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.

Victoria PD condone abuse to disabled: so I go to the park, have intimate squirrel 'encounters'

Today was pretty darn horrid. So I’ll deal with most of that later; just to let you know, abuse of the elderly or disabled in Victoria is A-OKAY according to the police.

Now the police will come for a child left in a car, and domestic abuse, but abuse or neglect of the disabled is NOT a police matter and if you try to ask for clarification, you get told as I did that “I need to answer a REAL 911 call.” (I was connected by switchboard, this wasn’t the 911 line, so I think that was the “you are a nuisance and I don’t want to talk with you!” way the Victoria Police Department deals with things. So, by the by, Thanks to Neil, I made the call and have starting next week an Ombudsperson investigating VIHA. But no-one including the police will regulate Beacon. Though the police did say they would ‘monitor’ the ambulance call in response to a ‘sudden death’ at my residence. (no, I am not making this up, I wrote it down, and no, the officer did not know who Dr. Shipman was: a man who killed in far excess of 215 elderly patients….for being in need of care. By the way, even with a police investigation he killed three more women and was only caught really because he made a forged will from the last victim giving her estate to him). Donald Harvey, an American caregiver only managed to kill (his claim) 87 before being caught. Let’s see if Beacon can DO BETTER! And if Victoria PD can watch.

So, how about another day, like the day I went recently to see the squirrels? That’s always good and they were GLAD to see me, even with the competition from the dogs and the peacocks. As you can see, the Black squirrels were politely lining up to jump on the “Bethmobile” fill up with peanuts (that really does sound quite steamy doesn’t it?). Anyway, the lining up shows that Psycho NOR Dojo was among them today.

The grey squirrels were a little, um, different, they seemed much more tactile, and much more, to put it bluntly, horny. I have to hope that this squirrel sees my leg as a tree branch instead of what it looks like small dogs do to people’s legs at times.

This squirrel quickly got out of the way of what I call Psychotic Aerobic Barbie. I know these women, you know these women: they can’t do anything without showing off how INCREDIBLY limber they are. “Oh, is that a quarter on the ground?” The next thing you know they are doing the splits to retrieve it. So you can see my “humping” squirrel slinking off in front of Barbie here.

So first Barbie does the “limber up” which shows off her defined rib muscles and all around toning.
Then you have the full on, “I bet you other squirrels can’t do this!” stretch! Yes baby, feel the burn, oh yeah. Meanwhile I am sort of just open jawed because, hey Barbie, this is all for a peanut you know…. Except I didn’t know.

Because THIS is what happened next. Okay, first off I want to say, I am pretty sure this is legal in this province, but also it was NON-consensual (Barbie took advantage of me, sob, sob!). And NO, this is not how I know I don’t get clit vibes. Jeez Barbie, just take the damn peanut, oh for the love of...no, stop rooting around...take the peanut and go before we both get arrested!

See, this is what happens when you visit the park. I am sure this will show up on a lot of training videos for children on the dangers of randy squirrels (who cares about rabies!).

All right, move along, the SHOW is OVER people!

Linda is not an abuser! And talking about abuse in a non-safe space

Linda is not an abuser! I am not in an abusive relationship! I was in a very fucked up head space yesterday and I have this blog rule that I don’t talk about Linda in anything other than good ways for this very reason; that people can like the voice (me) and thus blame someone else (like…say Linda!). And what happened was very complex and covers decades and I put down about 4 sentences. So here goes....

Okay, I was physically abused in my life for many, many years/decades. I have not been ‘abused’ by Linda. Yesterday was a really horrid day for me, partially because I again tried to reconnect with my parents. This meant talking to my father for a LONG time about things that are so unbearable painful for me but yet to him completely dismissive and forgettable or worse that by asking him to remember things like, my brother sexually using my body for over a year, I was being a BAD person. Plus it was clear that my father was, though living a few blocks away, completely unaware of any of my medication conditions including: my need to convert oxygen (my hands turning purple along with my blue lips while we talked didn’t mean anything to him), my seizures, my partial stroke, my loss of memory, pretty much anything. In fact for my anniversary they gave us an album of pictures of me, there aren’t really any pictures from the last two years (with me in a wheelchair), or me fencing (because though invited to tournaments they never came, not even the ones in town).

But then, my father comes from a family where abuse=love. In fact to this day, the rest of the family gets together to verbally and sometimes otherwise abuse each other. Literally nothing good is said; if you make someone cry, if you say something so hurtful they leave, or vomit or pass out, then that means you win (Seriously, spouse dies of cancer, make fun of the member of the family stupid enough to marry them, and then make fun of the dead spouse). And yet they keep doing it over and over again because that is the only signs of love they understand. My mother's heritage was even worse. So in one way I can understand why my father even when he may not WANT to be like that, still ends up being like that. And how when describing how I was told in very vehement terms by my mother that we were not going to be ‘allowed’ to go out with them because I acted completely inappropriately. It turned out that the ‘inappropriately’ was passing out and falling face down in my food. To my Father this was not even memorable. But when he realized it was in the first 9 months or so when “they were ‘processing’ my disability” (meaning they wanted me to control it better so that I represented them better in public….like not be in a wheelchair for example), he said, “Oh yes, that would make sense then.” No apology or remorse really just a “Oh yes, that is how things are.” I don’t want to go on an on because I do love my parents even though they often and frequently hurt me, the one time they might see me every month or two. This however was a concentrated dose, prolonged and finished with my father leaving me crying because he had an appointment elsewhere, and well, me crying wasn’t really enough for him to stay was it?

So all in all a really bad day. Then we had the blog and some emails which didn’t go that great to be honest. But I am the one publishing the blog and I choose to put stuff out there (like this) based on my assumption that people are basically good and sometimes things happen in a very small space of time and you get turned around inside. And I became to believe what I USED to believe; that I deserved whatever physical, sexual or other abuse would come my way. In fact, I used to believe the only way I could exist was to be abused. I know that is wacky thinking but that’s what getting beaten for 19 years and then being forced to tell the person who beat you that you love them (and beaten again if it doesn't sound sincere enough) kind of does right? That’s what being sexually abused and then getting beaten for not having your bed made perfectly does. That is what happens when your extended family tries to create a restraining order on you, or your own grandmother refuses to look at you because you came 'out'. Being sick or disabled doesn’t make a group like that change their mind, being disabled only proves to them that I was ‘weak’ and not really one of them anyway. That is my extended and close family.

So when Linda late at night misunderstood the previously blog and kept verbally slapping me down because she kept talking about how I was stupid and they didn’t want to hire me because of my stupidity, and I was trying to tell her it was the WHEELCHAIR. But she kept saying, “Let me finish what I am saying,” in that tone a boss uses to the lowest underling before going on about the type of stupidity people see me. Well, that was a bit too much. Plus I had the computer open to yet ANOTHER incredibly painful email sent to me ABOUT me and disabled people. Now, Linda knows I am not stupid, she does not think I am stupid, but we run into people a lot who think am stupid because I am in a wheelchair. She didn’t read the blog, or didn’t remember it perfectly and while the post was about how I don’t even get to be seen at all, don’t get to be a human because all people see is the chair, she thought it was about this “stupid” issue. Of course having my partner going on and on about my stupidity while I am in pain (physical) and at the end of my limit of emotional pain too was the end. Also, when Linda works late, she often comes home and has office speak, so I have to just say to her, “Hey, I am NOT your assistant, so why not try saying that again.” Because spouses don’t say “I want you to get me this, this and this and I want that forwarded to me.” – at least we don’t, but if she works 10 hours as a manager at work, that is exactly what she does.

So, I left the bedroom. I went to the kitchen. To Linda, Beth upset plus Kitchen equals Beth is going to get a knife to cut herself. So when I moved my arm she grabbed it. I don’t think she knew how upset she herself was (for reasons not for here), nor how sick I have become and so she grabbed me hard enough to leave little finger bruise marks. Remember, only a short time ago, I was so strong that I could probably lift Linda up with one arm, my epee arm. So Linda grabbing me with the same strength as then (which may have been the last time I felt like this), had a totally different result. Then as I tried to move forward she body checked me (now that I am smaller and weaker than her, I think again, she is not used to the vast difference in strength), hard enough to wrench my shoulder and bounce me quite a ways. Was Linda “physically abusing” me? No. She had however made an assumption and acted on that assumption before talking or waiting to see if it was correct. It was a late and hard day for both of us. And I had not given her the space to tell what she understood and then corrected her but took it all very personally. So no winners here, just the kind of things that happen when couples who love each other have bad days.

However, her bruising and body checking/slamming me confirmed to me WHO I WAS. That I was a person who got these kinds of hurts, these emotional hurts because I DESERVED IT. This idea/action opens up a door in me. Inside that door is a demon which says, “Only when you have been punished ENOUGH will you then be loved.” Because that is what I had been told and what had been written on my body for a couple decades. So I had a whole day of emotional pain to punish myself with, so I started hitting my face, and my body and my legs, and my face again, and standing up, and then falling down (because I wasn’t on oxygen, and not so good on feet anyway).

Okay, this is a very private thing that people with abuse know about sometimes and those that don’t think is sort of crazy. And this not who I am nor have I done anything like this in years, in fact, I thought all that was gone forever. So I guess there is some counseling in my future. But the thing is that Linda tried to talk to me, tried to keep me safe, would sometimes leave to see if she was the trigger, would do anything EXCEPT grab me again because she knew now THAT WAS a trigger. I was in a particularly altered state. Linda wanted only to hug me and take care of me. I couldn’t let that happen until all my sins had been laid upon my body (meaning that I had been beaten and beaten until I couldn’t do that anymore).

So, again something I didn’t really want to talk about to everyone. Something I don't want to be judged about unless you have lived a life like that, in which case this really doesn't need the whole explaination. But this is the internet and people who care about people are going to have feelings. Okay. I would rather show you the type of screwed up person I am, the reason I call myself “the thing” or “the monster” and believe that I can only cause pain and suffering to those around me, than have anyone believe that Linda did this. I am saying this, not in a “Safe space” but in a public and open arena where people will again probably use it against me, because I love Linda and I would rather people understand the truth, which is complex and kind of ugly, than think she is an abuser. I AM an abuser, I just only abuse one person, myself. I never hit Linda, I didn’t last night.

Are my parents to blame? They were just showing me the kind of love they received. Were THEIR FAMILIES to blame? Or was I to blame because I knew better, I counseled about this and yet, this trigger broke through. Was Linda to blame simply because she was having a bad night? Or were the words to blame, words that every other night would have made me laugh and go, “No, not the stupid, the wheelchair, see, I don’t even get up to the level of being assumed stupid because that would require me to be a human instead of just a wheelchair.” Or was I to blame because on the same day I was getting slammed on the phone, on the internet, on email, I decide to have a long conversation to give my parents another chance (which turned out to be another chance to hurt me beyond comprehension). Or is it just what happened.

Well, once a person IS done beating herself, if they have a system which is not so greatly balanced and ill like mine is, it then becomes a problem getting to sleep because I stop breathing. A problem because my lung won’t inflate and my lips and hands are purple. I problem becuase I have partial seizures. A problem because if we go to the hospital I will be under suicide watch, and a problem because I haven’t taken any pain pills for the whole day, and just because you get the demon back behind the door, it still leaves you a wrecked body to deal with. (Seriously, today, I feel like I've been beaten up.....laugh, laugh)

So there is the squalid tale of yesterday. No, Linda is NOT an abuser. Nor an emotional abuser. We are a couple who are trying VERY, VERY hard to leave the legacy of the things done and the attitudes forced on us, into a new and better ones. We want to be balanced, loving, supportive individuals – we know exactly what we want because we have seen the opposite in many forms. And we work toward that. Why yesterday/last night happened is something we will work together to find out and to stop, particularly to stop falling at times of crisis into old patterns. But if anything, it is about some people who are hurting and vulnerable, which I think could include a lot of people out there reading who are hurting and vulnerable in different ways. Now, this is a partial explanation of last night. If I could please, can ask that you please try to treat it with the respect as if this WAS a safe space instead of the big bad internet.

I want to be a good person, and I want to be honest. To do that and live by my values, today that means I have to share with you something very private and rather horrid about me as a human being. Because I want you to understand that to Linda at these times I am like a cat or dog from the SPCA who has been abused. She wants to take care of me when I am in those states, but sometimes, I am so far back in that abuse mentally, I can’t even really see her. I don’t think there are bad people in this story but one person who is and was hurting and couldn’t control herself and another who is hurting because the person she loves had to beat herself to the point of semi-consciousness. All because she (which is I) couldn’t break the chains, couldn’t believe that there was love, unless there was abuse.

Opposition, and abuse

Actually I don’t wake up in the morning hoping for overwhelming abuse and opposition. Just to let everyone know. It is simply that if I folded or gave up every time someone bullied, and in this world there are a great many bullies, ones almost every day, then I would be part of the problem. Then it would not be long until I would be standing by watching injustice being done in front of my eyes, being done in my name and doing nothing because….well, I don’t want to be bullied.

I did have to hold off a couple comments because I did state that the Mr. Anon in the previous piece was an archtype and it became easier to attack him than it did to share of ourselves. Also that Mr. Anon was going to be an advocate one day, he just didn’t know it yet, because age, if nothing else introduces us to pain, to chronic conditions and to our limitations. So while I put my name out on this blog and continue to stand up as the whipping child, I was giving Mr. Anon a pass, he spoke his piece and I spoke mine. So if your comment didn’t appear and you want to repost it without the attacks on Mr. Anon I will be happy to publish them. I don’t want the comments section to be an “in club” or a place where there is ugly attacks at length. And if you do like that, I can recommend you to several feminist blogs where the many dozens to hundreds of comments on the post are often viscous attacks of individuals.

For me, it seemed today was a lot about learning who I was, and who I wasn’t and what I was good for and what my value is (less than $500 in case you are wondering). I have been emotionally attacked several times today and physically a couple too. Some of those were by proxy. Turns that, for me at least, there is a difference between emotional pleasure and emotional pain, and between physical pleasure and pain.

Yesterday, while trying to come up with the #10 reason of why to live, I quickly ran through my mind and came up with 10 reasons why I should die. Pretty high up there is because a great many people would be pretty darn happy with that outcome; it would resolve all sorts of conflict from relatives unable to tell anyone about us as a couple to people who still don’t “accept” my being sick. Darn it, another one of those ‘lifestyle choices.’

I did a blog today for the Postcard Project. I also ended up working out the average cost per postcard. But the number is so ludicrous that I have no intention of telling anyone. I have managed to get past my fear barrier and put some things on ebay, a couple of which have sold. Ironically, I have spent 1/3 of the money already on a set of 12 postcards. And I have a few more orders for stickers and postcards in. Yes, I will never learn. But on the other hand, if I did cocaine or heroin, it would be of no good to anyone but myself, while with this, I presumably help others, or at least give myself the illusion that such is so.

I had some prolonged contact with some family members today so there was some talk about sexual abuse (mine), and how sort of unmemorable it was for everyone else. Oh well. I guess it is like the news, got to keep the abuse current to keep it interesting or have memorable conversations. So I am in the mood for a good rape if anyone wants to drop on by.

Also, was going to make a joke about if anyone wanted to do a snuff film but then realized I wasn’t joking. You know, that kind of nice head space.

The problem about having a blog by your name, filled with pictures of you, and the like is that if people WANT to hurt you, in email or otherwise, sometimes not even intentionally, it is really quite easy. There is literally no place to hide. It took I believe about 26 hours from me revealing the disability I was most ashamed of and one which I am quite capable of hiding, brought back to me held in the air as a reason I was a lesser person.

So it would be easy to not do something like that again. Except then there is no point to this blog in the first place. There are no awards listed on the sides of this blog because I don’t display them. This blog is about either the writing, the story or both. And when either bores you, please feel free to depart, to find someone with a disability who is more interesting.

I am not, it seems, a disability activist, because I only write about ONE person generally who has a disability. Nor am I a feminist, because I write about being disabled (which I guess comes under Hobby?), dunno. Not engaged in the feminist blog wars of today, which doesn’t seem to include whether all women can ride city buses or be able to apply for jobs; able bodied or otherwise, but about more ‘important issues.’ In fact if there is one thing I can almost assure every reader is that this blog is not going to be considered about ‘important issues.’ I don’t blog about politics (intentionally), or lesbian gossip or films (intentionally), it has pretty much been limited now to what is it like from a single point of view to face pain, to face indifference in a medical system, to face loss, grief, degeneration, and death. And it covers both the physical and emotional ways in which a single individual tries to deal and cope with that. And that’s it. A conversation today about my funeral, how I want a small wake, and who is not to be allowed.

Lyrica is great and Lyrica helps me have a time when I can do things and plan things and get things done before it stops working, because when it does, the shit is really going to hit the fan. I was going to post several days ago that if you WANT a postcard that you had better ask very, very soon, because the quality of my writing, the effort it takes me to hold a pen and the times at which I am simply illegible are increasing. But then I had a good day and so I put it off. That is what life is like right now. I am taken to the brink over and over again and then I manage to have a good day and I put it off. I don’t kill myself today. I don’t stay in bed today. I don’t give up on going outside four times a week today. I don’t give in to the pain today.

Except today I did. Today I beat my face until it was raw. And my body. I did it for some of you. Since you weren’t here to do it in person, or drag me behind your pickup truck. It is my demon and today it came out to play. Linda grabbed me, she hurt me. She shoved me, she body slammed me. After that anything was fair game. She had told me that my body was something to be used, and so I used it and used it until there was no more left. Until I hit the walls with the force.

You know, I don’t really like to face abuse and overwhelming opposition and bullying. But it is, in some ways, all I know, all I know about people and all I know about myself.

I will be back and I will continue to post the things I hide, the things I am ashamed of becuase this is my record and I don't know how else to do it. I'm not allowed a cat you see, management says no.