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.
25 minutes ago