expect much. So I look forward to the time when I don’t have to wait to forget. Then when they hurt me, they will hurt the mentally slow one, the one who can’t figure it out. I also know that I am lower than those who ‘learn how to accommodate me’… until they get frustrated. I know because they are the mirrors for my worth.

I hated the bullying at school, the hatred of those who were different in any way, the attacking of those who fought back just for fun. And how much of the day was dread. But I got through it. Vowed it would never be like that. And it wasn’t…until now.

Eighteen-year-old Ashton Larson and 19-year-old Brianna Broitzman are charged with the following nursing home abuse crimes:
 assault
 abuse of a vulnerable adult by a caregiver
 abuse of a vulnerable adult with sexual contact
 disorderly conduct
 failing to report suspected maltreatment

According to the criminal complaint, Larson and Broitzman spit in residents' mouths, groped genitals and breasts of some residents, and taunted other residents. Larson has admitted to getting into bed with a resident and making humping motions. She also acknowledged that she inserted her finger into a resident's rectum; she claimed that she was trying to initiate the resident's bowel movement, although this action is definitely not part of the job duties of an aide.

Larson also acknowledged that she patted the buttocks of another resident. Many of the nursing home residents have Alzheimer's disease and are unable to defend themselves…. The criminal complaint says that the group of aides gathered to "talk and laugh about the incidents."

Freeborn County Attorney Craig Nelson stated that Larson and Broitzman will probably receive only suspended jail sentences and probation for their actions”
Oh yeah, Dementia is a hoot, so is being so weak that even when you call for help, those are the people who are hurting you. I am terrified, absolute terrified of going into a home. Because I know my Nan was abused by neglect in a home in this home. Because the workers, the good ones say a name of a home and shudder, so do the people at the caregiver’s network.

A US national study of care homes found “results of this nationwide inspection found that 94 percent of for-profit facilities and 88 percent of nonprofit organizations received citations for non-compliance last year.”

Look on the bright side: hope that you and those you love are in the 5-6% of homes without patient abuse, malnutrition, patient neglect.

They want a rating system for nursing homes. I want a rating system for my managers, my doctors, my workers. I want a system where getting care or having an illness or disability doesn’t mean you fast-tracked from those who matter to those who don’t. One home in town was taken from VIHA due to the number of neglect deaths, but who is going to take it, when there is a monopoly of care?

This is part of the long dark night, and I think some expect me to write about the light, about how I see light ahead after this darkness.

I don’t.

We are the ones who are vulnerable, not the ones with power. We are the fatigued, and I have learned that trying to get culpability shown against an able bodied worker is almost impossible: they literally have five to ten to twenty times the time and energy and access I do. There is a thin white line and while people know this goes on, well, it isn’t that bad, or “I didn’t do it.” – except that knowing of a crime of abuse and failing to report it IS a crime.

"Children’s bodies aren’t like automobiles with the assailant’s fingerprints lingering on the wheel. The world of sexual abuse is quintessentially secret. It is the perfect crime."
I was 12, a child, and afterward I was something else. I knew, in the way one does, that I would be killed, if I didn’t do what they wanted, or scream in ways that pleased them. How big is an 18 year old to a 12 year old? How badly do we want them to like us? How badly do they terrify us?

I used to fear that the four men who sexually abused me night after night would come back. Because I didn't survive, they just got bored, they left.

I used to believe that I deserved it, that it was a test I failed and that the THING I had become, with my childhood locked away, and the hope in pleasing them, so that they wouldn’t hurt so bad this night was me stripped bare. The belief that I deserved it, knowing that is true, and the shame of knowing that and the terror.

A minimum of 15-25% of women and 10% of men will have had sexual, physical or other abuse in their lifetime. Yet, in my hundreds of tests, and over 50 doctors, I have never met one who ever acknowledged abuse as anything other than a reason for mental instability: a liar, or a reason to deny care or delay treatment. I survived, I came back and my parents later said that that I stopped smiling for a long time, and I was ‘different.’ That was after my clothes were cut off and the swelling went down enough to walk again. I lived in fear, until I faced it with therapy. But in a society where I the individual is less than the statistics, my voice had less importance than a doctor, his theory or a book or article just read: so I must have PTSD, or attention seeking, or conversion. This is common, particularly with invisible chronic illnesses.

A higher percentage of experience abuse, and higher percentage of women have chronic disease yet I haven’t found one doctor who knows what a ‘trigger’ was or cared: A panic attack is a sign of mental and moral weakness, and will delay treatment.

(A 'trigger' is an emotional or physical reaction to something connected to past abuse, physical or sexual. Triggers can range from smells or touch or being put in similar situations, even hearing similar sentences, or accents as an abuser. The past and present can become blurred as fear floods, and nightmares, and daymares (like daydreams, but as if you are THERE again) can linger for several days).

Several doctors asked if my mother was my sister, or if my parents were siblings, and what illegal drugs I was on, tested me for HIV monthly. I’ve been held down by assistants while the ‘specialist’ ran electricity through my body, making it arc and flop over and over and over again. I would not scream. They would not stop.

During one test I was told that no matter how loud I screamed, no one will hear me or come. Humiliation in one form or another is virtually a synonym for ‘medical interaction’.

Because many cannot or chose not to separate me from the disease, I am objectified into a symptom or group of symptoms and fail to be a person. So when the disease eludes them, surpasses their knowledge, they see it as an attack, and retaliate on what they can: the person who has the disease. This is not uncommon.

Sexual comments, sexual touching, comments inappropriate in society, in a workplace, in a public place: calling you a liar, an addict, a coward, accusing you of motives, desires, that would require proof…elsewhere. This is not uncommon, particularly to younger women. To be ordered to take off clothes with no explanation, or have a doctor touch you, lunge in and grab you, grab parts of you, grab sexual parts of you, knowing you have been abused is not uncommon experiences. ‘Here is your room, take off your clothes.” Is common, as is the doctor watching.

How do I clean myself from the shame? I swallow it and do what I must to survive.

I had an annual care review. My care had been cancelled for a week, which at my level (just below critical), cannot be cancelled. I was told that in most of these cases the client (me) is the problem, as the worker requests not to go. She has not followed up. Linda is unable to sleep longer than 95 minutes as she changes the ice I sleep on. But we are denied overnights until Linda finds a job. An RN to change my pain patches? Denied until Linda finds a job. It was not a review of how they could do better, help more, but how we should be more employed, and how I should be under someone’s control.

I know about control. Maybe being trained as a dog, then as relatives and strangers used to call me at three, "little robot" helped me survive. Maybe it helped break me.

Two of them tied me to the bed frame, while one took my glasses away and started moving his knife up to my neck and down my torso. The fourth watched. I hadn’t started crying until he was whispering in my ear the things he would do to me with his knife, he cut me and then said louder that he might be cutting for hours. I looked to the watcher, the leader, and my eyes showed him my fear and the promise that he could do anything to me if he cut loose. But he didn’t. And somewhere in there, I broke, and wept, no control over my bladder, with him pushing down on me, over my face, atop me and the bare skin constricted, and goosebumps tightened as the blade separated the flesh at the end of my ribs. The cuts and his body jabbed and jarred, hot ice and pain coming through the covering of self-loathing.

The crying made them excited; screams made them hard.

Now, with a body that will not answer me, and people who decide how much pain I endure, and I fall to the floor, lying until noticed. Screaming from pain in the bed, not knowing when it will end or lying fatigued, or paralyzed, unable to drink until someone helps. And if they are angry, they won’t.

The annual reviewer (who showed up for the first time in four years) wanted to chastise me. “Just tell me whatever it is you want,” I said, “Pride is the vanity of those who have more than survival.”

When did the shame stop meaning anything? Was it when I rolled on the floor, on my fluid and filth and it meant nothing? Or when I tried to kill myself and failed? Was that when I stopped praying? Am I describing my 'now' or back when I was raped?

Both.

So desperate, I just wanted to make them happy, I wanted them to like me. If they were happy it wouldn’t hurt so bad that night. I thought I left that horrid feeling behind me behind until I saw my 10th specialist, my third pain specialist. I would come home and sob as they touched, and told me how lazy I was, how stupid, had me remove clothes, mused to wonder on why I still was alive, but it wasn’t worth their time to investigate before walking out. That was those who didn't want to see my genitals, or grabbed my mouth, confirming that yes, I had the Marfans raised palette. I suppose that is the difference, the adult doctors know what they will do to you but just don’t care. Or maybe there isn't a difference. When I was child, they would keep at me, stripping me of innocence was such a pleasure, the fear they saw as I understood and they kept going until I sobbed, first the breaking gasp of despair until they finally got the guttural howl of an animal. We both thought I was broken.

How do I describe four years of degenerative neuropathy, organ function and increasing pain? Or the loss of insurance, and knowing that the basic medication could be taken away, my home to could be taken away, not like when I was homeless and fending by trading, by living in the woods and toilets of McDonalds and Donut places. Now I am helpless. So what do you want doc? A hand job? A blow job? More? I always believed deep down after those guys left, and I turned 13, that I was made for using. I kept at the therapists until I believed it was POSSIBLE that as I don't think people are born or meant just for using, that I might be a full person too: No longer to be objectified and reduced. I don’t think the therapists had been through the ‘medical grist mill’ (since none of the therapists I was referred to after the illness had a patient die on them, some leaned away from me).

I have three things about then which I don’t talk about. The first is how while at first I resisted, I didn’t after a while, no, I created fantasies, including the sadism, for the dominant leader who liked that, so he could play in my mind and on my body, hoping he would claim me as his own. Victims aren’t supposed to crawl to those who hurt and sexually abuse them. The second is that I wasn’t the first. There was an slightly older girl before me, gangly and full of the awkward, beautiful innocence of a newborn fawn. I know that I tried to encourage her. It isn't better with two, it is just less alone. It was before the veil of how ugly this was all going to be was pulled back. She wasn’t strong. Extreme fecal incontinence developed, maybe a defense, maybe stress or terror. And one day, when I woke, she was gone. She was going home, I was assured.

And so it was me.

Like the belief I would get out of this, I gave up on trying to pass whatever test God was giving me. I locked up all the parts of childhood in a steel box and buried them deep inside. I couldn’t afford a childhood, so I locked it up, and the me locked and buried and the cold and dead me both went insane. And that insanity comes back now, and I hate it and myself both.

Pain, and fever that can’t escape a body, paralysis and time makes for insanity too. It is easy to be the problem. Fatigue and illness ‘inconveniences’ everyone. Managers can’t understand why they can’t send a random temp worker to shower me, yet would be offended if I started roaming my hand around their breasts and into their groin. Ahhh, I should understand that like before we are different, what shames others is what I should be grateful for.

I used pace and stay up late looking over a city, to be the one that comes. Because even if it is in the mind, children make up someone who will come. We ALL call out for someone to come. But no one does.

"Isn't life beautiful"
Hemingway, before shooting himself.
So I strive until exhausted, empty and ill to convince someone that they deserve love. My life and experiences teach me that what I believe is not common, but maybe it will catch on. But I cannot ever believe in my heart that I was not born for suffering. Oh, I will continue sending postcards, cards and gifts. I have many, many moving boxes of gifts ready for the people who risks opening themselves to know me. Always the best, the rarest, because I have seen what it means to receive something and understand that the person cared enough, cared only about you.

And I accept that perhaps I was born to suffer. Self hatred and shame for existing are hard friends but ones that stay when all else leave.

Abused or ill, I am just meat now, and polluted meat at that.

Medical treatment, disability and chronic illness treatment don't have to be this traumatic, and alienating. And if you think, that because I share my story, that this is about just me, and not you, because you weren't abused, stop a second. You know that stats on physical abuse and sexual abuse. You know it isn't just me. Don't allow the 25% of those with Chronic, terminal illnesses and disabilities to be hurt and have the pain of past and present linked and merged just in order to ignore this, or me, because you end up ignoring them too.

No, don't read this and let the words pass by, or put on a game face: there is a host of people with so many voices, skills, vocations and talents they want to add to society who are excluded due to disability and illness, instead of included in the collective voice by accomodation, protected as equals. With the unemployment percentages five to ten times the national level for the disabled, the integration of services and assistance still waiting and the laws and views of disability and elder abuse as a 'victimless crime' if you are part of the society and aren't acting to change that: welcome to shame.

I love you, as much as I find your actions, or lack thereof, a disappointment. If that bothers you? CHANGE! Hold yourself to a higher standard, I assure there is always a way to hold ourselves to a higher standard. And I've yet to find it a bad thing.

Tuesday, December 14, 2010

"Challenge on Earth": I don't want peace

I’d love to tell you I was away on some glamorous assignment, or dangerous one. But I wasn’t. I had been invited to a concert and I couldn’t go. Linda decided that we should go out to dinner to make up for that, with coupons we had from some time ago…but I couldn’t go. I did make it to the second farmers market this year, snuck it in. I guess there are the good days and nights and the bad ones.

I had a couple bad days, and one very, very bad night. I wish I knew how to describe a bad night; maybe like when you got food poisoning, that feeling before everything came out and you started feeling better. The knowledge that something is wrong in the body and for me, I have to hope that sleeping helps it, because being super-hot without sweating and a heart rate over 100, isn’t something a hospital can fix. It causes some suffering, and a lot of paralysis, so much paralysis these last few days, but it just is what is.

Bad days means the pain breaks through, or it hurts so bad I cry, or snap. It means I don’t know really much of anything, including what happened a few hours ago, but I try to be in the now and here and figure out how to help, if that is what needs doing. I don’t recognize anyone but Linda, and I just hurt, sometimes when waves of grey like concrete dripping and solidifying off my bones makes leaning against the wall all that I can do.
The minutes, the days, are what I said to Linda were what people say, just spending time together. Linda has an idea to put something on Amazon toy section and it sells in a day, I put something on and it sells in a day. It is electronic money and not ‘real’ but then what is ‘real’. Linda says not to worry, she ordered some pills this week, and I guess that means something. It means don’t worry. I try to figure out what day it is and when Christmas is, since I am still building up to Halloween. For me, I think it will be a Jan. Xmas, as I send out presents as I can, both in matching them up and writing. I look at the window and wonder if I will live to remember what the outside looks like.

It is raining, and I am scared when it rains. I just don’t remember why.

Every night I thank Linda for taking care of me that day. It helps for me to remember and her to know that I appreciate it. Thank you, anyone reading this who has helped me, or been there for me, or helped Linda, because I’ve learned that being alone and ill is really hard.

I have ideas, between the moments of pain in the bed. Ideas on how to start a business, or how to reach the people who are inside, and have no contact with others, wild ideas, ideas I wish I had the energy and hours and days to do. I had a dream of learning a sport with a long pole and a double blade at the end, it is sort of ‘neuropathy epee’ as you do rotations, and in a swing, try to peg the blade through the other person’s foot (they have special shoes). I wear a kimono with the long sleeves in this sport and I really enjoy it. I am learning very quickly and this annoys those who have been there for a while. I don’t understand the frustration people who must in their heart know it is a hobby have toward those who hunger to learn everything. I was smiling that wide grin, and I practiced and practiced with the blades between club meetings. I couldn’t get enough. It is the first positive dream I have had in three years, Linda said.

If there is something after this, some after-life: I hope I get to challenge myself, because that is what true joy is for me. I realize now why I never had peace. I thought I was cursed, to be like a mythic figure who is denied peace in the heart. But for me, to risk and challenge myself in every way, to focus my entire being within the limitations, seeking and learning new ways of excelling, in pain, with new callous’ or bleeding, that is what gives me joy. I don’t want peace anymore. I want to try, and fail and try again.

Not really the statement someone who has so much medication attention should be wishing. But I do, because failing, and getting hurt is part of being open to change, and challenging myself, completely, requires change. Here is to ‘change and challenge on earth’ instead of peace this season, at least for those of us who need it, and keep nudging the systems to show that things can be done better.

Thursday, December 09, 2010

Disabled Female Equality means orgasms, masturbation and sex

Disabled women and teen girls need orgasms too!
Female equality means masturbation and orgasms, because though 50% of women report feeling guilt over masturbating, while the Surgeon General was fired 15 years ago by suggesting masturbation was okay to do and it is a mere 10 years ago when research even started to quantify the female orgasm (about 140 years after the male studies). That's the bad: BUT, the two words that three out of four women picked in a 2002 study for masturbation were in order: ‘Incredible’ and ‘Powerful’ While the word chosen to describe an orgasm with a partner: ‘euphoric’.(four out of five guys described orgasms as ‘Shooting’ followed by ‘Shuddering’).

So with Xmas coming, snow falling, people driving erratic and competitive, weather making joints ache, relatives and others making the head and shoulders ache, and all the worries of getting everything done, and ready in time doesn’t a bit of ‘Incredible’ and ‘Euphoric’ sound good? Best of all, it’s not just free, it is good for you and what ails you! And women have five different types of orgasms.
An study found that an orgasm can relieve the pain of 47.4% of women having a migraine (Evans & Couch, 2001). Not only does orgasm relieve the pain faster than any medication but the largest group in the study found it relieved ALL migraine pain.

Plus, the Royal Edinburgh Hospital found that for women 40+ who had one or two orgasms looked on average at least 10 years younger. Seriously.

We know that female masturbation and sex can help with insomnia, by creating a cardio experience followed by relaxation of muscles and endorphins, the same things which can help with PMS pain. In order to help release pain, which is of high interest to those with chronic conditions with pain, using clitoris training of deep rapid breaths during clitoris stimulation, along with mental practice can release pain and tension and tell the body that pain is actually intense pleasure.

But with so few studies on female masturbation benefits, word of mouth often precedes the ‘science’, and studies of masturbation and sex benefits for women with disabilities or illness are few if any. For example in 2009, the National Institute of Health invested only 2/10th of 1%: $65 million for ANY studies on the top six chronic pain conditions: chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular (TMJ) disorders and vulvodynia. And sex research didn't make the list. You can compare that amount to the 1.7 billion spent on research regarding drug abuse. While socially we are taught that women suffer, and should do so in silence. But that’s not equality, or even good science, but lack of research and indifference.

What exactly does this have to do with me? Well, I have been studying using mental stimulation and secondary erogenous zones in regards to masturbation, sex and female neuropathy. You may remember my post Swimming with Dolphins: a disabled girls guide to vibrators. That was for fatigue chronic conditions and masturbation.

But now that I have significant decreased sensation I want to find out if masturbation has relaxation and pain reduction benefits in clitoral/vaginal but also for those with very limited or no sensation. The Christopher Reeve foundation has done some limited research on this, but focusing on traditional sexuality expectations (sex with a partner, a heterosexual ‘vanilla’ experience and vaginal/pelvic sensations). They do have anecdotes about the ‘“phantom orgasm," through reassignment of sexual response to areas of the body unaffected by the injury. This is described as a pleasurable, fantasized orgasm that mentally intensifies an existing sensation.’

The reality is less women with long term chronic conditions/SCI’s and illness are going to have sexual partners. The typical sexual hetero experience, or waiting for one isn’t always or often enough to bring sexual pleasure equality to disabled females. What they describe as ‘phantom orgasm’ is pretty much what I have been and am trying to experiment with: masturbation using mental stimulation for arousal and secondary erogenous sites (ear lobes, breasts, nape of the neck, etc) to achieve full and then multiple orgasms. Hey, it is a hard job but this brave researcher has volunteered to do it!

I have had success (repeated success!) with mental stimulation (books primarily) combined with minimal body motion, as well as Eroge (erogenous computer or station games which combine professional voice acting with erotic images but not what would be seen as ‘dirty’) which is mental with visual and auditory but in the powerchair: no body motion. I am not yet done that research or interviews enough for a full report and write up, plus I want to try different Eroge and also find what is available (there are lesbian Eroge availabe, as well as hetero).

I was approached by a sexual aid company as I have been before to see if I wanted to test and or review their products. I explained that I was only interested in regards to disability related masturbation or couples play, using ‘above the waist’ items. I was offered ball gags and nipple clamps. I explained that ball gags for people with decreased breathing capacity (like me) and as masturbation aid, I couldn’t see it as an easy choice. There was the same with the problems of neuropathy and nipple clamps (my skin tears easier, but I can’t feel it tearing, see the problem!), although the feather stimulation clamps were something to consider later (that would be Linda's eyes bugging out reading this).
We found common ground with a warming, stimulation breast massage gel. They have sent the product and I will try and report on how using primary mental stimulation to arouse the breasts, then application with the gel, if this make this a good product for disabled women to masturbate: particularly those with neuropathy, fatigue, SCI and limited mobility. Full report in two weeks.

But beyond recommending masturbating (it’s good for you!), if anyone has already found techniques that work particularly with fatigue, limited mobility or neuropathy or with your female pain or disability condition be it chronic fatigue syndrome, endometriosis, fibromyalgia, EDS (are dislocations a problem when masturbating?), MS and others.

Okay, that was supposed to be short and funny but ended with factual and focused. That works too.

Tuesday, December 07, 2010

World Peace and painkillers, plus my junkie arms and firm medical breasts

What do I want for Xmas? Why world peace and free painkillers for all in need of course.

I’m serious, since the doctor has altered and increased my dosage for the 3rd time in two months, we are in fiscal fear. I am having an last ebay auction of manga here, sets complete and rare, some yaoi and some stuff I have been holding onto like signed books, and cult sets that cost a couple hundred to buy they are so out of print. It ends Sunday so the manga can be posted and received before Xmas. Money is used for 1) Rent, 2) Medicine, 3) Drugs, then if there is some left, a night’s room in Seattle to go to Sakura-con. But will see. No more ebay sales until at least March or April if I am able.

I gave blood a couple days ago. The bad news is every single vein blew (the vein walls are weak), making all these nice round blood eruptions dotting all over the inside of my elbow giving me the drug addict look from 60 yards away. You can see how the branches of veins from the injection site, a wall blew on the vein, to the left, the right, below and above the injection. After the spurt which caused the 'needle injection infection' look, you can see the yellow of pooled blood under the skin. I told Linda I was coming in to the study to inject my next 'fix' into my eyeball or between my toes since right now all my arms are blown. That was a joke (the drugs part). What is more worrisome is where are they going to get blood next time? My other arm does not have a strong vein. Guess stuff changed in the months since the last blood tests.

I had some medical reactions from drug combos which had caused me to sleep and only be awake about eight hours a day. Now I am slowly getting better but the cell degeneration in my body is worse, as is the crazy Edema. I went to the doctors, and he asked me to take off my shoes and socks. Linda helped and there was one foot so large that it was like a soccer ball on the end of my leg, and my ankle couldn’t bend but the other foot was perfectly normal.

“Did I mention how each side of my body has separate circulation?” I said as the neurologist looked and then started taking blood pressure readings from both arms. Scientific method, I like that. Except my exposed feet had totally black toes in 10 minutes, like the black you see on climbers up on Mt. Everest for days. BLACK.

“Um…yes….um…” the doctor said staring at them before asking me to “cover them up.”

Then he checked my heart beat by using his hand to move my bra aside and nestling his hand around my breast with the listening device right by my nipple. This was an unusual place to hear my heart, but must have given him some added advantage because he pushed the bra aside to get his hand on the breast, I mean, listen to my heart four times in all. VERY rigorous exam.

He wanted to know what I write about, and he talked about migraine research. I mentioned how orgasms are one of the top ways to reduce a migraine for females. Which which is why, with Xmas rush, and relatives, and all the pressure, the tension builds and honestly, frequent masturbation will keep you from frizzing out, or help.

"Masturbation!" He was outraged, "A waste of an woman's orgasm (with me around!), you know! Heh...heh!" No I didn't since he was (even Linda agrees) clearly over 70. Oh God, time to check my heart rate AGAIN? I didn't know my breast was so good at conducting sound since he had to move the scope to many different spots.

The good news is I didn’t need to stay in hospital and he is taking the case, plus he is friends with Dr. Sacks (of the guy who writes the book, and the movie Awakening is based on), so he likes the unusual cases and is going to see if he can find anything on mine.

The bad news is there is no way to get IVIG in BC. This is because a guy with a name like Barry or Larry controls who gets IVIG for the whole province and his ego is somehow tied in to making sure no one gets any. I had heard another neurologist say, “Barry would never approve it.” but didn’t know what he was talking about. Apparently much like censorship or rating film boards, Barry only likes to give IVIG to the candidates he was taught to give it to, about 15 years ago. Now, it is regularly given for autoimmune diseases including Lupus and Neuropathy and helps people keep working and just stops the progression – the wonder drug. I hear from a neurologist that one guy has neuropathy so bad that they are completely paralyzed and only his eyes can move, but Barry still won't approve the IVIG.

This idea depresses the neurologist so he goes back to my breast. I try to cheer him up by telling him that the neuropathy is affecting one eye, much like the circulation issue. This perks him up and he plays with the light in the eyes thing watching one move slower than the other.

I leave there and give the peds blood station the hello kitty band-aids I got when I ordered gifts from Japan. I seem addicted to ordering gifts only to realize that I don’t have anyone anymore to give them to. Which kinda sucks when I have Hello Kitty with her friend saying, “I love mushrooms” inside a giant mushroom as stationery (seriously, what is not to love about that irony!). Last time I gave all the Hello Kitty and Anime stationery to an orphanage. Oddly, most of the stuff I get goes up in price until it is stupid price valuable, but I’d rather give it away than sell it. I have several boxes of gifts to give away, including a puzzle for a space/shuttle affectiano but it sits waiting.

Peds love the band-aids and so next time I will bring in the Hello Kitty cold masks I have ordered for them also from Japan.So next time we can afford gas/petrol to drive to the hospital I am taking them, and they are really looking forward to them. Peds nurses are cool.

I end up missing my meds because I didn’t want to drink or take meds before the blood tests or neuro tests, so I miss three of the four heart pills. The delay in taking Lyrica for nerve and seizure disorders ends up with me having several seizures, which make me a bit ropa-dope. So later, very confused, and also with blue fingers, my Lifeline phone tells me “It is TIME to press your life line!” I do, and fail. And fail. I simply don’t have enough strength to press the button. The button is recessed so I am not able to push it down with my teeth. But I finally hit it.

“This is life line…do you have chest pain?”

Me (post seizure and brain of swiss cheese): “Yeah, I do, how did you know that? Is that why I had to call you?”

Lifeline: “Ms McClung, are you okay?”

Beth: “Probably not, I mean, do ‘okay’ people have their phones talk to them? Oh wait, look at that, my elbow is purple, that’s kinda odd.”

Lifeline: “Are you sweating?”

Me: “No, I don’t sweat, it is part of my ‘thing’”

Lifeline: “Are you clammy?”

Me: “Still don’t sweat. I do change different colors, kind of like those mood setting lamps they have in offices to sooth you.”

Lifeline: “I think you are in distress, do you want an ambulance?”

Me: “I don’t know. How do I know that? Didn’t you just ask the questions to figure that out?”

Linda takes the phone, after they keep asking me different questions and I am confused and it is 4 am and I keep saying, “I don’t KNOW.” Which is the truth, at this point, I don’t know if I am in South America, or if I am that assassin who slices off my marks’ heads and trades them in for $5,000. I don’t know why I have these alternate odd memories of being an assassin and working as a maid or setting up different hits and then taking off the head and double wrapping it in plastic inside a duffle bag. It is a pretty good job, actually. I get to do a lot of different jobs, though only for a week or so, waiting for the right time to take my mark down (steel stylus through the ribs into the heart and a little squiggle twist, just like they used to give for lobotomies – presto, one dead guy – now, time to take the head).

I pass out. Then there are guys standing there asking if I need an ambulance. I tell them that I told lifeline I didn’t know, and why did they send the ambulance? The senior guy calls off the REST, which is the second ambulance and the fire truck which are coming (to take bits of me?). We talk and I tell them what my blood pressure will be, and we talk about the local pyromaniac, and it turns out one of the Medics lived right down the street from him. I am not sure how much my neighbors enjoy this conversation at 4 am.

The next day I talked to Lifeline. A guy calls me. He wants me to use a box where there are straws and I need to puff and sip into them. This is because I have to push the button, which is recessed and I don’t have the strength to do it (either by biting, using my thumb knuckle or index finger of the right hand) normally much less after a seizure or during a stroke. I don’t think this is going to work, and ask: What do users with degenerative diseases do? He thinks they stay in bed and have the puff and sip box (larger than a box of cigarettes) by the bed. I do not want to spend days in bed. I cannot do as much as before but I can get out of bed, and wheel to the study. I can even get dressed and put on earrings, despite the knowledge I am not going out – this is the femme rebellion against an illness that steals life away: earrings, Satsuma Body Butter (Yum!), lip gloss, Linda braiding my hair and a push up bra.

I sleep a lot on Saturday, and on Sunday we get up early and match and stamp. I got to match from the three new postcard books I got from Amazon, and one from a Ghibli of Oga and other artist for Studio Ghibli (Totoro, Spirited Away, Howl’s moving Castle and others) shown in a limited exhibit. The exhibit had a special postcard set, I found a set online, waited for it to go on sale and bought it for $40 (16 postcards). Why? We need medicine and I spend $40 on 16 postcards and shipping from Japan. Because these were high quality art postcards from a great artist. This postcard of Porco Rosso, free in the sky ('A pig's gotta fly'),available no where else, which once sent I will likely never get or see again, if I can send this to the right person, just might make the difference between solitary sadness and the feeling of knowing that they are special, and will always be special. It is stupid isn’t it, to exchange food and a little more security this month for a belief that not just getting ‘a postcard’ but finding the RIGHT postcard for the right person can make a difference in how they feel, and feel about themselves.

I think some days that like Don Quixote, I have spent too much time in reading and believing that my mind had ‘dried up’ as I believe that all scullery maids are princess’. But I do believe. And while I often fail in matching the 'right' card at the right time, but when I do, it matters and I am, for a time, worthy to be living a life of service...for a time. So with Linda and Cheryl’s help, we matched postcards collected over the past two years, and stamped them,. I was in the study writing postcards for hours until they had to cool my spine. You see, the effort to write so much was overheating my spine with the amount of signals it took to try and move my hand for many hours (due to ‘dead end’ circuits, the body ends up sending huge amounts of signals in order to get one through, so that the hand and arm and fingers can move). I ended up passing out from the heat coming off of my spine, but they helped cool me and I continued. And over 60 postcards get sent out that night.That was a good thing. I hope the postcards will help people at Xmas time, which can be a lonely time.

Saturday is punky, my face is grey says Linda. I have conversations in bed but can’t see. Typical. This pisses me off, so when I do see I try to go for a walk (the nature of not feeling means no matter how high the blood pressure, heart beat or lung pain, I don’t feel it, or my feet or ankles, so I use a walking stick and sort of bounce around, leaning up against things. I make it outside purely on adrenaline, because truth be told, I am having my period and so is Linda and so emotions are high (like how C-4 sometimes goes ‘bang’ high). Whoever said women shouldn’t be president due to periods is WAY off, as only some/few women (like me) want to kill people and only on one or two days a month, as opposed to an entire government department of guys dedicated to war.

I pass out, or so the stains on my clothes tell me. I keep losing consciousness but Linda and 15 strangers offer to help, I think 14 of the strangers think I am drunk and passed out. I have several small seizures. This only adds to the ‘drunk woman’ look. I hope this means more people will talk to me in the future, as drunk and passed out is far friendlier than scary disease woman. Somehow, I end up at Starbucks. Starbucks is much like going to the hospital: I sit in the wheelchair that arrived with Cheryl and they stop me falling out of it until I can talk again and there are machine noises and beeping. I decide to steal the chocolate bits out of the top of Linda’s Hot chocolate and miss, ending up with whip cream all over my face, having totally dunked myself in her cup. I am sure this will add to my ‘drunk’ rep.

Some readers think that I am an attention seeking addict. I know this from the various comments which are left anon about me getting a ‘fix’ and such. Ironically, these are people I have probably worked through the night to send postcards to, and still do. (sarcasm) Yes, I am an attention seeking drug addict, who is only awake a few hours a day, never gets to go out, has the windows covered to keep out the construction noise – I find spending my time indoors talking to no one the best way to get attention. And the patches work great, except that they leave burn/blister marks where I have them, so my arms and back are covered with those.

The doctor I have treats cancer patients and other late stage/pallative patients. I think those who judge me as some sort of drug junkie would see all of his patients, those dying of cancer as ‘addicts’ or ‘getting our fix’. If someone really has the time to believe or worry about such things, that after two years the desire to not be in pain=drug addict. Because apparently the idea is I could hand my medical file to a doctor (in a city where waiting lists to have a GP are in the hundreds PER GP), have him examine me for 40-50 minutes for four times and each time he up my pain medication, even over my protests the last two times just because I just tell him, ‘gosh my back hurts’ (I don’t tell him that, I tell him about waking up with my teeth clenched so hard that they make cracking noises like ice, but only because he asked, and he nodded as this is something he has seen before, this pain symptom). He is an odd doctor, I explained how I am used to being in pain and now that I can see straight instead of through the red filter of pain haze where no jokes ever make it through (I laughed on Friday, almost hysterically, I haven’t done that in two years). He keeps trying for me to not be in pain. What a strange doctor.

The Fentynal is supposed to be on Pharmacare, but the doctor said that they will take months of tossing it back and forth. I didn’t believe it but Linda said it is true, as he sent in the form right away (a Pharmacare exemption). After a month they told him they needed a detail about if I had tried codine. I had, and he sent it back the next day. Three months later. He says if they keep sending it back asking for details each time, then it never gets an exemption. Even if it does, they never pay back the costs of the Fentynal you buy while waiting for them to decide. You can’t apply if you haven’t bought and are using the patches. Cancer patient often die before they get the exemption. It is a cost cutting game. People lose, but the government wins in saving money. Sad.

I have learned that I really only understand three time periods: Before (when I can remember things from being able bodied), ‘What I know’ which is either all yesterday or this morning, and NOW. So everything that is told me that I remember about costs, or problems covering pill costs, or medication costs, or food costs, it is all in the ‘What I know’ and I feel it all like it was told to me this morning. I do not know that one financial problem may have been told to me six months ago and another last week. I just know them all in ‘What I know.” And I try to figure out how to get a job. I kinda hate NOW because it is filled mostly with money stuff related to medical costs from ‘What I know’. We can’t afford batteries, we can’t afford the phone, we can’t afford condiments for food, we can’t afford multivitamins anymore, we can’t afford the pill, which was keepin Linda and I regular and also lessened mood swings. Because we are married to each other, we can’t get them for free, indeed it is really expensive. We can’t afford the B-12 I need, but it was a gift (thank you). We can’t afford the vitamin D and the Fish oil (to make my veins stronger to stop them from bleeding out all over like mine did. I want beef jerky for Xmas, because I can’t afford that either. We can’t afford hair cuts, and mine has tangles which will serve as nests for small birds come spring time.

This is why ‘NOW’ sucks and why a doctor talking about extending my life depresses me. I am supposed to be happy when all I think of all day is how, on Fentynal, tramacet, tramadot, Lyrica, pot, codeine and aspirin with tension every week the rent is due eating stuff from the freezer, and the dinner of rice crispy squares I had tonight (go rice crispies!) and soup last night. All the tension Linda has had about money from the last year I remember in a big BLAMMO, like it happened an hour ago. I have that memory and feeling every day, every morning and afternoon. I just want us to be able to be as well off as when we were students for over 10 years, and could have a pizza every now and then. Back then I would work an extra job, until I had 2 or 3 or 4 jobs if needed. Now if we have a pizza, that means no thyroid medication for a month. Just a life where I can live peacefully, with caregivers (Linda is meeting with the manager as I am being moved to ‘critical’ in care), while Linda job hunts and then we spend evenings together.

Linda said she is going to write a blog post on Girl’s Gotta Fly so check that out tomorrow. If would like stuff, please let me know, because the problem when I don’t hear from about 50+ people in months is that it really limits my gift giving, which sucks. I buy the gift, then Linda reminds me that we haven’t heard from them in a year or two.

I got Linda her music box from Kiki's Delivery Service, and she liked it, though it wasn’t Xmas yet, it had been a rough week and I wanted her to know that I love her. And now I make sure to thank her each night: "Thank you for taking care of me today." It matters, what she does.


And Cheryl, I gave her one of her presents (Linda has another one coming, so does Cheryl – I got them when I had money from the last manga sale). Know a person and you know the present. Cheryl likes guns, and while buying her an actual GUN collection would be difficult and illegal in Canada, I was able to get her mini-replica guns from a Japanese Hobby store where you can add clips and scopes to the six to ten different assault weapons (including a AK-47). Cheryl was very happy, “Oh a blah blah automatic SLR with grenade launcher! It has been years since I shot one of these..” Cheryl reminisced.

I thought, and hoped, she was joking. I know she was a law enforcement ranger and ‘secured’ facilities after 9/11 but a GRENADE LAUNCHER? No, she wasn’t joking. Turns out some law enforcement people like to collect guns, and shoot them – imagine that. She like them. That made both of us happy. I imagine maybe Xena warrior princess is now sporting an assault weapon, but I certainly hope the figurine character from Yotsuba!! Isn’t playing with guns, no no, leave the AK-47 for Hello Kitty! As my grandfather used to say, “Guns aren’t a toy. You could seriously hurt someone. That’s why you have to be 10 or 11 at least before you shoot one.”

But honestly, for Xmas, besides world peace, what I would love for Xmas is home stability – so Linda doesn’t have to try and do everything on her own: for example, a couple someone’s to help pay for the Lyrica, which has to be ordered every 2 months. Without it, I have, on average, 15 seizures a day and nerve pain. Which isn’t the ‘good workout’ pain. Some to help pay for Linda’s anti-depressant and anxiety med (when your caregiver, who has 4 of the top 5 stresses possible outside of war going all the time and she DOESN’T have her meds, it is very scary for the helpless person). And help to pay my OCD and anti-depressant med (it took me 8 years to find the right one, and without it, well, I start stabbing things through myself, or I did before – it is for people resistant for SSI) which is ordered every months or so here - I used to take 4 mg, I am not sure what Linda gives me now, I think it might be 6 mg or 8 mg under doctor’s prescription – on a side note, it has been found helpful to reduce pain in over 45% of people with fibro. Also the patches, which I am not sure how much they are, but Linda would (her email is Linda.mcclung at shaw.ca), as the doctor changed the frequency from 3 days to 2 days, meaning a 50% jump in the amount of patches we need for a single month.

Am I embarrassed to say, “If you want to give an Xmas gift, please give pain pills or anti-depressants, as the thyroid med is covered by Pharma-care.” Sure. But having a life where I and thus Linda think about his and only this from morning until night sucks worse. There are lots of stuff we could do with apple juice and cinnamon and cloves. Or watch movies from the library.

If you do buy a Xmas gift, or set up with Linda to help sponsor a medicine, please let her know YOUR address, so I can send you a present. I send presents not just because it is bonding or polite (though it is) but because I want things to be where they can be happy, with caring people.

Linda is here, so much for a short little update.

Wednesday, December 01, 2010

A music video for ALL: to those who are there all times

You will need to listen and watch this video a couple times. The words matter. It is one of the videos I wanted to make, this is what I can do now, which is better than to not do at all.

I had wanted to thank Linda and Cheryl with Like a Ghost by Glass Pear. The words, both melancholy and a stripping away of masks showed me how over the years, there have been two pairs of hands physically holding me and helping me. Because of them, I was able to truly LIVE. They understood what it meant for me to hike the rainforests, see the beaches, and ignore the danger signs. Taking risks was a gift they gave me. Linda said watching it, “You have a luminous beauty, but it is because of how ill you are. People can’t live, looking that gaunt, for long.”

I sought to show the face I see when I wake up from passing out, and who gets me to places where I can dance, box, play badminton, and hike over impossible obstacles of roots and rocks. And who helps me demonstate the love I have for her and so many.

It is about them, but because the voice of the singer became my voice, the video is speaking for me, about me. When I write that I am alone it is not to insult or accuse, but to share my feelings and exeperience: what my daily living and emotions are like. The number of people most individuals are greeted by in a day of work, going home, out for dinner, meeting with friends. To see and interact with the people others see in a single day, now, in my condition, it might take up to a year. It isn’t pity, or accusation, but part of what is happening to me, just as Linda observed how people avoid taking pictures of themselves when they are ill. As the video progresses and I go deeper into the experiences of disease and survival, Linda and Cheryl were who were, in all physical states, watching over and who, with others, gave me the gift of a mental and physical space for joy and the assistance to fight back, in attitude from sticking my tongue out, to action (funds gifted I spend on the wooden stamps in the picture, on travel costs, on showing love back). I will never be able to repay Linda or Cheryl in the life they sacrificed in giving/gave to me. They do less, have less so that I can do more, have more, try more, risk more: and they do it knowing that I will die. There is no 'investment return' to this, just being there. I can only hope they understand the love I have for them for joining me on every adventure.

The video show how people go, and they have, those who wrote me and write no more, who promised to be there to the end and then moved on. I needed affection and interaction but the friends I have aren’t human. Linda and Cheryl saw that desperatation to give and receive love and so I have cats, and squirrels.

“Where can I put my faith?” the song asks and it is a question, the daily question, as my helplessness grows, makes life like lying on melting ice over deep and dark water. And so my fear grows. Linda watches and wonders what I have secretly wondered, 'how can I be so open, and give so freely of my heart and my life; to be hurt so often, in physical pain always and yet go on?' Go on when so little of thelove is returned?

If I am a light, or I have love, it is because, like our sun, I am literally burning my own core to make it (or as I start to sputter out, Linda, Cheryl or others at times pour a bit of their heart into mine).

In the last scene I am lying on the floor. I told Linda that in one way it is about fighting, but in another, it is saying, I have fought, and fought, and tried as hard as I can, and I can’t anymore. When you look at the picture you will see I have nothing left. Linda said, “And you are alone.”, noting the room and thinking of this last week. The song says, “If you are real, show me now who you are..”

I have had joy, and risk, and falls, and contentment, and now, with minimal energy (yesterday it took 48 minutes to pee) as part of what seems a withering decline the song articulates for me, “How can I love without grace?” All those individuals, whose voices are now silent, not five, or ten, or a dozen, or a score, but dozens and dozens, of those who I love and yet, in some way, I was not enough for them to keep caring back. With Linda we sort and remember how that this person loves that, and that person loves this and all special things found and given and all we shared, emails, pictures and letters and now there is a descended silence. I love them still, but wonder happened, or what I did to make me untouchable? I lie exhausted from struggling, and alone. I thought, that maybe there were some who, as I changed, didn’t know what to do, how to respond, and moved, like my parents, to what is a safe distance for them. Three have said they can’t stand to watch what is happening and going to happen: watching the pain hurts them too much. There are those who have shown love far beyond what I deserve, and those, heroic, who watch and stay in spite of the fear, of mortality displayed. But those silent individuals, I miss them, I long for them and the connection that...stopped.

That may be heard as accusations, but please see that with my words I am only trying to say this: I am scared, so scared, and alone. I fight every day, alone, and often long into the night. I am on six pain medications and I don’t see how much longer my body can hold up. I do sit ups and push ups and I fight how I can and when I can but…..will there be love? Can I believe in more than pain and that aching longing in these dark days of fatigue, exhaustion? I acted believing that love, that family, that commitment, that caring showed in ways that exposed me, left me vulnerable would help others to hold my hand, face their inner fears and battles to be here.

My rabbit Eiki Eiki I hold is one Linda bought for me on a 'Tender Love' day, Disability Dax, who tries hard but is not always that adept is me, but he has an exposed heart: I got him to remind me that 'heart' always trumps 'do'. Miko, my uke cat who is always at hand in my bed was given by Wendryn, and Raccoon’s Catbus takes me on adventures in my dreams. And above me in bed, on a shelf, peeking over, is a cat named Pounce from Cheryl, ready to jump. When I am at the computer, watching a good show, Rabid, my large hand sized plush squirrel from Raccoon loves to watch TV too, and is there to hold in the tense parts. Otto the Otter from Susan guards the living room couch, where I am move to when Cheryl comes. These are the ones who watch over me, who know me, and I know them.

I am embarressed to say I did not want to publicly thank these because others might feel bad. Yet these are the one who see me, meet with me, take my calls and emails. I say that because now is when that matters: so ill and in fear, I am a child again and these plushies are the comfort I have in this new world I don’t know. Some hours and days it is like when I used to wait for my father footsteps returning from work, all I can do is hope. With these 'friends' I hang on and wait, so that during a 'good hour', or 'good day', I can be more, but sending postcards, or gifts, or emails, or blog posts is only possible because I have been able to hold on. Now you know how I hold on, and with who.