Thinking @ MindSay

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If I was at college this week, I'd have been seeing Dianne today.
Since I've agreed to attend another block of sessions, I really need to think about some issues I'm going to address.
As much as I'm going to despise it, I'll have to talk to her about that period of time that must not be discussed - 1996-2006. Or "5 to 15" as I call it when it's mentioned.
 
Regardless, there's a lot of things that are bothering me.
Though I'm starting to realise causes behind some of them - I'll get an idea, but then I'll doubt it - I'll ponder if it truly is the real reason behind something. Despite the fact I'm right about virtually everything, I have doubts if I'm right about this or not.
 
If only I could express my feelings through my creative assets like I used to.
I can't write, I can't draw - I haven't made any wav. mixes for ages, I'm starting to suck at Photography - the only thing I really have left are videos. Yes, I haven't lost my skill when it comes to writing scripts - but all these ideas I have, all the scripts I've written and planning sheets I've done - will they all be wasted?
 
If that's the case, I won't have anything left. Sigh.

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I finally managed to get nana's speakers working today.
Even after she was on the phone asking my aunty how to get them working - because she'd managed it before with a different set - Dixie worked it out and we had sound.

So nana was sat at her computer for most of the day playing Solitaire, Freecell and Purble Place.
Purble Place is proper random. It's this shitty little game for kids with matching and puzzles, but nana proper likes it.

I was laid on the bed playing a combination of Shadow The Hedgehog and Super Paper Mario.
With Super Paper Mario, I finished off the 2nd chapter and thought, oh fuck it - then went for the 3rd one.
I'm currently right at the end. I got to the boss but proper died because I didn't have enough HP and I was being proper careless, letting the twat eat me. It's such a SHIT game.

Nana made sandwiches with polony today.
I'm not sure if that was right. Polony is better just sliced up and nommed upon. I took some of it out and replaced it with a hotdog sausage and ate the polony alone. So I had a balance of both, I suppose.
Oh, and we had some pretty epic fucking muffins.

I only feel depressed because I've had my mind elsewhere all day.
Somewhere dark and forboding and filled with endless amounts of failure and despair.

I got a kick out of this dream, because so much of it is indeed exactly what I would do, were I presented with the situation in real life.

McD’s. Or something fast food related. I am frustrated, but really, the job situation in the area has pretty much dried up with the economy. So, I'm back to working a fast food job, which bites, but I try to make the best of it. We're actually not in Mayotown anymore - judging by the look of the city and comparing to places I've been, I think we're in Green Bay. I guess I'm trying to make new friends, but it's slow going. There's work, and helping at home, and trying to find things to do in a football town when you don't care about football.

Every so often, the place where I work will go on a skeleton staff, and take everyone else to do some community project. It's different every time, and this might be the reason I picked this place to work out of all of the places I'd hate working. But today, we're helping with a construction project at what's referred to as the lepers' clinic. We're not allowed inside, because you have to go through a special class to do that, but it feels good to be working outside in the sun, and doing something good.

And my interest is piqued. I decide that I like this place, and I go through the training class to be a volunteer. It's mostly just, "Hey, this is contagious, here's ways we protect ourselves," and some stuff on interacting with the patients, which I have down pretty well already because I'm drawn to the kids. I start spending all of my extra time there, but I'm kind of sneaking off. My family just thinks I'm working extra hours, and I know Mom would absolutely freak if she knew I was there.

Like I said, it's not actually leprosy, it's a muscle wasting disease. Kind of the same attitude as Shawshank Redemption, where everyone inside is 'innocent', they joke about being lepers because of the Bible reference - it's so contagious that people are scared of them. There are adults here, too, but I don't see them as much, I just hang out with the kids. Mostly, since they're losing motor skills, they like to color, or play smaller games and make puzzles, and throw a lot of humor around, which varies from the dry to the wacky goofy random to the inappropriate.

Everyone who has it does indeed die, it’s just a matter of time, which is what this place is for. Making that time a little more comfortable while you're waiting to die. When I'm here, I'm usually the only one in with the kids. There aren't a lot of volunteers, because people are really afraid of the disease. It's contagious through body fluids, not touch, and once it's inside, it basically just tells your body to dissolve all muscle tissue over time. It's more complicated than that, but that's the practical side.

The kids say they like me because I know how to play, but I had one little girl scoot up beside me once, while I was just sitting and watching them instead of interacting, laughing at their jokes, and I put an arm around her, just instinctively. She looked up at me with bright blue eyes and said, "That's why we like you. You're not afraid of us." And she's right. I went through the training deal, I know how to take care of myself, and these guys are just kids, too. They want the same things most kids want. They're not scary. When they get in trouble, it's for making bathroom humor, not threatening people. They're just kids. Kids need touch, kids need love.

Everybody does.

It manifests a little differently in adults. You want to stay in bed all the time, and sleep a lot. I end up accidentally having an encounter with an older woman, who was both cranky and salty at the time, and I liked her. So, I went to go find her later. Madeleine, I think. She gets such major chocolate cravings from the sickness (like I said, there are other things going on with it) that she eats almost nothing else. And she listens to music. All the freakin' time. It never stops. It's always loud, but she'll turn it down to about halfway if a nurse or I come in to talk. Never the same style two days in a row - I remember the week when she went from country to death metal to classical in the space of three days.

(Upon reflection, I want to meet someone who listens to nothing but death metal and classical. I think I'd get a kick out of how their mind works.)

There's a lot of 'control' over any fluids produced by the body while you're in the house. The main and simplest part of all of this is that all of us who don't live in the house shower immediately before we leave and go out into the rest of the world. I've been hiding that one from the family by going for a workout after I leave the house, so that I have to shower AGAIN, but in a context that's expected. The building muscle tone from said workouts is evidence, and my Mom approves of this.

But, there's one day when I'm chilling in the elevator, going down to the showers (or up, I don't remember how the house is constructed) and I sweep my hand across my forehead without thinking. And it burns like salt in a wound. Hmmm. Well, when I find a mirror, I'll check it out. I glance at my reflection, and realize that I had an open cut just above my eyebrow (heaven knows what THAT'S from, the boys and I were gently wrestling that morning, maybe it happened then*). I bite my lip the way I do when I'm nervous, thinking, well, maybe I'll luck out. There's no guarantee that there was anything on my skin there. But, I go and report it to the higher-ups, and they have me checked out.

Three days later, I’m told that I’ve got it. Hmmm.

My family needs to be told, because, well, I’m dying, and also, I just disappeared, since none of us who have it can go into the outside world. That’s an awkward conversation. Not a lot is known out there about this, just some overdramatized details. People think you can get it from touch, or from breathing the same air. People think you’re being lazy, and should just fight it rather than ‘let’ your muscles atrophy. People hear about the cravings, and think that your rationale is messed up, and you're going to try to infect as many people as possible. It's goofy. People are weird.

So, the disease itself needs to be explained to my parents, which the doctors do, and I explain it to my sisters. I'm not sure what's up with Signscout - he's the only other friend that I'm certain needs to know, but I think at the time I was also thinking that he had camp and wouldn't be able to get away anyway. Seriously, there's NO contact with the outside world - if I want anybody out there to know anything about me, I have to ask my sisters to tell them.

My Mom cries, of course. My sisters band together as I've seen them do before (and I'm filled with pride every time I see it), and swing into their 'problem-attacking' mode. They can't cure it, but they can sure come visit me and make me laugh so much it hurts, and play the random games with me. Mom doesn't visit very much, because it's hard for her to see me, and Dad stays with her or works a lot more hours.

I have my own room, and I can’t leave the clinic. I have the major chocolate craving, and I listen to all kinds of music all the time. Some of it's really insane - stuff I never would have thought to check out 'before'. I understand Madeleine now - you're going into some kind of unknown, and you can't take anything with you, but if you store memories of everything, maybe those will go with you. And if you can't use any of your muscles, you can at least take this in while you're lying there.

[By the way, if I ever AM really sick, and you come in and play Screamo for me, I am chucking a bedpan at you. Just sayin'. :)]

And that's the way things go. I have to eat chocolate, all the time. Sometimes I'll read a book, but I'm usually too tired to hold it up or turn the pages. It varies, day by day. Some days I'm okay, and I like to sit and read Calvin and Hobbes. Yeah, I could be reading great works of literature, but I've always loved Hobbes. I don't care that I have every strip memorized now, I still want to read it. Until the day when I’m really bored, and frustrated with this, and I ask the nurse to ask my doctor if I could have a treadmill that I could sit on the edge of the bed and use. I know I can’t walk, none of the adults can. It was just an idea I had. She smiles and says she’ll check, and my doctor thinks it’s a fine idea (she actually asked him while he was running treadmill with another doctor), so I get my treadmill.

Said little treadmill is my only possible explanation for what happened. Just that I was actually working the muscles, though I'm certain the idea was tried by other doctors in other clinics before. It wasn’t an idea for fighting it – I’d seen everyone else die, and I knew it was coming. I was just bored. But one day I realize that, actually, I’m sick of straight chocolate. I remember thinking, maybe if it had crackers or something in it, to break it up, but no more chocolate. And, dude, the music’s gotta stop. I’ve been listening to crazy French saxophone for awhile now, and it’s gotta stop.

What I want most is to go out in the woods. We’re apparently in Hawaii (when I woke up, I was quite entertained that my brain put Green Bay in Hawaii), because I recognize some of the plants as being Polynesian, but this is definitely an American clinic for the way things operate. (This might be another reason why Signscout's not in the picture - I don't think I'd demand that my friend come halfway across the Pacific just because I'm dying). I just want to go for a walk – a slow walk – and find some water or something, where the sun’s coming down through the leaves in places, and everything is green, and sit and breathe. For hours. I used to do that in the woods back home, whenever everything got too cluttered in my brain. I don’t care how wealthy you are, if you are able to go spend time in the woods when they’re beautiful, I don’t think it’s possible to be any richer than that.

I don’t know if I’m still dying, but the disease has either slowed, or stopped. There are days where I can even walk a little, although it's more like a slow shuffle. Santas and Didi, mostly Santas, still come almost every day to visit me. Santas helps redecorate my room, and it ends up looking a lot like hers back home, but with movie posters instead of her own artwork, and flowers that I like instead of her butterflies. Note: I don’t get the movie posters. I have never been a person for movie posters. And few of them are actually my taste. But whatever. It makes me happy to see her.

One of the posters is for an Adam Sandler movie called, “Noodles”. It’s a story he makes up to impress a girl about how he’s an artist who makes these pasta statue-creations all over the world, in random places, that will become part of the earth, because, "art should make the world better, not worse." Obviously, his ploy works until she realizes it's a ploy, and then she shoves him off a dock and he has an entertaining fall. By the time he gets out of the water, the girl's gone. He wanders around that night trying to sort this out, and (he's in Sydney) he wanders across one of his creations surrounded by a pile of litter. He's looking at it, and thinking that the noodles don't matter anymore, because the girl's gone. But, there's some kind of headlights or something that fall on it in a certain way, and he sees something different, and gets inspired. He cleans up the trash, then cleans up the street, then cleans up a decent section of the city, up until sunrise. And then he goes out into the world, and everything that he's been doing before changes. He doesn't notice girls anymore, and sees a lot of them as being pretty shallow. He's still an artist, but it's on the side, just a personal expression - his big thing is this huge Cleanup Australia project that he organizes. And at the end of the movie, he runs into the girl again, because she's a volunteer for things like this, but she didn't know he was at the head of it. She asks him why he's doing this, and he gets this funny smile, chucks a pop can into a wastebasket, and says, "Artists should make the world better, not worse." And they get together again.

I can only assume Santas picked the poster because of the volunteer/save the planet aspect - Adam Sandler movies, to me, usually have him playing exactly the same kind of character every time, and pretty close to the same plot. But, one night, I have a dream where I encounter A.S, and get into an argument with him about the way his characters always act with girls. Wake up mildly entertained, the sun’s coming in, and Santas has just walked in the door with tea for both of us. Smile, tell her about the dream, she looks at me, and looks at the poster next to my bed, which is an arrangement of photos of about thirty of these pasta creations from the movie, and just shakes her head in her mannerism.

I realize then that, while my doctors are trying to figure out if I'm still dying or if I might actually be the first person to live through this disease, I don't care. Y'know? It doesn't matter if I'm 'living or dying' by their definition. My sister just came in, the sun's here, we're all laughing, and I can be here for this moment. That's all the 'living' I need.

_{*I should maybe mention, this dream played out like my life, like I was really living it, day-to-day basis. I thought it was real. And there were a lot of random things that happened on one day or another that I didn't describe here, because, well, you don't tell everybody everything that happens in your life. This got way long as it is.}

Been playing a dear friend's songs recently, and this is one of my favorites.  Sort of sums up much of what lately I'm feeling on the subject of love and relationships and life in general. 

 

Maybe This Time

 

It was a late December night

And I wasn't thinking about much

It was cold but it was alright

I still had my magic touch

Then I saw you in that doorway

Braided hair and eyes like fire

And I was thinking to myself

Maybe this time.

 

You know a gypsy woman told me

That I would allways be like this

I might have the best of all things

And trade it all for just one kiss

Always searching for that rainbow

Or getting lost inside a smile

And always thinking

Maybe this time.

 

It was late and we were dancing

And the music played so loud

We were locked into each other

We were locked outside the crowd

Just like a newborn baby

I see it all so fresh and clear

Call it wishful thinking

But maybe this time.

 

 

Copyright J.Ward

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