Volunteer @ MindSay

Fuzzy was moved into a room late yesterday.They are monitoring his heart and his kidneys,slowly taking him off oxygen.He is still having diaherria  though. they cant get that under control.Peggy was very tired this morning when I talked with her. She looked it yesterday,but today you hear it in her voice. She has today covered.Hopefully she can get some sleep while her mom takes dialysis, as her aunt will pick her mom up afterwards.Peggy plans to go home and try to sleep a bit. She needs to. I'm concerned about her. She is gonna collaspe if she doesn't rest soon...She will probably get me to help her tomorrow...
James and I went yard sale-ing  this morning. it gives us something to do and we never spend much. Maybe a few dollars. Its our Saturday morning routine! We found Morgan a drum set for xbox today! called and woke him up to ask if he wanted them...just $7.00!!! They put everything at half price after 11 am! They are gonna have a great yard sale by doing this and they were cheap anyway! Orginally the drums were $15.00!  Came with the rock revolution game. I just hope they work! She said they did and they seem to be in great shape! Wont know til Morgan uses them!
Last weekend we went to Hillsville to the huge flea market there. I didnt think it was as crowded as in years past. Because of the recession many didn't travel for it. Even the vendors were down.We still enjoyed it, just getting away for a day was good! Got to see Morgan too, as he popped home for the weekend cause he bought a drum set and had to pick up his glasses that came in.It was hot though last weekend! I was ready to quit at 2, but James insisted we rest a bit then plow on some more! I was wore out! we got there at 9 that morning, and we finally quit about 4:30...still about 3-4 hours left that next day to cover it all. We got to our room about 5 and collasped. I got a shower and saw that I was sunburned! ouch! I put sunscreen on! anyway, we walked over to Sagebrush to eat. we were too beat to drive anywhere. waited an hour to sit, then waited 30 mintues for our food.... Finished at 8 then went back to room and fell into bed! we were asleep by 10! whew! Up at 7 next day and started again! we finished about 10:30...I will never do that again! I cant take the heat anymore. I feel like i'm gonna pass out in it. today while yard sale-ing I felt like it again. I get really weak all of a sudden and feel shaky, and cant get a good breath... I dont know what it is...but it bothers me. Since I turned 46 this year, I feel like my body is deserting me... Perimenopause... Hot flashes, cold,chills, now this with the heat. I get too hot now...Maybe I should get checked out by the doctor. Mood swings too! I can bite someones head off if they cross me at the wrong time of the month now!!!I cant help it either. Family will just have to deal with it!! looks like I've got a ways to go before I'm out. Most of my friends tell me it ends about the time you turn 50ish!! So I'm looking at 4 more years of this!??? Ouch!!!
We went to the West game last night..It was really wierd with Ariana not cheering... Still saw a lot of parents there whose kids graduated with Ariana. Even saw some there home for the weekend from college. Just as 4th quarter started,it starts raining...I look at James and start laughing...we wait a bit, and it starts getting harder, so pack up and leave. passed several others and we said"No need to get wet this year! Not sitting in any rain!" everyone laughed. last year see, it practically rained every football game! and we had to stay then! With Ariana cheering and James head of concessions, there was no leaving. Sat under an umbrella most of the season and learned to deal with getting wet! So, last night was fun to get up and leave with everyone else!! We sat in car and listened to the rest of the game...West won, 28-21...Its a wonder though as many passes as they threw and missed,dropped or whatever...They lost over half the team as most were Sr.'s. last years team was great..
Of course all the parents still there saw James and tried to get him back,or tell him they miss him doing concessions! Some even told him that it went downhill a bit! Oh well! It's time for other parents to step up to the plate and do it!! The new couple that took over the concessions said they didnt really know just how much work it took to keep it up! Ha! We told em!!its like having a second job with no pay! and then no other parents want to help.."Oh I have to see my child play!" what's one night??? oh well, not our concern anymore! we will go to most of the home games I guess. I especially want to see Homecoming... the athletic director gave James a pass for this year, for all the years he put in as head of concessions. Old saying goes, no one appreciates you until you aren't there!
Wow! 2 days at once on here1 I'm on a roll!!

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.}

President-Elect Barack Obama has called for a National Day of Service on Martin Luther King Jr. Day — Monday, Jan. 19.

In the President-Elect's own words:

"When you choose to serve — whether it’s your nation, your community or simply your neighborhood — you are connected to that fundamental American ideal that we want life, liberty and the pursuit of happiness not just for ourselves, but for all Americans. That’s why it’s called the American dream."

Ready to volunteer? Visit USAservice.org to find a service event taking place in your community, and sign up to take part.

I have been assigned a mentor for the remainder of my training at the Chinese Gardens. She is knowledgeable, elegant and very judgmental. My fellow mentoreeeeeeee is a guy named Les who is going to have a hellava time getting certified.  Right now the process involves shadowing experienced guides in order to see their techniques, reading the manual, and the book published about the garden's poetry.


I, of course, did all of these my first month as a greeter in addition to:
two books on Chinese history including the Imperial Dynasties,
two on Chinese Architecture,
two on art motifs and symbols,
a rare book I forked out $60 for on the actual construction of Chinese Scholar Gardens,
books on Ming furniture as a metaphor for Mind life.
Today on Amazon I ordered a Max Weber anthropological treatment of Confucianism and Taoism in Ming China and a revisionist visit to the practice foot binding.

I have also at any opportunity grabbed people I know to give them tours of the garden and volunteered as a floating docent (no I was not high) at specific locations during free events. I think the volunteer coordinator knows I am working hard. I even gave a whole tour when a guide failed to show up for a private tour.

Meanwhile Les says he "hasn't actually had time to wrap his mind around the tour thing yet".  Les has missed two sessions and told me yesterday that he wants the theme of his tour not to be fact based but a multi sensory experience.  I was told that my challenge for assembling a tour would be staying within the 45 minute time frame and Les needed to get a tour together. I prefer the challenge I have been given.

Next week we get another horticultural tour - I carry Bailey's manual of cultivated plants with me in case the gardeners get something wrong which they did with a relative of citrus. And then a pronunciation session with a mandarin scholar. After that we have private sessions with our mentor doing our entire tour and present it to the other docents  for certification :  pass or fail. If this sounds like the chinese civil service system developed in Tang China it would be a fair analogy as there are so many  elements to the garden: cultural historical practical horticultural symbolic factual and metaphorical that  it takes much research and passion to do it justice and any tour will only be skimming the surface. Luckily for me I love the process of learning something inside and out, meeting people within a framework of expectations and sharing that passion. And in college I worked my ass off too and was good at setting goals for myself and meeting them.


I assume I will be certified and giving independent tours by early November.... just in time for the Camellias and Wintersweet to be blooming. My other challenge (personally) will be to avoid "the know it all thing" with my mentor as she has already made three not very important errors of fact and I do not intend to point that out to her.  Her penchant for correcting every little thing I say tickles that tendency in me and I have to continually resist it within. When I was an undergrad and graduate student too ..duh... I didn't hesitate to correct the teacher but now i see no value in it as they are small points anyway. Relationships are more important that correctness. And humility kinder to oneself and others than being right and letting all know. But geez. I AM writing this blog. ok I am not perfect. oy. Happy Sukkot Havarim.

Today, in order, This is what i have to do after im done eating:

 

1. Deliver the remaining 21 catalouges (i delivered 47 last night)

 

2 OR 3. Deliver as much of the 200 flyers as i can before the things listed below

 

3 OR 2.  Vacuum my room

 

4. (HOPEFULLY) Take a shower if theres time

 

5. Volunteer for a couple hours

 

6. Go to my cousins' b-day party

 

 

 

I know theres people out there with MUCH more work to do than I. I'm not complaining, I'm just stating that I have a lot more work than usual to do today.

 

-:|Kristal:|