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.