Today was a ‘bed day’ which I really wish meant this. Because to be honest, while I might not have the health for lesbian romps, I can think of no better way to go, if you know what I mean than while having an orgasm screaming, “Boobies!” (Note to self: get more negligees).
No, a ‘bed day’ means that I cannot get up due to health reasons and the small times I am up, I need extra medication, and have to lie down frequently. Not a lot of orgasms, but a certain amount of screams, moans, shock spasms, and seizures.
In the last two days I have had some long and some difficult posts. I noticed after the first post, in which I shared to all a part of myself I haven’t really shared to anyone, that people were either missing it entirely (like their screen was blank, or they WANTED to not engage in it). The second day’s post, called Grief and Hope took about five and a half hours to write (another 90 minutes for the pictures) and was VERY deliberate. I was not angry, but I was challenging people. For some that meant expanding themselves, in the same way I challenged the YMCA/YWCA to expand THEMSEVES regarding disability. The people on-line with the exception of Linda are my closest friends. If I haven't said that before I say it now. You are my closest friends. But also, I think it says right on the side of every post in my bio: “Hey, I’m terminal.”
Now, culturally we don’t talk about things like sexual abuse, rape, incest, partner abuse, and no not caretaker abuse or parental abuse. We don’t talk about grief, or dying except in abstract terms. Except they aren’t abstract, they are extremely specific. And I was going through grief, and fear, and terror (and had been for some time) and people I knew, or the people who were friends on line, the people who cared about me didn’t want to talk about it. So I do what I do. I wrote about it. I made it so plain what I was talking about and wrote about it until, if I did it well, it seeped into your mind, it gagged at the back of your throat and it gave to you a gift: the vision of where I live.
Because as friends, that is what you would want to see. A REAL glimpse into my life. The books and selling them are but a small, small part of it. Linda is a larger part, my hands, my bruises, my struggling to breathe, my heart beating erratic, my heart stopping is so much more.
How long has your heart simply STOPPED while you were conscious; not a single beat in any chamber? There is a bitter taste, like metal, as you taste your mortality when it starts again (besides the enormous kick in the chest), because you realize, “This is it!”
See, when that happened, I couldn't play games in my mind anymore that maybe I am not degenerating, but it is a bad week. I was thinking, “Fuck, fuck, fuck, what if this was it, what if I had died right there! And what? Would my last moments or day be an petty argument with Linda, some pain, trying to get things done, but never seeming to get enough done… That's what I was focusing on? Is that it?”
I needed you to understand what I am going through because how I am seeing things and experiencing things is important to me. And becuase I like you.
If you only want a funny, sarcastic, lesbian, squirrel loving Elizabeth, then as important as you might be to me; I, the real Elizabeth, am not as important as your need to hold onto your world view (though false).
So yes, I knew that this would challenge some people, bend their view of the world and how they are comfortable. I was raped. It is okay, say it: ELIZABETH WAS RAPED, MANY, MANY TIMES! RAPED, CUT, TIED, BEATEN, BOUND and if you are someone who was raped, or a partner of someone who was raped you will know that things written upon the body cannot be unwritten. Elizabeth was raped. Elizabeth is dying. Not becoming less funny. Dying. DYING.
And when Kubler-Ross made a theory about grieving it was just that, a theory. Grieving is an ugly messy, business which often involves a lot of toilet paper or Kleenex. It is gritty, it is about hard stone facts that cannot be ignored. It is about staring out at something as the idea bounces around in your mind, about staring at a book, or an epee sword, or your arm or your leg or the mirror and realizing, that no, it is NEVER going back to normal. That no matter if you pray, or if you pour all your money into a medical hole, it is NEVER, EVER going to go back to the way it was. And indeed, you are never going to go back on even the smallest detail. That every day might be worst than the last and if you plan on going on, then you HAVE to look in that mirror. And it hurts like the cut of a knife on flesh, or the smell and tang of feelings and smelling your own flesh burning. It is not pleasant, it hurts, it is ugly and it is grief.
And yet, I CAN NOT hide away and pretend because it does not go away. I HAVE to look in the mirror. Which means if you are here, then you do too, or at least pick up the pieces afterward.
Elizabeth was raped. But in being raped and surviving, and in being beaten and rejected and surviving, and in standing up against bullies and being attacked for doing so and surviving; Elizabeth is strong enough to go on.
And that is my life right now. And that kind of pain and grief is going to be more and more of my life. Gritty days, and weeks where a good hour of almost pain free breathing will be a blessing. And long periods of time where even a momentary smile or a bit of joy in a person who in two days will not remember is the best Linda can hope for. That was why I wrote Grief and Hope. And while I was not given a choice about taking this ride, you were (I did say it wouldn't be boring!). You could read Grief and Hope or not. You can respond or not, or think about it or say, 'forget it, I’ve got enough on my plate to deal with this too.' That is your choice. I gave the gift, what you do with it is up to you.
For me, I continue to want to know how my friend’s lives are because I want to help them or make them better or simply be there. And how can I do that if I can’t even stand to look at them. See, if I can’t stand to look at my friend’s life, then I guess I’m not looking at my friend at all, but just some made up image in my mind. Which is why I said in Grief and Hope, that people could choose to be my friends or not. You don’t have to be a friend to read. Or one to comment.
When Joy, and the little grass and flowers grow through the cracks in the hard stone. And when personal Victory comes with her wings, and she WILL come, unless you are there, standing in the ashes of Grief, beside a person that, yes, was raped, was abused, has had to fight far more often than a human being should, then you won’t understand what is happening. When I go out and do my 8K in my racing wheelchair and I know and you KNOW that I will suffer and be in bed and be out of my mind in pain, literally, for days, and you see a picture of the smile at the start and finish; you know the cost of it, and what it means. Victory, clawed back; Joy fought for.
And you, like me will be able to cry tears of joy. That is what you get if you are a friend.
For the rest, it is just, “Wow, I don’t know how Elizabeth does it.”
I do hope you aren’t offended. Because I don’t want to offend, I want to share, to open myself up in a way that exposes me to every little slight, but also to show that I want to be with you. I want you as a part of my life. I want to share my life with you, every last second of it. For me, I don’t have anything else of greater value to give you. I’m sorry that I’m dying, but I am. But I am not sorry that I am taking chances, even in my writing to reach out and give people access to my secrets, my fears, the intimate details of my life. Grief is part of that. So, it seems is a day in bed.
9 hours ago