Sunday, December 13, 2009

This girl's not all here.

Why does my hope in the future and my masturbation seem linked (my masturbation hits new lows....in NUMBERS!)? And does this mean those slightly air-headed optimist girls who were smelling leaves of tree at my uni and saying, “I am becoming one with our mother!” were getting multiple orgasms every night? Disturbing, mainly because I think actually grabbing parts of my mother while sniffing, and inhaling with orgasmic bliss would not only create another Family Legend but require some form of therapy (for her!). Me, I’m just sitting here wondering what flavor my mother’s ankle tastes like.

Yes, I have a fever. I thought it had broken but now I am starting to doubt. Days of fever, high fever and vivid dreaming (last night I was in a time machine and I kept going to where the nuclear bombs went off, because it was really exciting, and I didn’t need to worry about death by radiation poisoning), high heat (no night sweats as no sweating), and loss of vision. I couldn’t eat or drink, no pills for a time, just 12 hours of sleep, short waking and sleep, where every heart beat was erratic. I stayed prone to keep the heart pain down. I lost my dream. This morning, I did not get my hair cut and colored.

It is hard to know if I am upslope going quickly downhill or in the middle of the storm when I am awake only six hours a day, and so weak I can’t move myself. Can’t swallow.

There was a draw of blood on Wednesday, a LOT more blood than original expected (about 12 oz). I found Nordic Goth Rock with female leads to be helpful in avoiding prolonged screaming (hate Needle Phobia, love the protocol we made). Then told somewhere not to do much for two days. Went boxing the next night to sweat (that’s not ‘much’ or ‘activity’ right? See, same ole ‘Anything ya can do, I can do TWICE as good!” Elizabeth – just needs to learn that she is SICK, real bad genuine sick). As it was near the end, we did push-up, sit up, and sparring. After push-ups I couldn’t pull myself back into the chair. No matter how I tried I couldn’t. That’s never happened to me. Never.

I sparred with four guys: the assistant coach, and a new guy (Ian goes, “Liz, this one really is ‘NON-CONTACT’” – I was good, I didn’t hit him once), and an ex-fighter as well as one six foot plus guy who is BIG, and hits like a truck running over you. See, that’s because I told him that if he didn’t hit me hard enough to knock my wheelchair to tilt backwards at 45 degrees while I leaned into the punch, he couldn’t hit me fast enough. So yeah, if I ever sat back, I went over backwards. And this guy could HIT, and was fast. Linda said she was off by the side whispering, “Your face, cover your face!” (When I get tired I drop a glove).

Then the next morning a long medical, I trained a night worker and on Friday I was in a raging fever. Didn’t stop me. I have a medical appointment for Monday morning and Wednesday too.

Time for me to drop the fake smile. Friday night I didn’t know where I was, or what day it was or anything. I just took it, and I wear the marks of it, because it wore on me. Is boxing helping me? I don’t know. I have no reason to go to tomorrow. Or the next day. Random bruises this morning, large ones.

I was going to get a hair cut. That was the dream that kept me going forward, wasn't it? I think the money for that went tonight to get medicine.

I will not live with Mirrors of Sorrow. My house will not become a mansion to one vision of me complaining about new feedback forms needed to given to my students, or another where I am pushing up a hill on a jog, or another where I am racing my wheelchair down a hill. I live, while I live, here. But what IS here? I have nothing I want to dream about in my in sleep. I wake and struggle to breathe, to turn my head, one arm is numb. If I am moved to a home, I will die, Linda says I will die. I will sleep into ashes.

I have the No!’s No to too many tests, yet there is always a reason it MUST be... No to the abuse of medicos. No to social obligation or screw ups of the home care. In the last two weeks I am down to 1 regular worker and only let in the worker 25% of the time, the rest has been the manager, as I lay in bed, asleep, or unable to move. Sometimes, often by evening, I so confused I am unable to understand much, nor able to make the most simple of decisions: “Do you want lip balm or a drink?” I stare confused, a furrow on my brow. I worry because the person here wants something but I don’t know what the words they say mean, what I am supposed to do? If I could think, or breathe, if I had a full 60 seconds, but in seconds they ask more questions. “Are you strong enough to move to the wheelchair? Do you want to go to the den? Do you need to go to the bathroom?……” The girl is not all here, please try later.

I sleep now, and go tomorrow. I have postcards, half done, I don’t know when I did them, I hope I remember them when I post this. So much I look at in Amazement. So many think they understand not remembering, but when a person is sick and doesn’t know the names of anyone in their in-box because they haven’t been able to renew the memory of them every day...it is hard to believe, harder to live. I forgot what Cheryl looks like.

My brain is not what I had. So what? 'Though I have gift, have all knowledge, can fathom all mysteries, if I have not love, I gain NOTHING. If I have a determination, a belief that can move mountains, can do the impossible, but have not love, I am nothing. Love keeps no record of wrongs. Love always protects, always hopes, and always perseveres.' I might have the full theory of Pi forgotten, but I have people who like getting my postcards. And I like sending them. What is more important, really? Can the Western world stand to bear the cost of one woman whose only use is that she keeps reminding people, irritatingly, that how they treat her and how they treat the Prime Minister is the same. She reminds doctors and social workers what the term 'Public SERVANT' means, and who really is the center of the room. She sends gifts, she sends postcards.

I started sending postcards because I realized that to be fortunate to do anything: to be able to have a disease and through rehab, or determination accomplish X, or to travel, it just wasn’t ENOUGH. Because the great and silent things are done one day at a time, one week at a time, those unsung heroes in places who still give a damn, in hospitals, in government, in schools, so many callings. One day at a time, one person at a time, until the next day. I have no future, and yet I go on, because I have the love of many, and the care of two extraordinary women, Linda and Cheryl. If you have cared enough to keep an open heart, to live without hate, without hurting deliberately, then your life far surpasses everything I have ever done. I fall, I fail, I get hit in the head a LOT, but I keep going. It seems like the going is coming to a slowing. I want to go to Sakura-con. If you can get me alive to Sakura-con, that is my Xmas, my mid-winter wish. Of course, if I make it, I will have the next wish (The Eisner Awards?). But I have, says this body, and my battered soul, lived enough. It is okay.

Is it? Has the fire been burned out? Time for sleep.

16 comments:

cheryl g said...

I am hoping your fever does break today. I think your body may be trying to tell you to slow down a bit, maybe only push your self 90% at boxing instead of doing your usual 125%. Yeah Sis, it is time to learn that you are really sick and you can’t push your body at the same levels you used to.

It took me a bit last night but now I understand that you are too weak to make decisions and can’t handle rapid fire questions. I won’t do that to you again. I am aware that you forget what I look like and even who I am between visits. So far you still know I am a good person you feel safe with when I see you again and you “remember” me pretty quickly. I know who you are and that you are my Sis – I will remember for both of us.

You say I am extraordinary but I just do what I do, what needs to be done. You are extraordinary. You endure so much and remain loving and generous and you still work to make a difference in the world.

Yes, keep going. We have Sakura-con to work towards. There is anime to watch and manga to read. The next season of Bones is really good and well worth hanging on for. Try as best you can. No matter what I will be here.

yanub said...

I think it is great for you to go to Sakuracon again! You have so much fun when you go. Yes, that is a good idea.

It's OK to not always be able to do what you would prefer to do. I finally have some Japanese language cds to use, but I can't right now because this time of year I am always on the verge of losing my voice because of allergies. And if I lose it, it will be gone a month, so I have to preserve it. But I don't want to lose ground, so I am ramping up my listening and reading instead. Maybe the same for you? Can you do something else instead of boxing? Can you, maybe, dance? Or play basketball? Or badminton again? Or just punch the heavy bag? I wouldn't suggest you doing nothing, because if you decide to sit around and wait for Godot, you are just going to get bored. But you really do need to find a way to balance your activity, because it isn't helpful to you to be so worn out from sparring that you spend the next several days nearly unable to move or breathe or digest.

Neil said...

Beth, you're amazing. Such beautiful cards... I don't see anything even close to that here in darkest Saskatchewan.

And over 3000 of them? There should be some sort of Nobel prize for amateur humanitarianism - I'm not saying you should win it: it should be named after you!

The browser Opera hates me; I tried to send the above drivel to the Postcard project earlier, and it wouldn't go, I think.

My response to your post here is to say that as long as you can post, I'll be reading. When you can't post, I'll be caring. If/when you die, I'll keep remembering you, and honouring your memory.

I'm also sending positive energy for Linda because I know she needs it too. And Cheryl.

Love and zen hugs,
Neil
Regina, where it's -31C with a wind chill of -41

SharonMV said...

Dear Beth,
You are a hero too, but you will never be unsung. Not as long as I or all the others who love you & are loved by you have breath.

I hope the fever goes soon, now! if possible. I hate fever dreams. During fevers I dream that the house is on fire,or that I can see flames through the floor boards, sometimes it is lava. I'm glad I don't have the radiation theme, but the time-traveling part is interesting.

I wish you could get some IV fluid replenishment (I know the needle would be unpleasant), that used to help me a lot when I was dehydrated by fevers. Try to drink, please! even a little will help.

Yes, you will go to Sakura-con. I remember how much you enjoyed it last time. And the wonderful present you sent me (see, I'm greedy - not always a nice girl!) Plus I love my vicarious experiences reading about it in the blog.

Restful Sleep for you and only pleasant dreams.

Sharon

JaneB said...

I hope you manage to find the pace between 'full on' and 'stop'. Just balancing in the narrow gap of living must take so much effort each day... that you find the capacity to send postcards is continually surprising and impressive. I wish you sweet dreams of buxom cat-girls showing you round Sakura-con and bringing you a special copy of Loveless volume 9

Raccoon said...

I am worried for you, about you.

I don't know about anything else, but I'm looking forward to the Eisner awards, and Comic-con. And finally meeting you in person.

Sparring does not mean hitting you so hard that it knocks you over. Of course, this is still better than badminton. It doesn't seem that people are going out of their way to avoid going against you.

wendryn said...

I hope your fever breaks.

You are an amazing person. You help people learn, or remember, reasons to fight to live, to go on, to keep going, to be kind and careful and gentle and, most of all, to love. You care about people you have never met. You work hard, every day, just to live, and yet you also find the energy to think about others and to try to make their lives better.

I hope you make it to Sakura-con. I hope you keep breathing. I hope you take time to take care of yourself a little - we worry about you.

Linda and Cheryl, hugs and love and support, for what little that means from here. You are both pretty amazing yourselves.

Aviatrix said...

I can see that after so many doctors who don't know what they are talking about, you aren't inclined to obey one who tells you to take it easy. You make me laugh when it is the young guy in the class who is non-contact and not the woman in a wheelchair who has had multiple mini-strokes and neurological damage. I want to say, every time, "That CAN'T be good for you! Isn't there a sport you can do that doesn't involve being hit in the head?" But the whole point in staying alive is to not have to stop living your life, so you keep on living.

rachelcreative said...

This disease messes with your brain so it stands to reason it messes with your moods too.

I'd be feeling pretty knocked about just from the blood appointment and needle with your phobia. Go easy on yourself please? You don't have to have all the ansers right this second. Though I'm happy to hear you blogging in trying to figure stuff out.

Hoping you get some sleep and some rest (preferably with peaceful dreams - I can hope!). And that the fever breaks and your mind is clearer.

A double dose of letter with pop up should be with you soon. Double so you have a letter and pop up for christmas when the post gets all snarled up.

FridaWrites said...

Is the fever better, I hope? Steady as possible may help with exercise--overdoing might lead to too much of a crash, while doing a little less might enable you to do it again sooner. I'm one to talk in this regard--I constantly push too much and then get knocked down on my rear for a few days.

When is Sakura-con?

Veralidaine said...

Sakura Con seems far away now, but every day it is a day closer. One day at a time it will get closer until it is time to go. I think that you are surviving fueled by willpower alone already, so as long as you still want to make it to Sakura Con, you will get there.

I agree with Cheryl--you are extraordinary. So are Cheryl and Linda of course, and so really is the whole family you've made for yourself with this blog.

I'm going to send you an email later today, but don't feel obligated to reply, especially if you should be RESTING so that your fever hopefully breaks. I know you read your emails. I love to hear from you always, but not at the expense of your chance of having another day good enough for boxing soon (and yes as Cheryl said maybe 90% instead of 125% next time would be good).

Stephanie said...

Thinking about you a lot and sending lots of mental *hugs*. You know, you're a lot like Chanukah. We celebrate that the oil candles miraculously remained lit for the eight days it took to make new oil. You just keep fighting and fighting even when you should rest a little bit. I wish I had that kind of fight in me.

I just called you a miracle. That makes me giggle. I'm not sure I believe in miracles. :P In any case I'm thinking about you, Elizabeth.

Dagny said...

directed here by Aviatrix.

I have much to read. And rendered speechless for the moment.

I hope your fever breaks.

Elizabeth McClung said...

Stephanie: I think all humans are miracles in a way, and some in more ways than one, thanks, I sent you something, I think, I hope exams are okay.

Cheryl: Fever broken I think, dunno, slowing down a bit makes me feel really tired instead of in insane amounts of pain - trying to figure out which I prefer.

Yes, my time and other people's time scale are different and I don't need people to talk in slow-motion, not yet, but slower. And yes, too weak for many of the thousands of little descisions, and if they HAVE to be made, I conserve energy by not making them at all.

Yanub: Prudence regarding the voice is a good thing, as losing it for a month would be more than annoying, it would be..um....mega-annoying (oh the way I have with words!). I still need something that causes me to sweat, and Badminton was barely making the bill, while Boxing does GREAT, Dance, neh. Unless it was with a grizzly but I think I would bleed more than sweat, gator wrestling?

Sharon: Yes, IV replentishment would be good, and I think that they have that for people who are older and a GP has set up something for them, or those who are in a home. So far, the truce has been, VIHA nursing pretends I don't exist and, well, I'm not sure what I get out of it, except they don't keep promises.

Jane: You mean like in a Arcade game when they say that there are more speeds than full reverse and full throttle? Liars all!

Raccoon: I too am looking forward to meeting you in person, though sadly the person who may finally make it will be a bit of a shadow to the person who started this blog. But that is the nature of this disease, it steals away everything beloved.

I have to say that I am not exactly at peace but I do realize that I can continue my efforts to keep my body living and still the degeration to things like sequencing, ability to remember, to deal with complex situations, will degenerate. But I can watch anime and enjoy it, even if I may not remember watching it. It sucks but it is what it is.

Oh, it doesn't - I thought if I get knocked out of my wheelchair each blow, THEN I should use some headgear!

Wendryn: Yeah, I never quite get how Linda talks about how I can do less and less and have less function mentally and physically and yet still work more than any person she knows - she must mean in total commitment, not actual productivity.

Lene Andersen said...

If my will with your will and Linda and Cheryl's will and the will of all the people who love you all join forces, I bet we can get you to Sakura-con. And beyond. Whatever you want, we'll do our best to help you get there.

SharonMV said...

Dear Beth,
Hope you had some fun today, did something that you enjoy. Thinking of you every day. Stickers should have arrived to your PO box.

Sharon