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.

How does a hero live? Die? and Fight?

I didn’t go away. I just found that I was the passenger, not the driver anymore when it came to my body. That kind of sucks.

I am going to blog as often as a can, many times a week, once a week. As often as I can, but then, every day for many days we have had to make calls, stop calls, decide 911….every day.

I need to get stronger. Not just because I spent most of a very small inheritance on gifts (for family, and online friends). If you haven’t gotten any it is either because a) I had a grand mal/small stroke and don’t know you as that part of my brain withered and died as it was crushed by a surge of electricity or blood (which is like battery acid to brain cells). b) I haven’t been able to afford to send your gift to you or heard from you to verify that like gifts/are a friend/do what friends do stuff.

I also got more things for the postcard project though as Linda says, “You have enough already for the rest of your life.” Yes, maybe, but like getting and wearing new clothes, it is fun to have new things to send, new stickers from Japan, new postcards from Germany, new stamps with pictures of the three of us, custom made, stickers of us, custom made. I guess those are gifts too, part to me and part to you.

I need to get stronger because in two weeks I am being transported to San Diego. I made a promise a year ago to go to the Eisner Awards if I was alive now. I made it. We are going by van. I sold my manga to fund my part. It seems that there is a belief among some (Cheryl, Linda, others) that I will die July 27-29th. I hope not.

At the neurologist, I found out that the neuropathy progresses, though how it progresses beyond ‘very damaged’ I would say I don’t know, except I do, since two neurologists have told me. I will lose more and more use of my arms until I won’t have use of them at all. Already I use my forearms more than my fingers: to scratch my nose, to pick up things, to catch things. The teeth are for opening things or positioning them. As Linda says, “I don’t know how it will be, but you will find a way and that will be how it is then.” I miss hands, and I will miss the limited use I have even more, if I can live through into the autumn.

Having the last aspects of hope shredded in front of me by specialist/doctor apathy and budget cuts, this body will continue, unattended, as I and others try to keep it going each day. I am a different person now, than I was. Being a passenger on your own body does that, as does pain that makes time stretch and bend, and hallucinations frequent. My dementia continues as seizures and heart, lung and conscious failures increases, and the heat accelerates and adds to all of it.

Having the last choices wrenched from me, I experience some peace for the first time in my life.
I was born and then taught to be a hero, to live the life of the hero. I think that much like adults who tell you not to smoke while puffing away no one ever expected me to actually BELIEVE. I was and am a ‘True Believer’. I remember my father telling me that we needed to live a perfect life like Jesus but we would fail and like all humans need God’s sacrifice to ‘atone’ for us. I was young, but raised scientifically (at school I used anatomical names for everything including raising my hand in order ‘to defecate’ or ‘urinate’ in first grade, much to the horror of the teacher and principal who eventually got me to say I needed ‘to go’ as I wouldn’t say ‘I need the girl’s room’, I told the principal plainly, “No, I need to empty the urine out of my bladder, which room is social acceptability”) so I said, “No one has lead the perfect life YET.”

My father said, “No, but if everyone, all billions have tried then ALL fail….”

“But it is theoretically possible, right?”

My father thought a long time and said yes, it was. And I believed him. And since that moment held myself to that standard, which I failed (at perfection), but I strove to attain it. The neurologist asked about my cut scars and I said, “I am an extreme Type A, and I expect perfection, and dislike failing and when overcome I write my failures where they can be seen.” We then talked about the high incidence of self destructive counter-coping behaviors among student doctors. But as I was leaving he said that due to my sexual abuse and open self harm, the other (male) doctors had withdrawn treatment. That I had not been treated or even taken as a patient by doctors and specialists for YEARS not because of the science of my disease but because of “your deep emotional complexity”. I felt physically as if he had kicked me across the room, my gut hurt so bad. I later decided to ask him if he would write that out, and if he would, I was going to start a suit against the government of Canada that medical treatment for chronic and other conditions should be given REGARDLESS of sexual abuse, emotional abuse or other patient history.

To be told that I was like the AIDS patient in Texas who had been put in a room, given water and no treatment because….of who they WERE, of what they HAD, until they died, it was crushing. It turns out that those four young males who had marked my body and mind still marked me in a way where treatment to me and others with abuse was delayed, or denied, that male doctors were continuing what the abusers loved most of all, the power to hurt me. Sexual abuse isn’t about sex, but power, domination, and establishing that they are dominant (Sounds like Medical Specialist but sexual abusers take it to the next level). I thought I had cracked open and left that binding on my soul behind me, without knowing it was being passed in notes, like a class deciding who to bully, from one medical to another. In three years, all prescriptions, medical aid, home care and life quality has been given by female doctors.

I am learning how to fight in a different way. Fighting to keep my dignity as a human being, fighting to stay here. A very different type of heroics than I have had the rest of my life.

I had lived in an odd community where I was in a feudal system, and minor nobility, I was trained for court, I was trained BY the court, to serve at tables of royalty, to know etiquette, but most of all to know who you ARE: the unseen awaiting rulers. God was coming back and we were going to assume our roles over humanity, and so we should treat them as such now, and practice now. I don’t think they expected me to take them seriously. Or to link Jesus to the tales of the Knights, of the Round Table, that Jesus was the embodied noble, a servant to all. I would be a Hero of that court.
If something is 'right' (note, not if “I am right”), then regardless of the consequences TO ME (not ‘to others'), I must continue. That is how I lived, that and with the conviction that choice is the most sacred of what makes us divine. That those who desire to take choice: tyrants, abusers, despots – the are recognized as doing wrong. But in daily life, to refuse to sign a contract unless it is taken to a labour lawyer, or require management to sign the same one, leads to threats of job loss. I have lost my job over: gender equity, civil liberties, religious law and equality as well as almost losing five years of university. The bully cannot conceive of a person who will not be beaten down regardless of consequence, and who goes and gets an ombudsperson, or lawyer. To knowing participate in an act or the continuing of an act I know to be wrong is immoral. And I will not choose an immoral life simply for convenience. Nor will I allow those around me to take the choice away from those who are the most vulnerable. And I don’t give up.

Those actions makes those in authority really, REALLY angry. It also gets you labeled a lot of things, like ‘nutcase’ but then, as I told people, I am follower of Jesus (okay, I didn’t tell them Jesus, the knight errant or that I thought that Don Quixote should have continued to see a world of gold, and fought for that instead of living in a world of iron and steel).

This ‘Revolutionary Girl’ AMV embodies the type of hero I have tried to be, and have been, for Linda, for others.

To give some context Revolutionary Girl Utena, which deals with abuse, desire, gender roles and society was, even symbolically so effective that 1/3rd of it was banned for release in the US (including DVD). Utena is determined to be a ‘prince’ and dresses as such. She sees her classmate Anthy, who tends the roses, being physically and sexually abused by a male classmate and intervenes. She accepts a duel challenge and arrives with a bamboo blade only to find the male with a steel sword. The winner of the duel ‘owns’ the ‘Rose Bride’ (Anthy), which the student council who have rose rings, believes will lead them to power. Utena fights so that Anthy might make her own choices, and have that freedom: to choose either for good or ill, but her OWN choices.

Utena’s blade cut to almost nothing, she is told it is useless and to give up. A Prince does not give up, and so with six inches of bamboo against a steel rapier they charge (she gains the Rose Blade after this). Following her victory, many turn against Anthy, who is so used to abuse and being treated like an object that she has given up resisting. Utena finds her, breaks up those who have ripped up her dress, whips a tablecloth from a table and creates a simple roman style dress pinned with a rose. Utena then dances with Anthy, openly declaring their bond and they move to an abandoned housing building and live there on campus.

Sometimes to be a hero is to be against the system, and the actions of those in it. To be alone, fighting for just one person, a person who may decide to betray you, or refuse, at least for now, to leave that system. But the point of the hero is to give them that choice, that space where they are not an object, not abused, and able to grow…as a person. However, the abuse and anger they used to take out on Anthy is directed at the Utena, the Hero.


Linda and I decided a time ago that in order to make the most change in the world we needed to get inside the walls of decision making, to be INSIDE the World Trade Organization meetings rather than outside. Because of the 500 people inside the walls or the 25,000 protesting outside, to be one of the 500 could bring about positive effect to millions of people. Linda taught international business, we co-taught pink, green and grey markets. I did the research, and we worked together and decided together to move back to Canada (it was going to be the US but then ‘married gays are worst than terrorists’ election campaign made us rethink that – we already had experienced hate crimes, no need to seek out more). And then, in getting ill, I found that we had overlooked a huge percentage of vulnerable people. I faced that I had been a poor Guardian, a poor follower of Jesus.

How I had failed, and tried to redeem myself is summed up in Pumpkin Scissors. In the series Pumpkin Scissors, after the war, a unit is set up, small and originally for propaganda purposes, called Pumpkin Scissors – scissors to cut through the tough skin of war and corruption. They were to bring hope back to the people that reconstruction and equal justice would be for all. A small group of only six, they are lead by Alice Malvin, a noble who believes that justice and duty to ideals is more important than her sisters’ opinion that femininity is paramount. She leads the unit and while they are armed she usually only has a small short sword with the family crest. (a 34 second clip that will demonstrate exactly her personality).


The new addition, Randel, was part of the secret 901, the ‘will o the wisp’ anti-tank corp, who needed to have no fear of death in order to attack tanks with anti-tank guns while atop the tanks themselves. Large in body and covered in scars from doing unspeakable acts Randel is shy and grateful to now be able to make a difference in little things in people’s lives. He is devoted to Alice, who he believe is allowing him to redeem himself. While in truth Randel’s dedication to the ideals of Pumpkin Scissors inspire the rest of the team to follow Alice (who is a little hot tempered and sometimes attempts the ‘impossible’ – not like ANYONE we would know.).


To know how to fight, to know when to fight, to know how to face the impossible alone, when I am now a passenger in my own body, able at best to send messages out. It is an experience that is unique, and because of that, special (painful but special). I honestly wish, if the results were not death, for others to know this feeling. It is not knowing in your head that you are dying, or even in your tests that you are dying, or in your first body changes that you are dying. It is that state where death is inevitable. People can see it, and no one asks me how I am doing. They talk around it, trying to ignore it because they don’t know what to say. We have no experience talking to those who lie on the edge, so we read books, or we talk about the weather. Cheryl comes to see me, and she and Linda talk about how quickly I am changing, how quickly I am dying. But they don’t talk to me about it. And so I am even more isolated.
At the end of Chrono Crusade, Sister Rosette lives in this state and it is summed up well the feelings that come at the end. Because Death is a bit like a dodgy bus service: You have to wait around for it regardless of how late it might seem to be, there isn’t another option. So to find small conversations, when I have the lung capacity, or small pleasures (or if I am lucky, orgasms – I’ll explain that one later), and watching the one thing I was sure I had control over alter and turn into something else: a stranger. First the body, the legs, the belly, the lungs and heart, the eyes, the arms, and fingers, all eventually strangers, distant strangers. That is the hardest part, the inability to get back up. To have to accept and not confront those who abuse power, those who abuse you, who abuse others, who try to remove choice, as you are too weak, fighting a body which seems no longer your own. But I am still here, fighting.

If you can’t read the four pages clearly, click on then and then click backspace with your browser to return.




No, at that moment, I want to leave the pain, I want to die, but I won't die. But that time will come too.

I keep letters and postcards by the bed and computer, to remind me that I am not alone. And that after a lifetime of preserving choice, when I was most vulnerable, most isolated, weak and chained, they chose, Linda choose……me. To Alice Malvin, I and those who rescue us from ourselves. Thank you.

Who I am....

Today I received a package from a reader who sent me over 100 postcards of kink, bondage, and fetish prostitutes and their numbers. If you want to whip a woman, if you want to chain one up, whatever you want, there is a number of a woman. All women who sell sex.

As sex positive as I may be, when I receive a letter from someone who reads my blog, who reads of my rapes, who reads of my being used as a sexual toy as a child by adults. I don’t know of any woman who has been raped who would receive dozens, and dozens, hundreds of images, like this, without triggering. The accompanying letter told of a conversation in which one male told the other male ‘with a smirk, “Send them to Elizabeth”.’ Yes, send them to me for that is what and who I am, a series of holes to be used, an object, a thing, an item, an it, for rent, for money, for being overpowered, for being beaten; this is who I am, hundreds of images of who I am.

They say, it is not your fault, at least that is what women who have been raped say. Is that what men say? Or Edwardian Grandmothers? Or am I just a whore? No images today, I have to sleep, or not, because of images. Because 75% of those street workers interviewed WERE sexually abused by a father figure (father, step-father, someone who should protect, someone who should care more about that person than their own self).

Send them to Elizabeth. This is who you are…..

(I will send out postcards this weekend, not because I receive mail, I don’t, or I didn’t this week. And not because I won’t have nightmares but because they degraded me, shamed me, made me cry, made me scream used my body like meat; then like day old meat, like week old meat. But the “I” inside never died; and though it hurts like hell, it isn’t going to die today either.)

No pictures today, plenty of pictures in MY mind.

A type of hero: a brush with greatness.

I think many people as they are children, as they grow up, pretending at heroes, or reading about heroes in comics decides they want to BE a hero. I think of the story of one woman who had heard so much about Abraham Lincoln and admired him that when she was finally shown him close up pass by the woman said, “Well, he’s not much to look at is he?”

There are different types of heroes. Yes, there are those who train to go into burning buildings, who we call upon in times of need, who are there for our medical and other emergencies. That is one type of hero. I have to admit I was attracted to the Welsh police for if not for the stupid hats the women are required to wear.

Then there are the types of heroes that change lives in quiet ways, those like David of the Japan Cat Project, like Tammy with her Cat Refuge and Shelter; like the teachers, parents, the pastors, the people who by day to day work make this world a better place. Those who change lives by reaching out, by noticing the quiet child or the acting out child and work to help them instead of label them a problem. These are heroes and a lot of us have memories of a teacher who made a difference, emotional, intellectual, the gift they gave change from person to person but those people are heroes too.

Someone today said that often people choose the easy answer over the complex one. That’s how we like our heroes, to be Supermen, or people with extraordinary ability. People tend not to think about what someone like Stephen Hawking had to overcome to educate and revolutionize the way we understand our universe.

In the film To Kill a Mocking Bird there is a scene after Atticus has fought hard, fought clearly in a trial against a black man sexually touching a white woman. The courtroom is empty except for the gallery where his two children young female Scout and her older brother Jem are with the black community. “Get up,” one man tells Scout, and she looks at him in puzzlement, and he just says, “Your father is coming.” And as Atticus walked out of the courtroom, empty but for the gallery where every person rose to stand as Atticus passed by. He was a man who spoke for those who were denied a voice; a person who would not relent or compromise himself to public opinion, a person who gave it all, even when the outcome was predetermined from the onset. He was a hero. A rare and special type of hero, and for once, while still living, he was recognized as such. He, for a time, wore the cloak of greatness.

I knew when I read that book and saw that film, what kind of hero I wanted to be. The hard kind. Don’t mistake me, the people who do all those things, day after day for 10 years and change the world, they are heroes, unacknowledged heroes. But to act, because you know it is right. Not because you believe it is right, but because you KNOW it is right, and everyone else knows it too, but no one else will act, and you do. That is hard. That is greatness.

I know the feeling because there is total terror inside. Because you have no idea what will happen next, and that is terrifying. And yet you still have to act. Perhaps, probably there will be violence against you, perhaps, probably you will be hated, spurned, rejected.

When I was a child and I was being hit, and cut, and tortured and raped, I waited, I BELIEVED that someone would come. That a hero would come and I would be saved. No one came. I have ached looking out over the city to be the person to break down the door and save the girl or boy who is lying there thinking the same thing. They have been told they will be protected, or that God is watching over them, or if there is trouble the police will come and yet no one comes.When I started to talk about my sexual abuse experiences, I talked to my therapist/counselor about talking about it, and I was warned, told that I could be physically attacked. I was told that it is not uncommon for mothers to try to shut up the voice that is saying what they don’t want to hear so badly that they try to strangle the person. That the family would rather believe the person crazy than it is the truth. That idea is EASY, the truth is complex and difficult. But for every man or woman who writes, or speaks, or publishes about this; 5, 10, 100, 1,000 – I don’t know how many children won’t have to lie there begging inside for a hero to come. That’s because one already stood up; they took the abuse for talking about it and the anger from the family and society about this taboo subject so that the world would change. They speak for themselves but also for those who have no voice. They speak to give fear and pause to those who would sexually exploit or rape, that what they do in darkness will be examined in the light.

Talking or writing about it gives you panic attacks; it makes you feel like vomiting as you do it (at least it does me). And when you realize that the people you are talking about would rather kill you than hear you it is terrifying. But it isn’t really for them. And yes, the parents, the protectors often would rather hurt you, any way they can, from abandonment, to gossip, to verbal and physical attacks in order to just SHUT YOU UP. There is ALWAYS a reason for ‘not now’ or to not talk about it. What reason is there for the children who lie tonight praying for a hero? What is so important, what reputation, or unpleasant, or social taboo subject is so important that a person really has a valid reason if 100 of them live without that hell, if 50 could, if 10 could, if 5 could, if just one life could be changed?But to speak, to write, to change the world, until there are no children or others to need to wait for a hero to come and save them from that particularly hell, that makes these people are heroes. They save lives. Yet no one will say, “Stand up, SHE/HE is passing.” But heroes all the same.

I have only wanted to live and die in service. To die knowing that the other person was safe. I learned late that simply living the truth, and refusing to give in to demands to shut up about it (whatever ‘it’ happens to be this time) or pretend otherwise can produce the most extreme reactions. Day upon day and month upon month of vicious attacks simply because you are still alive. I am finding that when my care agency threatens to remove all care because I call the police on a worker, that maybe there is another group which has no voice. That people seem to think ‘keeping my job’ is more important than ‘doing my job’ and when not doing the job causes potential injury or suffering to people, a person who speaks about that is hated by all those ‘keeping their job’. A person, like me, who opens up investigations by the government branch against their own care manager DOES feels a bit sick in the stomach. Particularly when the care manager tries four times in one meeting earlier this week to get me put into care; a care center where I would be younger by 50 years than others and bound to my bed and finally UNDER CONTROL. I mean, under care.

I realize that I am not exactly going to be killed leading the charge of the resistance, or saving a drowning child. That is not my fate. That for me now, staying breathing is often the battle. That degenerate diseases and disabilities have their own battles which are unseen, unimagined. Yet, oddly it is here, that I can honestly say I have met heroes. People who, in pain, affected by disease and impairment, go on, regardless and bring purpose and joy to others. It does not diminish the pain, the fatigue, the progression of the symptoms, the medical debt, the thousand little things that drain away energy. No, but they continue on, doing their jobs, or waiting lying in beds, building, planning for the days they emerge again, because they have a heroes spirit. Just because they are trampled, they are crushed under the weight of social alienation and medical conditions beyond bearing, not for months but for YEARS, for DECADES and yet they go on. Sometimes just surviving the day is going on, sometimes preparing just ONE MEAL for another is going on, sometimes they take care of others if only just for a day. Or for some days they have a job, they share part of themselves. They resist the call to give up. I find myself in a company of heroes, in wheelchairs, in braces, in scooters, in beds, in hands covered with bits of superglue.

No, you will not be recognized for your actions. Nor your resistance, your going on. Instead you will pitied, or looked down upon. But I can see who you are. And while you will not likely receive it elsewhere in your life; know this, that inside I am standing because I recognize that a touch of greatness is passing by.

Grief and Hope

I have noticed that people don’t know how to deal with this word: Grief. Grief. It is the intense and painful emotions experienced when someone or something a person cares about either dies or is lost.

But we don’t deal with grief; we can barely talk about the grief of losing a pet, and over people loved by us, there is an empty well of silence in this society. There is no where to speak of it, when you scream, there is no echo.

the grief of losing a pet is severe. “The emotional pain from losing a loved one, whether it is a spouse, child, parent, sibling, friend, or pet, can be the most severe suffering a person must endure.”

And for the person losing themselves, their life, and every single person or thing that is important to them: that is suffering. It is relentless and unending, never stopping from tainting everything they must cope with.

So when experiencing something like the loss of books the other day; I have traded or bought or sold books for 30 years. These are books that took me 30 years to collect: they are my memory, they are my plan for the future, my life, my stability. People who know me know that I AM books, I have read over 20,000 books. I used to read 1,000 a year. And now, even that, my last wall, is chipped away and I am the one who must do it. People don’t know what to say, don’t understand what it means: Better to lose books and live longer, right? Except I probably won’t live longer.

Should I say to people, “Hey, better to lose ONE of your kids, you know, cause you’ll live longer.” Or “Better to lose that ear.” Except, wait it isn’t over, another week, another loss, “Oh well, better to lose that eye.”, “Better to lose those fingers”, “Better to lose those toes.”, “Better to lose that arm” – how much more do you want to take. It is rather unpleasant reading isn’t it? Almost offensive. No, It isn’t offensive, it is OBSCENE. But it is happening. And if you can’t look at it, then you can’t realize that is what people have to go through, or that is what Linda and I go through daily. Then I guess you aren’t friends. And you will, like so many more, drift away. Until YOUR day comes, that time you wake up that day and it is as if you have slowly drunken a bottle of broken glass, and you feel it ripping you apart from inside. That is grief.

See, there is palatability to emotions: To our expectations, our hopes, and our futures. We put something aside a DVD to watch later, a book to read later. We start a course, we take a job, we plan on advancing, plan on going out on weekends, plan on vacations, plan……a future.

This is hope, this is looking ahead, this is having spring, or even in winter, the knowledge that spring will come around again. ‘Abandon all hope for those who enter here’ is what is said going into hell. Because those there could never go home, could never look forward to spring, or change, or growth, or anything but the horrid existence of now. Without hope, how does a person go on; the bible calls it one of the Great Three, second only to Love. It is hope that makes people sacrifice for their children, hope that makes people fight for countries, hope for a better future. But if there is not future, is there is no spring.

That I am here, that I write at all is a miracle. I was abandoned, several times in my life. And until you have been KEPT, been a THING, for the physical and psychological amusement of others. You have hope, every day, that someone will come. That THIS day, someone will come and stop what is happening as your ability to create dissociative states and enter them becomes as easy as slipping in and out of a shadow (a dissociative state, or with me, a dissociative fugue state which creates alternative personalities). I created the ‘part’ of me who could use all of my mind and become the seductress, the submission, the broken, whatever they wanted of me. There was a part (actually at least two parts) of me that were locked away, one for safety, and when it was over, they switched; the ‘good’ me came out, and the dirty me, was locked away, in a steel room, with those guys, waking every day to those memories, re-experience being abused, tortured, every day, for eternity. I did that to my self, or to a part of my self.

The only cost is having nightmares every day of your life.

I won’t go through it all, what happened as almost an adult while I lived in the woods; or the time when I was subject to a level of phsycial, psychological, verbal and other abuse for month after month which even the police found appalling, so much they brought in a special prosecution unit. No one came for me then, particularly not family. And I didn’t turn into a psychotic killer or go with someone who beat me, because I know I can handle that. I don’t live a life with rage, or endless revenge. Nor did I create a destructive dissociative personality (well, except self destructive). I could, it would be as easy as putting on a shirt; to go over, even in my wheelchair to every single relatives house and burn them to the ground, and to go to my parents condo and burn it. Which teapot that you collect mum is more valuable than me? Oh, I forgot, all of them. Burn them all, and then due to the particular nature of my disease I have about 15-30 seconds where I am literally unstoppable. What is the point of shooting someone who is full of adrenaline and doesn’t feel anything? Or beating them. Or breaking their arm. I don’t think I could stand or progress for longer than 30 seconds but I could set fire to the police department, the same one which DIDN’T come when I reported stalker or abuse to them. And I could maybe, kill a few of those who tried to escape the flames.

But that’s NOT who I am. See, that’s all still up there though, because when someone emotional tortures me by tying me up and then talks about burning you alive, or sets fire to parts of you, and I know what that kind of terror feels like. But that doesn’t MAKE me a person who does that.

So, no one is coming for me now either. I am as normal a human being as I can be, a pacifist, a person who believes in giving second and third chances, who believes that the innocent should be protected. I am a person who wants to be what was not, I want to be the person who is there, who remains, or ignores the social blanket of silence and says, “I am here for you, come with me.”

And now, I live a life where I have no hope but one, that I might live a little longer IF we get to the Booth-Gardner clinic and IF we can get the tests they want done over here in time. But no, no hope, but grief. And yet, I go on. Grief wraps itself around me, chokes me, makes me cry several time a day and yet….I go on. I would sign up for a four or six month class, but I have to live until Jan. to do that first. And that is out of my control.

This is grief. And yet, I go on. Not because I don’t feel it, but because even if on the last day of my life, I can write the message, “I’m here, I’ve come.” To someone who needs it, then I go on. The dedication of my AWARD-WINNING (heh!) novel Zed isn’t at the beginning because the book, and Zed is what is important. It is at the end. The publisher and most people thought I dedicated it to myself. Why? Because for a person to write a book over five years and care more about a single person they will never know or see, and care about them more than your own self, is an alien thought to them. No one came for me, no one will come for me. I left my dedication as a marker to those so they would know they were not alone. This is the culmination of the dedication: “to every person out there who know ‘What doesn’t kill you makes you stronger’ is not only total crap but far more likely to make you limp or ache when it is about to rain. Or to every person who realizes that the scars of facing the enemy and the scars which are self inflicted look pretty much the same. And especially to evert person out there for whom doing what you love is a giant scream saying, “I exist, I exist, I exist!” – Well, I agree. This book is dedicated to you.”

This is the trailer for Elfen Lied, about two girls, one who was taunted by the population before being subjected to experiments, abused sexually and physical for being different for 10 years before she leaves. Using her power to do so; she also has a split personality, and when she tried to bring them together….. At the end of that road, the one she decides to walk down, is the secure facility where she was kept all those years. The other girl, with pink hair, though she doesn’t realize it, is the daughter of the project director. She is sent to bring the other one back. And fails, so badly that her limbs have to be amputated but her ability (a sort of invisible hands), allows her to use prosthetics and her father faces death so that she can live a life, maybe one day a normal one, with the prosthetics he designs for her. It is graphic, sexually and with violence. Meaning, it is what occurs in hundreds of thousands of home in North America every day.


For a while, when you are not under the haze and burden of grief, when you have hope; there is joy. Whether rich or poor, abused or otherwise, irregardless of age, joy is pure. To sate your lust from another human being is not joy. Joy does not require innocence, I don’t think it requires anything but a willingness to be open to it. This is joy. It is instantly recognizable. I would like this. I thought that I could overcome grief, and loss and regain it. I knew that I would die but not soon, well I would get weak soon, and so I planned and we went to Japan and there are MANY pictures of me showing joy.

And then the money had to go to hospital beds and a walker which I used only a few months, and medical stuff, like pills and hospital rides, hundreds of dollars in hospital rides. And yet, there are pictures of joy; joy in racing, joy in Goldstream, joy in the park with the squirrels. So much joy. Even though every month the faces of joy were less and less.

And every month the losses mounted up; Damage to my temporal lobe; which appears to have healed as much as it will. Inability to convert oxygen, which leaves me unable to leave home until the concentrator comes…if it does, once we know what blue cross will cover. Loss of memory, of my life; pictures of me smiling and happy and I don’t know when that is or who I am with. Loss of the ability to read. A fatigue that grows every week, stealing time, making answering emails almost impossible. Making the daily blog the central task of the day. Seizures, now ripping muscles, bloody noses, blood in the mouth, creating more gaps of memory in a memory which has NO SEQUENCE. While other people remember this came before that, to me is like flowers floating in a bowl of water; those are the memories I have, that is what I know, and WHEN is not what I know. “What day is it?” I ask people who don’t understand what temporal lobe damage is. And they say a day and I say, “No, it is TODAY.” And every day is “TODAY” I have my own week calendar which is based on what I know and only has four days, Fridawrites day, because her name is up there, Frida, and then Saturn’s Day, then the Sun’s day and then Mundi or the Moon’s day. So my worker will say, “See you on the moons’ day.” And I will know. I cannot figure out the other days.

I am not unintelligent, though, as I said to the government branch investigator yesterday; I am not the same person who wrote that book; I am a similar Elizabeth. And each future, each bit of future brings me another loss, another ripping away of a part of me. This week it is falling down and heart problems, next week it will be something else. Something else that will cost money to fix, or time and I have little of either. But I want to live. I do get angry, I get angry sometimes at my readers, though I love them, and I love the people I send things to because why do they get to live and I don’t? They just do. And when people avoid that fact, that I will die, and avoid the fact that I AM grieving and that it is one of the most painful emotional experiences if not the greatest emotion suffering I am or have faced daily, hourly, by the minute. When they avoid talking about it, when they awkwardly join that social blanket of silence, then it is as if I or my or Linda’s suffering doesn’t exist. And that is cruel.

Dawn, who may not be able to read this right away was a person who it was hard to for me to write to. She had lived her life, knowing what I know, that there is an end, inevitable, and there. And also, that her brother had just died of the same disease a few months earlier (when I first started to try and comment on her blog). The grief must have been and still be at times almost unbearable. To have it feel that like everything in life including hope is taken away. Because that is what I feel. You see, this is the road I travel.
And this is the road most of you travel, this is the one with hope on it, the one which has blue skies and company and companionship. And while I desperately would like to be on that road, I am not. And while a few months ago I could play the ‘ahhh, this could go on for a good long time.” Now I can’t. I am on one road and you another. The reason I mention Dawn is because she started a Ph.D. and statistically she should be dead already. But she started a Ph.D. and 'statistically' she has a decent chance of never finishing. But she goes on because she loves it and because she believes she will finish and every class she teaches and paper she writes makes a difference. Doesn’t change the road she is on or where it ends but adds a few flowers, makes the sky blue. I don't know becuase I'm not Dawn. But she seems to have moments of joy.

Just to let you know. I am a competitive person and dying hasn’t changed that. Dawn has, by simply being Dawn, probably forced me more times than I can count to pull myself up once again. “If Dawn can go on, so can I”; “If Dawn has to evacuate her house and studies and fish and leave them and she can still go back and start again, so can I.”

I hate how when people are alive people are too embarressed to say how they made a difference. But when they are dead, everyone does. Why? Because dying makes your hearing better? But I guess I am just as guilty of never saying to the person what a difference they have made to me.

Thank you Dawn for being there, not to save me. But simply to show me how to keep going on; to make my competitive spirit say, “If she can do it, I CAN do it.” I know that as motivations go, this is pretty low, but still, if she can do it, I can!

Right now, I am not going through the motions, I am in motion. I do postcards, I write blogs. I spend time with Linda, I am starting some long term projects. I order things over the internet that are beautiful, because, just because I currently only have one pair of jeans small enough to fit me, and we don’t know if it is worth buying another because when I become bed-ridden, I won’t need them. That doesn’t mean I shouldn’t live this moment with the JOY of anticipation, of having something good and real and beautiful which will come for me (so WHAT if I have to pay for it! Oh that reminds me, I need to order a stiptease, hmmm how to explain THAT on the credit card?).

This IS my life. Anger, yes at both myself, my limitations of memory, of being corrected endlessly in public, in private, to have a person ask a simple question and not know. To want to give up, to destroy everything, to burn every postcard, to in an act of destruction free myself from the humiliation of trying and failing. And sometimes I do, there are wounds are my forearms that won’t heal. But it hurts, and I start again. I go on.

And is there grief? Yes, is it like having to rub crushed glass into your face, to sit and listen to professionals or OT, or PT’s or doctors or friends talk about what I am losing or going to lose? It is, it is like glass with salt rubbed after. When they say by implication how much less my losses will be because MY life isn’t equal to theirs. That their house burning down would be a tragedy, but MINE burning down, as it currently is, all around me, is something I am supposed to be grateful for, because I am still breathing. But I go on. I don’t know how but I will find joy and blue skys or parts of them again. I may not remember names, or faces, or what I did two days ago, or what city I am in. I may find it hard to breath, I may find it hard to talk. I may spend all of my money giving away things because even if I can’t feel it, I can remember what a pleasant surprise felt like, what it felt like to know someone cared. Because I will not go gentle into that good night. There is nothing good about it, and I will not wait for it.

I will not let grief dictate me any more than I have let the other pain I have endured dictate me. But I will also not let people ignore it. Grief is part of me, and that is not only normal, if I didn’t have it, it would be abnormal. But I will start again, maybe only a day at a time, if that is what I can remember.

Here again is that anime EF: a story of memory, about a girl who has a memory of one day – each day she reads her journal or repeats what she wants to remember. When she is angry she can simply slip into the timelessness of “Today”; or rip out pages of her journal. Because most of her life no one came for her either. It is a short music video, and it is about pain and grief and how it cannot be stopped; that you cry; but then, because you can’t stop the crying, you stand in the rain. Then at least you LOOK like everyone, or you can make choices where people look beyond the crying.
I cannot control if someone will come FOR me, care FOR me. I cannot control whether I will recognize Linda towards the end or simply live each minute in pain and terror. I cannot control that. But I can control how I act today and start again, and do things to say to people, to Linda and others, “I’m here for you, you are not alone.” I made that dedication in my book, and have lived my life so that if at all possible, someone like me would never again have to exist in this world.

And to have that happen, someone WOULD come, that someone WOULD care. That this cycle of terror, abuse, pain, and distancing, pretending that nothing is happening while the person suffers alone will end with me. I will not live to see that happen I fear. But this isn't a 'world' but a world which is made up of individuals: some lonely, alone, abused, terrified, bruised, individuals. Please be there for someone. Please stop pretending that these things don’t exist, even if you don’t know what to say, say that.

If you can do that, you will be giving me something which I am incapable of giving myself: hope.

Alone

First: Linda has written about my now being a patient of Seattle world health center here, Cheryl adds her view here of my medical progress. Linda adds another post to A Girl’s Gotta Fly, I haven’t read any of them, they asked me not to.

My turn:

Have you ever stood on a painted line while people picked teams, and known that you weren’t going to be picked, at least not until the very end when your lack of coordination would be publicly discussed?

“You take her and I’ll take the one with the squint.”

Yes, a life not so much chosen as what was negotiated as a consolation prize.

These days I have that feeling, where I used to go to libraries and coffee shops so people wouldn’t be able to see it so obviously. I was alone. I am alone. Not the solitude of needing “time alone” but the aching in the bones that whatever it was that drew people together, I didn’t have it. Or I had it in abundance but it didn't work for me. When people went for drinks for after work, I wasn’t invited; when my ‘friends’ who were in fact just the people who would talk to me, whom I had elevated to the idealist term of “friends” had a birthday party I wasn’t invited. There was something different about me.

I am sure being part of a culty religion didn’t help.

I used to hike between midnight and 4 am up in the San Gabriel Mountains, following the paths I knew with no light, no provisions, no need but to get above the city, and see it, those millions of souls. I was 17, 18, 19. I don’t think my parents cared where I was, in that as long I was properly dressed and the house was clean for Friday night, then what did it matter if I performed sleep deprivation experiments on myself in my bedroom or simply didn’t come in. They KNEW that I would not be at a party, not drinking. I used to walk at night past the houses, catching that second flash of people who seemed connected doing things.

I did things that no one had every done intellectually and instead of making me popular with anyone even teachers, I was isolated instead. I spent two years of high school largely by myself. Left in the morning to figure out Calculus by myself because I had passed the books and teaching the Teacher on loan from the university had. The afternoon I put out the school newpaper. Of course, we didn’t just break the record for putting out the paper, I broke it by 8 times more than on record.

I spent my time focused to the extent that many immigrants would understand, working till the minute I needed to leave and cycle to university. Or cycling from working at school right to work. At 18 and 19, I was the last to leave work, doing the regular work as well as the company bookkeeping. At my college after auditing the second year of English lit (in seven essay tests, taken over three nights), I took seven consecutive courses which started at 7:00 am in the morning and finished at 10:00 pm crammed into two days. I did my homework on my work lunch break. I had no friends. I had no one who would talk to me.

I’m not going blow by blow through my university education, but lets say that I was always accepted on my transcripts but once I appeared no one wanted to be my mentor, or teachers. At my masters, after one semester exposure to me they couldn’t find anyone INCLUDING the director of the program who would be my first advisor much less my second.
I had gone to the masters program from an isolated teaching practicum. It resulted in my mental breakdown, an “internal” investigation of hired but not monitored invigilator for the student teachers on the grounds of sexual and other misconduct which gave us that survived to the end, blank checks to do it anywhere we wanted free of change.

Most of my life, in one way or another, there has been a passive to outright aggression, simply because I exist. And this disease/disability has changed none of this. I found out today that the Beacon Nurse is telling new worker to ignore my directions and the care plan. Doctors have tried for months to say that somehow the fact that my nerves are dying or dead is my fault. First I was accused of drugging and doping, with one doctor almost refusing to treat me until I told her what performance enhancing drug I had taken for epee, and was doing this to me. Two others came up with interesting reasons why they weren’t going to treat someone of my ‘lifestyle.’

Ironically, all I have ever wanted is to fit in, to be friends like people I see acting friendly to each other. What I learned is that family is a word synonymous with “pain” and “hypocrite” – because there is something about me, something horrid, something monstrous; I know this because my parents told me; my aunts and uncles told me. Going to a Xmas party and having 70 percent of the people walk to the other room and turn their back on me, the one who would speak to me, accused me, due to my relationship with Linda, of being a predator to sexually abuse child. That was pretty much the end of those ‘Christians’ I dealt with. Don’t worry, there were more, and they decided to allow the opponents free forum to espouse why gays were going to hell as “anal fecal loving lovers of Sodom” I can joke, “Hey, I don’t do anal” but it was the same, to these people women didn’t even rate high enough on the human species to be hated to that level. We were denied from joining ‘our’ church’s ‘pride stand’ at the Pride event because we didn’t have the ‘right attitude.’ Or I didn’t. Linda they wanted. Me, not so much.

I wish I could lie down and let dunes of sand drift over me. I wish I could lie down, that God would give me peace. But I can’t, or when I do, the pain of laying is extreme. The one thing that has made me so despised is a very short list; I had probably the highest intellect of anyone on the continent, and combine that with a photographic memory and “freak” was the word most used to describe me by teachers. A few times, in innocence, I verbally replayed an entire conversation they had the previous year where I was sitting in the office waiting to see the principal for starting another math or chess club with appropriate permission. One teacher told me and everyone else that I was a sociopath. Oddly enough that was what my father often accused me of. Because I would eat or drink (something out of the fridge), or read (a magazine sitting on the couch that didn’t belong to me). See, I was an incurable thief, stealing what did not belong to me, and punished as such. And my thanking of the corporal punishment needed to be from the heart, I needed to BELIEVE that I was the equivalent to a murderer in the eyes of God.

Gee, wonder why I didn’t fit in. I found out later that God’s eyes are often kinder than my parents. I used to believe that there was something about me, some common factor that would explain why, did they all leave, did they pretend not to know me (that was a favorite trick of parents…and Grandparents, we are multigenerational fucked up). And now I know why. I am an object. I’m not human, but I’m not a human, and I’m not an un-human or “u-h” as I refer to it. I have a slang for it as at least once a week I get people in my living room or I go into many people’s offices who by the way they treat me, show they do not see me as an equal, so that they are the people who determine those who are “like them” or acceptable (human) and those who are not, and thus to be threatened or crushed because they don’t have the same feelings or same rights as the person (an un-human).

But I am lower than that, object. Did I mention the other thing that makes me so hated? I follow the instructions of my father and tell the truth, and keep to the right. When most people have a large amount of fantasy in their life, or revisionist history and they can see me, not even saying anything, dissecting them down to their premises, their core of modus operandi, then they call what they see monster.

My care agency has openly admitted that no one who feels uncomfortable around me need take care of me, and that those who do come don’t need to either. I told the social worker today that Beacon has a list of workers who won’t come, and the worker there, unasked, said it was true and they told her I had seizures and she could leave any time she felt uncomfortable. The social worker asked if the care agency did any seizure or epilepsy training. And she said no, but they told her I would have a poster on my wall on what to do in case of seizure and while she hasn’t looked at it yet, she will. She was more upset that people could not come if they didn’t like lesbians. I said, “well, I think training people to deal with epilepsy might be a bit easier, but yeah, why not train for that too.”

Sometimes when I feel low I refer to myself as “the body” because it seems that is what dictates everything, that I live only to keep “the body” going, or that is all people see of me: my disability, my body.

But now I know that I am lower than that. Those times when I was the victim of hate crime, “I” was not the target; they didn’t hate ME, they just hated, and I fit the category. The times I was sexually abused and raped, even as a child, it was never ME they wanted, I was merely an external object of pleasure, a doll to relieve themselves with. And when I was hurt, cut, threatened, physically abused, beaten, it wasn’t me, it was them. Did they even know my name or just that I was a thing which could cry. I was not abused because of me, at least not then, but because I was an object of convenience.

As an adult, then the social and psychological abuse wasn’t really because they hated me, well I mean they did hate me to the point of wishing I didn’t exist, that I never existed (at least that is what my mother said, but then she had lots of versions of history; histories where she had to be drunk and I was the product of spousal rape; or the one where the pain of having me as a child started so young that even from the first she didn’t want to touch me, it hurt to much to touch or even feed me; I was pain incarnate. But like I said there were many versions).

The skills I learned of how to survive, how to stand up for myself against those who want to crush you because you know what you want and are willing to sacrifice to achieve it, are leaving me. My body is leaving me. My mind a bit too. I am become dependant. I, the person who learned how to run away from home and stay away, and not eat and survive, the young girl who could always take more punishment because these people didn’t know what pain was. I was born into a world of death and torture, this I was told. I was made to perform feats that made me alien to adults. The only thing that hurt me when my father hit my face enough to spin my face was that he had hit my face. He too had rules, where one would be hit, and sometimes a limit on how much. The school I was sent to had no such limit. They used to hit you until you were reduced to tears. It is thanks to them that I learned that while your body can cry due to pain, it doesn’t have to stop your mind or body from acting is you disassociate. That got me another “sociopath label”, to be hit, be crying and calmly making an argument against the practice in theory is not something people are supposed to do.

A few people think I don’t know about disability. And I admit that I came out of the closet very late in life. Of course, growing up in a religion where acknowledging being sick or seeing a doctor is saying that you hate God and have no faith that God loves you did stint me a little there. But I knew all about pain; pain so bad I couldn’t sleep; and that wasn’t this month, this was went I was 16, 17 then I couldn’t walk, 18, and finally operations. I was told they were “irreversible” and that if anything else ever happened, I would never walk again. Oh. Well, that sounded more dramatic back then. Which is why I started training for the marathon, often in the middle of the night, sometimes naked, other times near naked. I got followed by a lot of police cars. Warned a lot. Heard a lot of coyotes.

Because let’s see, I had been used as a human shield before 10, been prepared for torture, been tortured repeatedly, been sexually abused and raped by five people so far (well one family member and four others), been hit or had other forms of corporal punishment every day for long as could remember. I could and was required to go 1 to 3 days without food or water on a monthly basis, was called every name conceivable, had a connective tissue disease which caused pain so bad I couldn’t stay still. I slept on the floor without covering so that nothing more could be taken from me in punishment. I regularly ran until I couldn’t breath or only vomit to “drive the devil’s thinking out of me” (lesbian thoughts). I had paid rent since 13, worked since 12. I ran without lights because I could travel over terrain full speed without them even cross country. I did not care if I lived or died and wished to God that he would make up his mind. So what was it those police wanted to protect me from again?

I thanked God I came from a perfect family, I just couldn’t figure out why I was so screwed up.

“From childhood's hour I have not been
As others were; I have not seen
As others saw

I guess I want to say that I don’t know why you feel alone or lonely, but most of my fight came about from determining that I was simply not going to lay down and die, or to no longer spend my energy doing what I HAD tried, fitting in and failing.

And all I loved, I loved alone…in the dawn
Of a most stormy life- was drawn
From every depth of good and ill
The mystery which binds me still.

So I understand when people have defenses and barriers. I try to have none, and every day, every single day I open my email I am hurt (you have no idea the amount of um, hate mail I receive). I was told today that Ginsing and Calcium would cure my blue fingers. And I just sort of smiled. The person hadn’t even asked what was wrong with me, didn’t care, just cared that they knew all the answers and I was lucky to have them. I can’t break through to that, just be hurt. In fact, there is little, if you read the bible as a template that kept people to Jesus. In fact at one point all the people who were his “friends” were reduced to a handful, who openly said “Um, quite honestly a lot of what you say is confusing at best and pretty horrifying at worst.” Jesus asked why they stayed and the most outspoken said, “Where else are we going to hear the rest?”

From the thunder and the storm,
And the cloud that took the form
(When the rest of Heaven was blue)
Of a demon in my view.

People matter. I don’t. You can attack me, you can’t attack someone on this blog who opens themselves up to comment. Don’t attack the person, but attack discrimination, the ideas that some humans are less than others. Bring people together, remind them that they are the most important. Each person, when I do my postcard is THE MOST IMPORTANT person for the time I do that postcard. You have, what few people have in this society, my full attention, my caring, my wanting what will make you happy, what will give you delight. The same when I send a package. Yes, I am stuck behind my filters (and the odd idea that odd and twisted Hello Kitty and Anime things are interesting to everyone). If you think you care, find me people to convince that they matter as people, let me send a postcard.

Children matter, people who are innocent matter; they are to be protected, whether 5 or 50. I have no hope: not for my future, nor my past, and if I wrote a bestseller right now, I would consider it a WASTE OF TIME compared to sending out 100 postcards. Why would I want to be remembered, why would I want fame? You know how normal parents or immigrant parents want their children to have a better life: I want my life to have meaning, which is that some people, somewhere have a bit of a better life because of it. That’s all.