My disease, it seems is at a stage where: I have all the things that are precious to me, and if I permanently destroy half of them, I might live longer, but in the end, everything will be destroyed (and then I die). So this week I am sending out many nice packages, I think 12. So my life feel like it is if I had to chose ONLY four of them, the most precious four KNOWING that Linda would smash at least 1-3 of them and the other eight. I would be emotionally invested in all of them, plus having to chose the most precious of those among the precious of my life while KNOWING that IF I am lucky, half or less might survive. See, because my disease will destroy the rest. Does that make it clear? And if I don’t act very quickly, all of them are smashed.Today, I am sad. They say that my disease makes me think like a child. I have ‘regressive’ thinking. So while I might have adult Elizabeth language it is five year old or 8 year old Beth talking.
And I am sad. Adults are telling me I have to do this or that. They get upset because I can’t do things fast enough. Or they just leave me alone. And I don’t understand that. I don’t know what I did. I know that in some way this disease I have is my fault. I know that because that is how people act. I don’t really understand all the words but they act like I shouldn’t be like this so it must be my fault somehow. Since if in doubt, as a child, it is probably your fault.
Someone will punish me, or worse, ignore me, and leave me by myself. Only if I am lucky will they explain it to me.My disease rips out memory, so I spend much time repeating every day the things I need to remember. I remember things by picture mostly. I don’t know what I did but I know that I made people upset as they went away. We were having fun and they went away. I try very hard to write interesting things and have nice pictures on the blog. But it isn't enough and I don’t know why. Maybe you can know? You can look at my memories, to see, or what my disease leaves me.
I don’t have tea parties, I don’t have human contact and I don’t go outside. People can’t come see me, but they sometimes write me. But now, they don’t. I think they are busy. I had a lot of parties like this where I invited people and no one came. At first I was told that I hadn’t told them correctly but later, over time, I was told that by being me, I cause pain to others.I am the person that people do not like to be around because I cause them pain. That is what I was told. I was told that the way I speak the truth, plainly, pains people. I was told that the way I believe things pains people. Also people fear me, or fear hurting me, so they don't talk to me, or they fear hurting me so they don't see me or send things to me, or be around me. That is who I am.
Right now I am doing postcards and that pains me. I need to find in my head the one postcard a person will love above all others, whether they care about me or not. To me, the opposite of love is Apathy. Love is where you care about a person so that you want them to feel the best they can. I love hundreds of people and try, as I can to make them feel good, make them feel good about themselves. Apathy is where you turn that switch off. You don’t feel anything, they could be happy, they could be sad, but so what? That to me is worse than hate. And yet, people don’t hate me, they just….stop.My landscape is very dark. Linda says I am supposed to let people know that back to mid March, none of the things bought except the baby monitors, or the things off the wish list that were put as purchased have come so you might need to talk to the vendor including: (Lunar Legend 5&6, Mozart Question, Emma 8, all four of the international stamps, the ‘forever’ stamps, Nodame Cantabile 12,Law and Order 8 and Town of Evening Calm – it’s okay, I bought the last two myself, I bought many of them, or Cheryl did, but the ones we didn’t, most are still missing, so please let your vendors know). That isn’t supposed to matter. No letters this week, which isn’t supposed to matter. Except I am supposed to destroy part of my life, and I am doing it alone. Very much alone.
My grandmother died, my living one, who was born in Alberta and lived in a Sod hut as a child. I wasn’t told when she died, I know it was recent, and that there was an obituary but I wasn’t sent that either. But it is okay as I visited her recently and she was the same curious person and we talked about China, Russia, Venice, the UK and different museums. Her body is staying in the morgue. Her children aren’t having a memorial service, or her cremation as one of them has a road trip planned, and leave soon. Then other people have vacations planned, trips through Europe, so they will remember and honor their mother when it is, convenient. I think of her wishes and her body and that people don’t put down they want to be cremated so they can lie there, frozen while people go on vacations. Because they are BUSY after all. I guess I say this because I can understand all to well the comments, because while every day, while I am work alone on not dying, that doesn’t mean that there isn’t a pile of things to do at work and people aren’t behind on the cleaning, or busy with…. I get that, sort of, adult Elizabeth. Child Beth doesn’t really get it at all. It hurts and yet, I am alone. Grandma is gone and yet, we don’t have her death service until everyone’s vacations are out of the way? Apathy.
I have the pinwheel because I am a child and I like to see it go around. I like the fireflies and I like the lights.
But people tell me not to go to the lights. My Grandma flew on a mail plane to the arctic ocean and pitched a tent when she turned 65 and camped and watched the Inuit. Then travelled China (twice) and was followed in Communist Russia, she cruised the world on education cruises and visited most continents. I learned to love other cultures from her. She was a cold woman, in some ways heartless and disapproved of me until near the end, when I don’t think she knew me. But she liked Linda. Linda is good. I am pain. She fed her children as a single mother in the 50’s. That counts for something. At least to me. She cheated at games every now and then. I don’t know her that well because she wasn’t easy to know. I don’t want to be like that, a list of accomplishments and that is all people know. And yet, I am alone, always alone. Vulnerable, open, exposed, hurt, alone. That is how I write, and because I write that way, it makes it easier to be hurt, it makes it easier to feel so alone, when people back away saying, “I don’t know anything about that.” Like I do? I’m making hard, hard decisions, painful ones, and I’m trying to share that, while I can explain it.The Beth now can only say that I won’t be able to go out much anymore. And when the sun shines, it doesn’t shine for me. Because I am inside. That is why I want DVD’s to watch. That is why I like books. A person can feel lonely, alone, in pain and have a book.
The book or manga doesn’t take that away that feeling, it just makes it so the mind has a plushie, a teddy bear to hug. I wish I could read 'adult' books. But I can't. Only manga, or Young Adult sometimes. And I don’t have solutions to these really hard things, I just have ways to survive emotionally until next week, or tomorrow, or the week after. Except I don’t. So I cry. And another day passes and something I love is destroyed.I am desperate, and I think and hurt like a child, and I don’t know where everyone went. Or maybe I don’t understand. I just know that it hurts inside, in my heart. And I know that people define me as they act toward me.
Cheryl and Linda are waiting for me at Postcards. I have to help them, because they help me. They hold me sometimes. Cheryl got me the thank you cards I sent out this week. They are nice. Cheryl acts like I am special so sometimes, I feel special. I still feel afraid, and I still am losing things I love in my body and my life, but I feel special. I have to go and try to make other people feel that.
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