Friday, November 30, 2007
So, hey, I want to be popular. Doesn’t everyone? But the fact is, I’m sitting here trying to imagine what people who know a lot about socks might find interesting, and coming up with nada. So lets do the top 5 list instead.
Top 5 reasons you DON’T want to be my home care worker:
1) I might die with you watching. Personally I don’t believe this will happen, I think I will spontaneously combust one day. But from the amount of home care workers who say, “Don’t you die on me.” This seems to be a big fear. Personally I am more worried about #2
2) I will fall on you and kill you. Occasionally I have to use a walker to get into the bathroom. There seems a height requirement for being my home care worker and if you are over 5’2” and 103 lbs then you aren’t sent to me (I am 6’3”). Two weeks ago I had an “incident” with this very nice and VERY tiny college student who seems to be about 4’9”. I literally don’t have any memory beyond the first minutes so she left while I was still in lala land. I do remember keeling over from my wheelchair almost on top of her. So I asked when I saw her yesterday, “Um…did I crush you, or break any bones last time?” Thar she blows! Watch it, watch it: TIMBER!
3) I will offend you. This is just a given since not a lot of LGBT goths seem to go into home care. So many many times I have had a long enthusiastic descriptions of this boy love anime I am watching (“so then Ako dressed up as a Geisha and Seiko found and ravaged him in the garden house!”) and I finally remember I am dominating the conversation. “So do you belong to any clubs at college?” I ask the fresh faced 21 year old, “like….anime, maybe?” They get silent for a long time then say, “Well, I am the president of the Christian Student Prayer Group.” OH CRAP!
Or I will tell how Linda smuggled vibrators across the border as “toys”; or ask them if I look sexy because why doesn’t Linda wake me up for sex anymore? (remember I am home a LOT and very lonely). Or (actually happened), be showing some nice photos I took and then have the slideshow start showing some pictures of Linda and I making out to a catholic caregiver. Or I will enthuse over some skull item or start calling pictures of fairies eating from the eye-sockets of humans “cute!”
4) I have a lot of phobias and issues. And there is an actual book we printed out for caregivers (the care giver office tried to destroy all the copies but we just printed more). Here are some excerpts:
OCD: "Her particular issues are “Germs”, food (the last inch of drink is often “unclean”, food which is not “fresh” is “unclean”…."
Communication: ……“If she cannot move her fingers, call her name, and see if her eyes focus on you. If so, tell her, one blink for yes (or two for no) and ask her the questions. Make sure that her fainting isn’t taken as a “yes””
Night routine: …. “Because she has nightmares she may not want to go to sleep at 1am. So she needs the reminder if she’s not already getting ready for bed at 1am.”
5) I talk a lot; however I know nothing of TV shows from the last year or two or any current events for the last 10 months. If a bridge collapsed, I don’t know. I will however try to hide my EXTREME disappointment if you are unaware of, for example, the group of US black writers moved to Paris in the early to mid 20th century to write detective fiction. I may also just state while you are speaking, “I’m sorry, I know they teach everyone that at school, but…it’s a lie.” (really, I’m trying to cure myself of this habit but come ON, the cause of the civil war was slavery? Columbus discovered the Americas?)
Bonus: If you try to cheer me up, you are almost certain to leave depressed. I work with words all the time. So when I am depressed and someone goes all “Come on, the sun is shining!” I am more likely to say, “And how will a melenoma make me feel better?”
Linda learned early that using a “happy voice” on me is like poking a bear. And scripture? Accepting Jesus? The last time I was pissed and a woman tried to get me to accept Jesus she left telling me she would be back to prove to me that God never tried to get Adam to mate with animals. She didn’t return. I’ve read the bible from cover to cover many times and had it memorized by chapter by age 11 (my father tested me). Unless you want me to tell you the first time sarcasm appeared in the bible (Job 12:1) or all the times God’s selected people prayed for death (including Jesus), you might not want to hit that hornet nest too hard. I always find it nice to open with, did you know the third recorded relationship in the bible was polygamous? Or, “are you ready to castrate yourself as Christ asks of you?”
The sad truth is that I spend more time trying walk the meta-truth aspects of the bible than most of the people who try to convert me. It is just they aren’t yet ready to take Jesus as their Zombie leader and Christ as their lesbian lover (this might go back to #3: “I will offend you”).
Okay that was REALLY depressing; I thought it was going to be fun and funny and instead I end up with an excerise like, “Write down 10 reasons no one will ever want to be your friend.” Wow, that sucked!
Okay, have a nice weekend and go and do your shopping or partying or whatever it is norms do on weekends. I am going to try and cheer myself by watching some more horror films. I am really growing to love horror films - those zombie films are great, it is like watching how fashions and trends spread. Why did women start wearing $500 of Lulu Lemon yoga gear to sweat? Were they bit in the face and became fashion zombied? Makes me wonder?
Thursday, November 29, 2007
First thing I want to point out is that EVERYONE is playing on “Team Terminal.” The difference between you and me is that you don’t have to think about it, it is far away and by that time they will have created robot bodies for your head to be attached to. I on the other hand took the spooky turn and am on the winding road that is full of fog and has signs like “Terminal City Ahead: End of the Road.” So while YOU could be run over by a bus tomorrow, it doesn’t worry you at night because there isn’t this little voice in the background saying “You’re going to die!” (unless you are a goth, of course). But that is actually just the first month or so. Then the whole, “I’m going to die” moves down the scale to simply fit in with all the other things that define you and it rests between, “I am left handed” and “Why am I so addicted to anime and manga?” The “maybe if I stay frozen like a deer maybe death won’t see me and run me over” moment is gone and life is still there. You find that you are able to get depressed over entirely OTHER issues, like “Why are there SO many crap reality shows?” and “Why does it rain all the time?” and “It’s barely winter and I’m already sick of soup.”
Indeed, the whole, “yeah, I’m terminal” would love to slip into the subconscious or be happily denied if I could only get, say, two days of feeling normal. I have a whole bag full of denial I haven’t been able to open yet. But once a week or so there is an “event”: a feeling really shitty, a so much in pain, a feeling of my heart being squeezed out for juice (for an hour!), some crappy night or terrifying incident. And that is when that fog on the road to Terminal City blows away for a moment and you see the twinkle of lights ahead. And you think, “Is this it.” Because all I need is to not be able to breathe for four minutes and that’s it. And sometimes, when I am having one attack after another and it has been going on for an hour or more and I can’t move, I can’t speak, I can hardly breath and the pain is mind-blowing, I try to stop breathing. Honestly, more than once, let’s say MANY times I have sought out the darkness of oblivion, not knowing if it was to be unconsciousness or death; I wanted, no, I LUSTED for the darkness, to simply be out of the overbearing HERE. But Linda or home care or a health professional always brought me back. It is hard to seek out the darkness, when you hear Linda saying, “I’m here sweetie, just breathe, just breathe.” Oh crap, I guess love wins again!
There is the personal side and the social side meaning, what goes on inside your head versus how other people handle things. It seems that the more integrated my diagnosis and I become, the more difficulty people have with my being terminal. When you go around in a wheelchair, have oxygen, pass out, go into spasms, and get laid on floors on a regular basis (twice so far today!) people want to know what is up. You can’t exactly be reenacting Beaches or some 90’s AIDS film where plug on heroic and act normal until you throw a party to tell all your friends. I mean you just drooled all over the floor of the coffee shop, you kinda have to tell the staff something! And besides, I don’t like lying, I find the best way to be an open, honest, friendly person with a sick sense of humor is to be just that. So yeah, sorry about spazzing on your floor, I’ve got an autonomic dysfunction, it makes my heart, and lungs, and BP, and other stuff go crazy at random times.
The questions you get are so standard I sort of want to make a card: (they want to know what it is and when you will get better. You can AVOID the subject of ‘getting better’ for five or six questions as they hammer away at you, but why?) So yes, it is terminal. No, I’m not getting medicine to cure it because there isn’t any. No, I haven’t given up hope. No, I actually spend my time trying NOT to think positively, as I find it depresses me (that sometimes confuses them enough to go away). Yes, I’ve tried acupressure; because of my condition it tears my muscles. No, let me explain again, there IS NO CURE; not in the States, not in Europe, no cure. Yes, I’m sure they will find a cure soon except all the research studies currently being done are to find out how quickly people like me die. I DO live life to the fullest, what do you think I was doing drooling on your floor? No, honestly, there is no medicine, there is no cure. No, radiation doesn’t help. Yes, I take vitamin C. Yes, I know I don’t look sick, and hopefully I won’t; right up until my heart explodes. No, even if I do exercises, I can’t get out of the wheelchair. Yes, I’m sure they are very good exercises.
The thing is that until people SEE you doing the funky chicken, they have a really hard time mentally accepting me as sick. They can understand I might have some nerve damage or something but if I were terminal then I would look all wasting and have lesions on my face (these ideas from the people who have seen too many AIDS specials). AFTER they see me do the funky chicken, the first words out of their mouth each time they see me is either: “You are looking good/looking better today.” Or “Have you heard anything else from your doctors?” I mean, they’ve seen me doing the funky chicken, they KNOW now that I have something weird and WRONG, but geez, they put a man on the moon and now we have tennis shoes that can be MP3 players, surely “they” must be able to fix what I have. This puts me in the horrid position of either being a wet blanket and saying “No, actually, I’m losing limb function” or “Nope, still dying, thanks!” or the emotional burden of ‘cheering them up’ falls on me, so I hedge with “Pretty good day.” Or “Some good days, some bad days.” Or “Well, I’ve got a few more tests coming up, let’s wait and see what they say.” But I feel that with the limited energy I have, I don’t want to spend it cheering up people who are depressed because they don’t want to believe I am terminal. WAKE UP! We’re ALL terminal, mine just has a name, okay!
What do I want? I want people I can tell the truth to, I want people I can tell what really happened last night or yesterday and try to make a joke out of it and they won’t get sad looking and quiet. Yeah, bad and painful stuff happens to me; bad and painful stuff happens all over the world. But here I am buying my coffee; and I’ll probably be here once a week buying my coffee for months or years; so lighten up.
As for me, no, it doesn’t sink in all at once. I would like to have ONE long remission, at least three days or a week where I DON’T get slightly worse (I asked Linda, she can’t remember a week of not getting worse). How about a month? That would cheer me up immensely. But other than that, I have these odd bits. I am not going to download episodes of the TV show Bones because it is cheaper to wait until next summer when the DVD box set comes out. “What if you aren’t healthy enough to watch it next summer?” a little voice asks. Ignore the voice. I look at my thousands of books, several hundred so rare I bought them so I could write research papers on them and have an academic career. I haven’t even read them. I’ll get around to it when I’m not blogging. No, I’m not selling them, I’ve got my whole life to read those thousand books..........oh.........oh shit. Well, I don’t care, I’m not selling them anyway! They’re mine!
I was having some pain and problems sleeping and Linda was holding my hand. I told her, “I know it seems odd the way I almost defend MSA, how I shut people down who suggest it might be something else.”
She murmured assent.
“The truth is,” I said and my voice started to quiver as it does when you are in the dark, at night and in pain, “that I don’t want to die so much, but I can’t live like this for 20 years. I can’t, I just can’t.” She gave my hand a squeeze. I continued, “The pack of pain pills the doctor gave me, six months ago it would have lasted two months; it’s lasted less than two weeks. What is it going to look like next year?”
“Go to sleep” she told me. “Think about other things.”
But I can’t. Sometimes, particularly after a bad attack or a long one, or a series of painful days where I sit helpless waiting to be carried, I ask every home care worker. “You’ve treated people for 10 years, tell me, what will things be like in six months?” They all say the same. They’ve never seen anyone with as many symptoms simultaneously as me. Sigh. I feel like Emma Thompson in the film Stranger Than Fiction – I want to go visit hospitals, peering in peoples faces, looking for some, I dunno, some spark of recognition, someone who can tell me what happens next. I also see myself, like Emma Thompson getting thrown out of the hospital for the same statement, “No, no, no, these people are sick, they aren’t dying, where are the dying people, I need to see the dying people.”
I went to a group that has access to funding from the Federal Opportunity Fund; for people with disabilities to get back into the workplace. They give you a “coach”, they give you adaptive equipment like voice typing computers, and they will send you to school for up to two years. They only get the big pay-off from the government when you get a job. Therefore I trust them – they don’t have time for endless meetings. Neither do I. The orientation meeting jammed 12 people in a small meeting room. I lasted 22 minutes before passing out (it was HOT, do the freaking math, this is a group for PWD and you don’t think of heat intolerance?).
I got a one to one with a “private coach” and signed up. She saw maybe the agency plugging my writing to different places where I could work from home. I said that was attractive but that also, I wanted to go to school. I wanted to be around people. That yes, I have education, I have six degrees but what I don’t have is time, and interaction. I want to do something that makes me excited around people that are also excited. And anything beyond that is gravy. What I don’t accept, and what the people who knew and know me don’t accept is that the life I spent years and decades creating; the academic oriented life is gone. I still can’t think about NEVER standing on a fencing strip again without misting up. Okay, that idea of what my future was going to be is gone, but I’m not gone. Send me to art school. Send me to teach high school kids creative writing. Send me somewhere to do something that I can care about and with people I can care about and who care about me. I want to stop at every roadside attraction on the way to Terminal City.
But for the 12 hours I am awake each day; it is mostly mundane. Get up, read and comment on the blog comments, get dressed, try to explain the concept of “String cheese” to a non-english speaking home care worker, drink Gatorade, take a nap, try to get up from the nap, bang on wall for help. Then do something with Linda that isn’t about work, money, my family, her family, a fight or other crap. Tell her my crazy plan of the day; see what she thinks. Watch something together if it is a good day. Plan to go out on the weekend. Be put in THE CHAIR in front of the computer. Linda wraps my feet with a blanket. She remembers I am supposed to take out my contacts while I still have finger function. Edit the blog for today (or start writing it). Watch some US TV – decide that I still have WAY too many brain cells left for The Ghost Whisperer to be an interesting show (EVERY EPISODE IS THE SAME!). Write an email. Take more pills. Go to bed. Wonder if I will ever get to meet any of the people who read my blog. Wonder if I have a medical appointment tomorrow. The day is done.
Wednesday, November 28, 2007
Politically I think I am expected to say I am a person with profound disabilities, a PWD or rather that I am a person with impairments where society turns those into disabilities. But that last part is a lie. It is the fact that I am visually different; my use of the wheelchair, the intermittent tremors in my hand, my slurred or distorted speech which allow me to kill with impunity. If anything, my ‘impairment’ has enabled me to pursue my life’s work.
Before I continue, I should clarify that I have murdered between 114 and 116 people; I never was able to verify those two people on bicycles I clipped with my car. God, I love adaptive technology. When I was first ensconced into my wheelchair, I could only dream about the opportunities a driver’s license might provide. And considering the limitations of my impairment, if I ever get caught doing what I call the “fender accelerator” to a cyclist, I already have a defense. The weaves and wobbling of the cyclist in front of me was clearly ablest taunting of my disability and my need for clear precise arm movement in order to drive. Not only was I literally unable to prevent the accident, but it was one which would have never occurred had the cyclists simply respected my human equality but limitations as an adaptive driver. At least that’s what I would tell my ACLU defense team. I see this as an ADA case they would salivate to defend.
It is true that I am in severe pain, and that I have twice been offered a morphine spinal implant and twice refused. My neurological condition makes my nerve endings intermittently send pain signals of a non-existent trauma. This is painful to the point of near debilitation. In my neighborhood and local community I am viewed as a prime example of a stiff upper lip, or as an example of stubborn pride taken to extreme. Some see me as a hero, disabled but staunchly continuing on. And some have begged, moist eyed, for me to get the implant and free myself of the pain. This is all intensely enjoyable, to be regularly and freely given almost unlimited legal narcotics and opiates far exceeding typical human lethal levels and have this considered a positive and endearing personality trait.
My first kill was with a breakfast smoothie. It worked so well I’ve killed 27 people now by what I refer to as “the smoothie method.” I take a great deal of medication: things to block signals from the brain, things to aid signals from the brain as well as a hefty wack of opiate painkillers. Long ago I informed my home care rather than playing the “pill fumble” game for half the morning I simply wanted them mixed into a morning fruit smoothie. Everyone got very used to me making myself smoothies. Everyone got used to me drinking smoothies. I like the ones that taste of peach with a mix of bananas. It smells divine and more than once people have asked for a sip. I have to refuse and I always remember to smile as I say, “Sorry, it’s medicinal.” And they laugh, not sure whether I am joking with them or not. The amount of pain medication in my smoothies, as my tolerance has increased, would almost be enough to send your average human into liver failure; a three day prolonged and painful death. When I am out, my wheelchair stationary next to a park bench and a child begs me “drink please” the temptation to give in and hand it over, watching them gulp it down is almost unbearable. I am sure I could leave the scene before the seizures started, but still, patience and planning is what got me this far. And sometimes pleasures are best delayed rather than immediately indulged.
My first kill was at a Respite; one of those hotels for disabled where we ‘dependants’ are shuffled in and out, mixed among the seniors on respite with all the bustle of a transit hub. On the first morning, I noticed those with dementia, the chronic loquacious cases and those reenacting arguments of two decades ago. I also watched one elderly gentleman who had risen from his seat and was now seated at another table, one which displayed the name card “Ethel.” He had removed the covering and was now cleaning off the plate of pancakes with a steady gusto. I wheeled myself into the common kitchen area where the respite worker, Larbie, was making himself toast. Between making himself food, smoking in the veranda and making cell phone calls in the linen closet, Larbie had care avoidance down to an art. “What is happening to Ethel’s pancakes?” I asked.
Larbie looked around the corner. “That’s George, he’ll eat anything put in front of him.....or anyone else.”
Larbie shrugged, “She should have been here for the start of breakfast.”
Fascinating. That night I noticed George slurping down his dessert strawberries (and the portions of three other residents).
I spent the rest of my days at the Respite accustoming Larbie to the sound of me making my smoothies. After a day of blender noises he stopped coming to investigate. After three days, he didn’t even look up. I was certain the blender sounds had become so much white noise that he would not even be able to remember hearing it.
On my last day, I must have been confused, since I tripled the amount of pain pills I put in my smoothie. Odd how things like occasionally happen. I made a strawberry banana smoothie for my final morning; an extra helping of strawberries, enough to create that tantalizing scent of summer. I had barely put my smoothie down on my table when I realized that I had not completed my full preperations for the morning departure and wheeled back to my room. I do dislike leaving loose ends.
Fifteen minutes later I returned to find my smoothie glass empty. Oh dear.
I washed the glass, placed it in the drain board, emptied my room and waited in the lobby for my taxi. I am very patient.
Later I read a newspaper story, on page 28, about a tragic accident in the same respite hotel that I recently resided. It seems a patient must have wandered into someone’s room while confused and swallowed a large amount of pills.
I certainly hope they didn’t hold Larbie to blame.
This is the start of a series of stories I have begun regarding ruthless, sociopathic and all around nasty people with disabilities. It was inspired by THIS POST by Dave Hindsburger. So thank you Dave for helping me to understand exactly how MUCH criminal activity we could get away with under the cloak of disability stereotype (both from the AB world AND our own community). Plus, it has been far too long since I killed someone; I just needed to get it out of my system.
Tuesday, November 27, 2007
That’s what my home care worker said once she learned the two parts of my boxing class. The problem is that while I still have muscles; I can’t access them; the connection doesn't work. So for the first 30 minutes of the class, I am so weak I struggle in every activity, and though I push myself the hardest, I just can’t reach the power in my muscles.
Then I start to sweat. I don’t know what chemical it is or if it is a chain reaction, maybe adrenaline, nor-adrenaline, nor-epinephrine, I don’t know but suddenly, my arms are twitching and so covered with spasms they blend together but I have full use of the muscles. I am strong again....for 40 more minutes, I will have the power of an athlete again.
My home care worker wanted to know why I didn’t spend even more time in that state. I told her that 1) I push myself to the point of exhaustion and 2) every minute I spend in that state costs me one hour of extreme pain.
“One MINUTE is one HOUR?”
“NOTHING is worth that!”
How do you explain what it is like, almost a year on, about being in a room where you are one of the top athletes again. Going someplace where the new women come to get tips from you. How do you describe the feeling when people line up to bout with you. Or when people joke with you; come up and start conversations with you. Outside of the gym I am not a person who is seen an asset, a person who would be cool to get to know.
But, last night in bed, at a 35 degree angle, my left rib cage wouldn’t expand. Then the inside muscles lining my ribs started to ripple and my entire body violently shook as if I was in extreme shock. My teeth were chattering and my legs were trembling in signs of severe hypothermia, even though my body was overheating. “Are you cold? Are you cold?” My home care worker asked. No. No. But when it finally ended, I was paralyzed, except where my skin rippled from over a dozen subcutaneous spasms. But at least, after 30 minutes, I could breathe without feeling like I was drowning. The home care worker talked to me about upping my pain medication dosage significantly. She said that one point of pain medication is to be able to sleep. I finally slept with pain killers, massive muscle relaxants and two sleep aids only to have the pain wake me three hours later, and three hours after that, and three hours after that.
I know in the constant pain and erratic swoops of consciousness today that I cannot continue boxing, at least in the present form. I know this may seem simple and obvious to you, but I’ve been grieving. Truth be, is I’ve been moody and blinking back tears. It’s not just the boxing. It is the boxing. I thought I could handle the pain but that…..bizarre seizure last night terrified both me and my home care worker; and she’s worked home, hospital and palliative care for 16 years. I know she is right and that we can’t risk something like that again.
But damn it, I was Elizabeth, back with a plan, fighting the fighting in literal and metaphor ways. And, my God, those glorious 35-40 minutes when I was high on adrenaline and full of power… I spend my week getting carried, pushed in my wheelchair and/or assisted everywhere. Do you get it? I had Full Muscle Power again. I would pay more if I could just go for a jog again, to have my wind in my hair as I stretch out my legs taking in the downhill with swooping strides. I'd pay it. I didn't have that, but what I had was close enough.
But it isn’t worth a stroke, or permanent paralysis. It isn’t worth agony which is stronger than the opiates I take. It isn't worth 36-40 hours of that to experience 35 minutes (Well……maybe? I mean "No!").
My impression was that not many readers were particularly in thrall at the idea of me boxing. But I was. So tonight I grieve for that particular dream. Then tomorrow, or maybe the day after, I start building a New Plan, a new dream. It seems a cowards way to stop just because of the pain, and the passing out and the being unable to move. But I guess it might be more important to be able to breathe, to sleep, to not have scary freaky seizures that go on and on than to prove some abstract point to myself about quitting (let me tell you from the memories of last night, being able to breathe is REALLY, REALLY important).
Damn. It was a really good dream too. It was MY dream.
Monday, November 26, 2007
Okay, I bought a new shirt, I think it was from Switchblade Stiletto, but it is the classic Madonna (1 point for the virgin), but redone with skulls (1 point for goth). I decided to go down to the village today. Linda’s sister is holding my black angel wings hostage for reasons I really don’t understand. So I had to wear my black wing earrings instead (not QUITE as impressive). Also my crucifix with tortured torso of flailed ribs and skull nailed to it. And skull headband so I get points for all that; does my skull thong count too or does it need to be seen?
I went to the village to return and get DVDs. I am watching a lot of horror films because, well, they aren’t very horrific to me. I’m mostly yelling at the screen, “Lucky! You think that’s horror, come on, I DREAM about dying like that!” Actually recently I dream mostly about high school and I keep walking into class rooms and the teacher says, “So you are here for the midterm…” And I say, “And this class is?” And it is usually a class I never took like molecular biology or particle physics. I run to my locker. I have 15 minutes to learn the entire course (actually this isn’t as hard as it sounds), only I haven’t got a clue what my combo is. And I have no idea where the office is to get “the lecture” about being more responsible in order to find out what my combo is. That’s been the theme this week in dreams. Which is odd because, for instance I watched SAW last night. When I brought it back they asked how I liked it, “Boring!” I said, “What is it with Americans that they lose their entire moral compass in just SIX hours? You lock up any American for SIX hours and they will do anything?” Plus I can’t quite get into the odd morality of it; how we are supposed to accept that a weird sociopath has the right to judge these people’s lives. I mean, an affair? In France, the President says, “Thanks for electing me, this is my wife and over there…that’s my mistress.” And a doctor who is incompetent, seriously? Have you been in the NHS? Where we lived, there was a old, old doctor who it was proved killed lots and lots of patients because he was incompetent and learned doctoring during WWII BUT since he was the only cardiologist in about 200 miles they decided to keep him on….at least till they could find a replacement.
Oh, I am way off track here. Besides horror films I have been reading Iono-Sama Fanantics. This is a GREAT book, which seems to have been printed by a series of accidents. Basically a manga artist was told to make something that is cute and sexy but really odd because they wanted to print something different than everyone else. He came up with the idea of a queen of a western country who is a total lesbian and comes to Japan searching for a lover. They liked the idea and told him that unlike regular manga, they weren’t going to get reader feedback, he could put whatever he wanted in it. And thus we have Iono, the lesbian western queen (where is this country, I have to go there), who needs more black haired women to add to her harem. She travels with an all female company of staff and after walking the streets with a translation book asking random females “Will you be my escort/lover?” She is not exactly subtle, and bumps into Eto, a long black haired girl with glasses who Iono greets with, “You look absolutely delicious!” Anyway, Eto says that she “doesn’t swing that way” but somehow keeps hanging around. Then in the hot springs they take together (this is manga land remember, these things always somehow happen) it turns out that Eto loved a girl in high school. Only the closer Eto got to the girl she loved, the more that girl fell for a different girl. Thus Eto is convinced that no one who really knows all of her will love her (AWWWWW!). Insert scene of Iono grabbing her breasts to convince her otherwise. Of course Eto is finally convinced and joins Iono as her lover. Only soon she realizes that everyone has a job but her. Iono suggests that she tells “Fairy tales at bedtime”’; or that is what Eto hears, since in Japanese the terms for acting out dirty stories and dirty sex talk and telling Fairytales are pretty much the same. You kind of have to feel bad for Eto trying so hard reading Fairy Tales when you know what Iono is going to be expecting that night. There is a meandering plot as several other members get female lovers (this is sort of Xena world gone wild), and Iono constantly has to be dragged away from her amorous encounters with Eto (who is played as the innocent in this....yeah, right, not for long).
There you go, I made it to the end of the post. Didn’t make a great deal of sense but I didn’t mention pain, disease or other horrid stuff, if you discount the sad state of affairs of the US horror film industry. I cheered myself yesterday by watching Rupert Everett in Cemetery Man (Italian Horror), which includes a rather interesting sexual scene where Rupert, the man who keeps the cemetery during the day and kills the zombies that arise at night, see the woman of his dreams. She rejects him insisting her freshly dead husband (several decades older than her) was such an incredible lover, she can never replace him. Rupert, after several thwarted attempts to engage her in conversation finally blurts out; “The cemetery’s small, but it has a marvelous ossuary!” Truth be told it was a pretty magnificent ossuary (I keep a small one on my desk), but it gets the widow sexually charged in a.....well....mildly disturbing way (at least for me, Rupert seemed to like it fine!). She is in rapture over the ossuary but she insists that when they kiss, that it must be through both her mourning veil and with his head covered in a silk cloth used for covering the corpses. Well since both parties seem to have an erotic necrophilia environment fetish going on, why not? They consummate the sexual act on the grave of her husband because “We always shared everything.” Seriously I can’t condemn a girl who gets excited over an ossuary, I mean who doesn’t. But the comments about sharing sex with your husband after death….time to take a cold shower or reread Iono-Sama Fanatics. Trust me, if all that attracts her about you is a dead body, that’s a relationship which isn’t going to go well in the long term.
So, oops, one XY identified introduced but it is Rupert Everett so…well, that’s allowed. And yes, this post meandered more than lost sheep. Think…think…we need a good finale. I know; I’ll show my skull thong…okay, all ready...oops; Linda just walked in. “What am I doing with this camera and my jeans around my ankles? Trust me, it looks worse that it is…. No, no, I am not revisiting the idea of doing online porn.”
Errr…sorry, I’ve got to go!
Sunday, November 25, 2007
Apparently the one thing I kept moaning/screaming was, “What did I do?” or as I lost functional speech, “Why?” Now this wasn’t the abstract philosophical “Why?” as in “Why do children suffer?” but a very specific extension of the thought that I had done EVERYTHING right. I had eaten what I was supposed to eat, I had drunk the right amount of water, I had exercised, I ate fiber, I had done everything that we are told that should not grant us but GUARENTEE us to feel good. So what did I do, did I not love God enough, did I not eat prunes when I should? I just couldn’t accept, seeing three decades of TV, newspapers and articles that inform, you get cavities because you eat candy; that you feel sluggish because you don’t exercise enough and you are depressed because you don’t have enough serotonin so take this pill. See, if you feel X it is because Y and the solution to all of it is to do Q and R and every other week take some V. There is this law taught to us, written into us, into our culture, our religion, even our view of the worth of each other. So if person A is homeless then there is a chain of events which led to it: decisions which could have been rethought, actions averted because we can’t accept that you wake up homeless (unless you just told your parents you are gay – but still, you said G so now you are H).
I was in a level of pain that, though I had taken the maximum number of pain pills, I just wanted to scream and keep screaming. Only I was more terrified that such concentrated stretching of muscles might tear and make the pain even more intense. And I couldn’t accept that I couldn’t find SOME reason, some THING I had done, or not done to trigger this, to cause it. That I didn’t come to bed soon enough, or I didn’t take enough oxygen earlier in the day. “What did I do?” and “Why?” I don’t know how many times I actually spoke them but I asked that a lot last night. Lot of pain. At one point I remember thinking, “They say third degree burn victims have the worst pain; Let’s set my arm on fire and see if that’s right.”
See, I am finally starting to get what having an autonomic dysfunction means. It means that things just happen. Indeed, no one really knows for sure WHAT happens or why. Maybe last night I had many hours of erratic heart beats, maybe I didn’t have proper lung/oxygen conversion and all my muscles thought THEY were dying from oxygen starvation and really wanted to let me know (like I could do anything!). I don’t know and the realization that there was absolutely nothing I did, nothing I could have done and that is what this disease, this “disorder” does is starting to come home to roost. The idea that there are times I can do NOTHING and I will continue to suffer because that moment an autonomic function decided to break down all the muscles on the left side of my body is pretty damn terrifying. I mean I know what a cancer cell is; as bad as it is, it is a survivor, a fucked up cell that lives when it should die and replicates and replicates. I can understand that. I understand Lymes, and MS and Parkinson’s. But this, I don’t get it. My autonomic system changed from Albert Einstein to 99 monkeys banging on typewriters. No, no, no….that’s just not right. What am I supposed to do? Do I send jolts of electricity through me and hope for a short out? Or just writhe and moan and scream “Why?”
I wrote to a friend that I sometimes/often wish that I could put my hand on someone and have them feel what I feel. They said that is normal, that I want people to understand exactly how I feel. I’m afraid they think too well of me. I want to put my hand on someone, someone who is dismissing me and have them feel exactly what I feel because I want to see if their heart stops from the pain. I want to see the terror in their eyes as all the different pains I feel constantly starts to wash over them. I want them to know how turning over in bed can have all the focus, concentration, extreme effort and pain of a speed ascent of a rock climb. Taste that you fucker!
I guess I am hitting one of the stages of grief/acceptance, whatever. Or I am cranky. I don’t trust able bodied people anymore. I hate the memories of myself. At least I pushed myself to the limit, or at least what I thought was the limit; I can accept that. I can’t accept how I walked around blind to what other people, people with disabilities were going through everyday. I had friends with disabilities, I still do, but I never knew. I mean, I kind of thought about it while going for a jog maybe, but I never KNEW. And I guess now that I do, I’m a little angry; at myself and at all those others who cannot see, who cannot hear, who do not know. So I want to “share” with them. Condescend to me? Look down on me? Then come, take my hand; BURN WITH ME.
Do you want to see the Dance Macabre? My address is…… Did you know that term came from the Black Plague, that the pustules were so unbearably painful that as agonizing as it was to move, it was impossible to lie still unless tied down. So in the final stage, they twitched, and moaned (often the tongue was too swollen for much more) and “danced” in the streets till they died. Okay, I am starting to get it. I do everything perfect, eat my required servings of vegetables and fruits and drink my 8 glasses of water a day and anything can happen anyway. I am Chaos Theory as it applies to our understanding of body function. I won’t let that define me. I can’t incorporate it into me and I can’t ignore it. I won’t be silent about it though; I won’t hide it. I had to confront my parents today; they wouldn’t use the term autonomic dysfunction or Shy-Dragers. “That’s what it is, EVERYONE agrees now.” They said they were holding out, hoping for something else. “Well,” I said, “Many think I have several OTHER chronic or autoimmune diseases?” No, that wasn’t what they wanted to hear. They were hoping for the best. The best right now is finding some sort of medications to slow things down or contain them or make the pain less. Do they think I don’t have those times when I say, “Okay, it is time to wake up now!” Dad, this isn’t like dressing goth or moving to the UK. This isn’t me being rebellious or difficult: I didn’t choose it; I didn’t court it; it came to me.
It was sometime after 2:00 am and I was gasping to try and breathe. “I...love...you.” Linda was holding my hand. “I....love...you..”
“You aren’t dying on me tonight.” She said, “You aren’t dying tonight.”
“Fuck,” I thought. I could only see out of one eye, I didn’t know if my arms were in rigor or my hands were claws, another wave hit and a piece of stucco on the wall was all I could see, “I...love....you..” I said.
“God, please, let me die.” I thought, “Please.”
Linda said when she saw me this morning she didn’t think I would be able to do anything today. “Air Hockey!” I whispered in her ear. She helped me dress. It took an hour. She pushed me there. If my health improved dramatically I could say “I felt crap.” After the first point I passed some time with my head on the Air Hockey table. I think Linda put me on oxygen. She thought we should go. No. It was Air Hockey day. The oxygen helped. She got ahead. I started getting angle shots and I tied up at 5-5. The table shut off just as my last shot clinked home. Linda denies I won: “The time was up!”
Night approaches now and it is going to be another rough one. But I played Air Hockey today. Will it be enough to hold onto? I don’t think so....but it’s something.
Saturday, November 24, 2007
It is a hard job but someone has to find those moment of sunshine and feed the squirrels. And yes I anthropomorphize (attribute human qualities to non-human things) them from nose tip to tail. For example, in this picture, I am feeding Twitchy while an envious sea gull looks on. I might feed the gull except, a) they shit on me, b) they shit on my car and c) they shit on my windows. Three things which the squirrels have never done (these are three habits that tick me off; take note readers who might want a free meal at my place in the future). I call this squirrel Twitchy because he has a very short and pathetic tail which he thinks is magnificent but mainly because this squirrel has ADD. I mean, Twitchy is incapable of running a straight line, much less going two feet without being distracted. I would bring him squirrel Ritalin if they created it.
A reader suggested I was channeling Snow White to get the animals to flock around me. Not really that complicated; first make sure your feet, hands and groin smell like food (good advice when feeding squirrels, bad advice when feedings bears!). Then simply “become the squirrel!” As you can see in this picture, the squirrel and I have the same hunched over posture. I have become a version of Squirrel Santa, a giant wheeled squirrel bringing peanut gifts for all. You may also notice my NEW wonderful skull scarf I bought on Thursday. In the UK, the scarf you wear indicates the sports team you support. I am supporter of “Team Terminal.” Members of the team don’t always head for the goalposts right away, and there is often a lot of weaving about, but we all get there in the end.
At first we had a great deal of difficulty getting any black squirrels to approach. It seems that in November, like for the Grizzly Bears, the older and faster squirrels had already gone to nap (or off to a party somewhere?). So more grey squirrels and a few skittish black ones. This was one of the most confident of the grey’s who had no problem using my feet as a begging platform. I am sure he will be back with a tiny guitar and a sign soon.
Probably, like me, you want to know, “Where is Psycho?” I mean, there are black squirrels and then there are black squirrels who launch themselves right onto your lap (and try to steal from you). We went back to the grove and was approached by a cheeky black squirrel who a second later climbed up my black handrims, grabbed the peanut and did a back flip off the chair (seriously!). I like this picture though because while he seems interested somewhat in the peanut it could as likely be that Victoria is reduced to hiring squirrels as companion animals and he is pushing my chair.
So, what about Psycho? We went all up and down and every time a black squirrel ran toward me, I thought, “This is him.” But then they would get all wary and edgy and you could tell it just wasn’t Psycho. That is until Psycho’s little sister showed up. It was obvious from the way she approached that they were from the same family. However, Psycho arrives at parties with a belch and grabs two handfuls of the hors d’oeuvres you spent three hours making and stuffs them in his mouth. She, a little sister by the look of her, was obviously the one people go, “And she is related to him?” and is named after a flower like Daisy or Violet.
I mean, she walzed in with a charm and elan of the assumption there ALWAYS a standing invitation for HER. But this was enacted more like a friend or person of grace dropping in for a congenial tea in the sun than the smash-n-grab equivalent of a meal.
She climbed up, positioned herself, took what was offered and ate in those tiny sized nibbles that were beaten into us as manners of a well bred girl…or squirrel in this case.
I like to think of her as Violet or Fiona, and quite honestly it was more than a little disappointment when she turned and headed off, “Other engagements,” she said with that smile, “you know how it is.” Ahhhhh...so soon? A human and squirrel lesbian relationship is wrong right? Does that count even if we’re just dating? Still, I want her to be my best (squirrel) girlfriend. We can have a slumber party!
She never came back (I am starting to see this as a story set in WWII and she is stationed up north and we promise to write each other every day.....).
But we continued on, thought it was getting cold, very cold by this time. We feed a few more squirrels including this black one who decided instead of just jumping up and taking the peanut to turn it into an aerobics class, with the “Stretch and all the way out now....hold it, hold it, do you feel the burn?” Whatever. I’m just the dispenser of peanuts, they want to be neurotic, that’s their choice. Oh gosh, now I sound like a bad counselor. Um, what is it I say next: “I can’t make you become a saner squirrel, it has to be someone you want for yourself.”
I came, I gave peanuts, I met and had tea on the green with Psycho’s sister, I got a crush, she left me, I sulked, I gave a few more peanuts and I went home. Sort of classic day in the life of Elizabeth actually. Especially when you throw in my new “Team Terminal” scarf (The only team that LIKES going into overtime!). So I don't care what cool thing you were doing this weekend, because I want you to envy me. I communed with nature (and broke several biblical laws of inter-species attraction!)
Friday, November 23, 2007
Which gets me to my question, what use am I as a human being? Why should anyone come to help me eat, or help me to the bathroom, or help me to bed when I can’t move? Why should I be taken care of? What purpose do I serve in our national and social framework? The plain fact is that I am not well loved by many people: my family whether immediate or extended isn’t interested in assuming the burden. The reality is that care isn’t coming from family. So it falls to society. And I, as a rational member of society (albeit only barely rational in this level of pain) don’t see the gain. I am not an “angel” spreading goodness by the love that shines out of me despite my disability. Nor am I an icon to be held up as a person who deserves what they got for leading the life they lead: a sort of living public service announcement. If I was taken to schools my message would be; drink more, have sex, act a bit wild because if you exercise daily, eat a healthy diet, never do drugs and invest in education and your future you could end up in a wheelchair like me.
There is, I realize a gigantic industry of people who make their living off my existence. I have a case worker, I have a occupational therapist, a recreational therapist, a physiotherapist, a GP, several specialists, middle managers at VIHA to allocate money to the listed workers as well as home care workers, home care schedulers, middle management for home care workers, respite managers and workers. Then there are the medical supply stores that sell you a bath bench for $250 which looks very much like a plastic lawn chair sold at Target or London Drugs for $25 (but if you don’t get it from the medical supply store then your insurance won't pay); there is the company which sells me oxygen, there are the people at the insurance offices, the disability assessment officers and the disability investigators. Those are but a few of the primary people who make between $40,000-$65,000 annually administering to a small collection of people like me. There are also secondary people who make money off of me, like the Inland Revenue/Revenue Canada people who spend time to send letters requesting more information or auditing your medical deductions, the administrators at all of the doctor’s offices, EMT’s, and all the technicians for the test that are ordered, bloodwork that is drawn by one person and processed by others. Then there are the drug makers, the sales reps and the pharmacists for the medications I am on. These people all make some sort of living which requires that people like me exist. They are all hired, judged on their skills, employed and paid to take care of people like me, without any input or involvement of people like me in the process. Nor, do we receive any share of the financial remuneration they receive, even if, for example during medical test, we do more labor than they do.
Being disabled is costly. This week I made $40 for coming up with a better word arrangement for a yellow pages ad by people who knew me before I was disabled. My average costs this year to keep me mobile, and as healthy as we currently know how along with emergency aid is averaging $250-$300 a week. So yes, you could get a very nice two or three bedroom condo and pay that mortgage, or you could be married to me; which Linda is, because that is legal in Canada. It is too bad that in Canada, as long as your partner makes enough money for both of you to be very, very poor, then they are required to pay for your costs. And yes, that is what we pay for AFTER insurance; without insurance, I cannot imagine how wretched my life would be like (no boxing for a start!).
I have been contemplating the amount of legislation that has gone through or is present in order to protect the people who take care of me (like they don’t have to lift me, that is a 911 call, which, whether they take me to the hospital or not has doubled last month to $85 per callout, whether I make the call or not). Legislation to make sure I am disabled; legislation on who can and cannot be considered disabled, legislation on how much disability money I must give back if I make money, and legislation and audits confirming I am disabled. I have not yet found any legislation to encourage or assist employers in actually hiring someone with a disability. As my home worker says; “I know Safeway hired people with Down’s to bag groceries.” Well, that is true, “Have you seen any workers there in wheelchairs?” Uh…no. Any in Starbucks? No. Any wheelchairs in ANY major public retailer with the exception of a medical supply store? Well, I haven’t yet nor had she. “But,” she pointed out, “They might be in the back answering the phones.” Well….yes.
Last year, I applied for government research jobs, writing government position papers and university teaching positions. This year I have had three job offers: one was to fold a pamphlet and put it in an envelope (a job I ironically did for 4 hours at age 16 before quitting, how we have turned full circle), a job answering phones and a job putting away DVD’s which after two days I was told that the able bodied staff could do it faster.
So today I called the company, Triumph, that the British Columbia Government has given 500 million dollars to get people off disability and into jobs. They have “courses” and career counselors. What I wanted to know was, “Do you have access to part time government jobs.” Errrrr….no. Because of the 140 government jobs offered weekly, about 139 of them are full time and a majority of them require the ability to work overtime, to travel or to drive (or all three, as for instance Linda’s job does). So I asked the person at the other end, "What I want to know is, could you get Stephen Hawkins a job?” She seemed confused.
“Well,” I said, “He needs an attendant, he can’t work every day and he probably can’t work full time, plus he has a VERY limited resume. He might be brilliant, but could you get HIM a job?”
“Uhhhhh….” There was a pause, “After the orientation there will be a time for questions.”
“I just mention this because I notice that all of the “success stories” on your web page involve people with depression and back pain and going into entry level positions.”
“You know, those are things you could ask in the question time.”
I plowed on, “Indeed, the one person who was closest to me was the woman who had a stroke and had a B.A. in Business Education and was a loan officer, the equivalent of a level 14 or level 18 administrator, and you got her into a “home business” of doing data entry, which is a level 5 or level 7 administration task.”
“Um….” Another pause, “That’s something you could bring up with your career team.”
“I just mention it because that’s one of six employment you list as a “success story””
“I have another call coming in!”
From what I can gather (I have an orientation meeting with them on Tuesday), that once I sign up, they get authorization from my doctor that I am disabled and then get authorized funding from the ministry to “help me.” What I have to wonder about is if this is going to be like my recreation therapist who wanted to hold endless meetings of which SHE got paid for each of them and in the end she arranged NO recreation for me (I did it all on my own). I mean, this should be Pay-or-Play, right. Because if they are paid whether they find me a job or not, I have to think they are not going to be very motivated to find a suitable job for someone like me who is severely disabled. While if they got paid ONLY when I found a suitable job, they might really go the extra mile.
I was even less impressed (read: enraged to the point of screaming at the computer) when I found out that they expect the “disabled” placements to perform as well OR BETTER than the able bodied employees and indeed asked the workplace to rate them on ATTENDENCE (“86% of persons with disabilities rated average or better on attendance”). My first thought is, “What kind of crap job is it where attendance is the most notable skill?” and my second thought was, “I am DISABLED you FUCKERS; this means I am not going to be able to compete on a level playing field with able bodied individuals.” Because if I am conscious and can concentrate for five hours a day and I am compared with someone who can concentrate for eight hours plus overtime; I will not be rated “as well or better” than ‘non-disabled colleagues.’ When I go boxing, I don’t box the same amount of time as the other people in the class; I need to take oxygen and cooling off breaks. Plus the next line was that “90% of employers had no increase in insurance costs” by hiring someone with a disability. Oh great! You mean the place PAID to help people with disabilities is trying to convince employers that I won’t have a higher insurance cost? What is wrong with this paradigm? Well, that only “certain type” of disabilities are then desired; and I am guessing the girl with the passing out problems, the need for oxygen and the inability to move at times (along with leaving work in an ambulance a few times a month) might NOT be the most desired “disability.”
Or as my home care worker bluntly put it, “Yes, a cinema COULD hire you to rip tickets at the door, by why take the liability risk when they can hire a 19 year old with no experience but has no medical problems? Yes, it might be discrimination but how are you going to prove it and in the end, it is what they are going to do anyway.”
Right. So, right now, my entire contribution to society seems to be the testing of vibrators. Which is I suppose a noble sort of pursuit. Certainly there is a crying need with Christmas tension coming for someone to say, “People, you need to keep your stress levels down, I’m BEGGING you, please masturbate EVERY day!” But is that really enough of a reason for me to be kept alive? Or am I like the coal industry or the BC timber industry where so many people rely on me for their livelihood that even though there is no economic sense in my existence, I am supported regardless.
Okay, I’m done. I’m still in pain and this isn’t a happy blog but it is a question I want an answer to. I am not a 85 year old who has had children, lived her full life asking, “Why am I still here.” I am a person who has a wonky but still impressively big brain, but in her present situation cannot see a cost ratio reason on a personal or societal level for supporting my existence (It is pretty easy to get rid of me, just lower the hospital bed until it is flat and don’t give me any oxygen).
Gee...that was cheerful....er.....happy thanksgiving?
Thursday, November 22, 2007
In an unrelated anecdote I actually saw a woman sexually offering herself FREE to anyone today on my way to the Cool Aid Clinic. The Clinic is next to the needle exchange which also happens to be a block or two from the “historic” Chinatown (150 years ago it had a lot of opium dens, gambling halls and brothels and the back alleys to escape the law are still there). Well, she was tripping and someone had said something to set her off and unfortunately there were TWO bus-loads of tourists taking pictures of Chinatown. And this woman in her short denim skirt and her well traveled face bent over on the sidewalk I was waiting with my wheelchair to cross, lifted her skirt and said, “Come on, it’s right here, come get some of that!” (Though she was not actually talking to me I had a direct eye line view – errrr, just because you are a lesbian doesn’t mean you like ALL things shoved in your face from females). Then she wandered into the middle of the street (oblivious to traffic) and hitched again, “Here it is, come on, don’t you want a taste you fuckers!” As it was, I was late to my Doctor’s appointment and had to make two blocks in about 90 seconds so I didn’t have time for the rest of story, sorry. Still, I am sure a woman standing under the Chinatown “good luck” Dragon Gates, bent over, her hair trailing on the ground as she hitched up her denim skirt (Can we say “Commando!”) provided a VERY memorial experience for some tourists. I guess my fascination was the amount of times I have fantasized about doing that – it turns out to be a lot less attractive and sexy in real life.
Back to boxing. Now, after I did my happy face of boxing I had to do the second (or was it third?) round of a three minute bout of shadow boxing. When I go to boxing remember the purpose is to SWEAT (which I don’t normally do) and to do such extreme boxing that I tear down my muscles in order to be rebuilt; if there isn’t muscle trauma, it doesn’t count. So when I box, I sort of turn into “Demon” Elizabeth, in which I literally try to throw twice as many punches as anyone else in the club, and twice as hard (and tonight there were 13 guys and only 3 girls). Which is why I tend to….errr…pass out, after a particularly hard round (or during, whichever). So this is what I look like when I shadow box:
Yeah, not so smiley and nice anymore.
The secret to wheelchair boxing is a) you have to learn how to hit. If you are a female you have been taught from day one NOT to hit. The problem is that if you give half assed hits what you are really doing is hitting short. You know the phrase “If you had a long enough lever you could shift the world”? Well, if you accelerate a fist while turning your body and throw a 36 inch punch, it is going to have a LOT more power than say, a 12 inch hit. This why we practice on the heavy bag, because it doesn’t scream or go “ow!” or “Stop that!” and flail at you with open palms. Truth is, you are going to be hurting a lot more than the heavy bag at the end of the night. So, if you are like me, you use the swing of the heavy bag to practice your timing and then throw combo’s. Sometimes, Ian the coach will have us practice combo’s for a minute like, jab, counter, jab or jab, counter, hook or jab, hook, hook to the body. If you want a sport that will give you a complete workout, disabled or not, try “non-contact” boxing. Tonight we did one minute rotating stations of sit-ups, push-ups, heavy bag, lunges and break. Then again for four or five rounds. That’s the “warm up” for the advanced class. And if you are finding doing 25 to 30 sit ups in a minute boring you can throw a jab, counter at the top of each sit up.
I got to do a bout with the “second”, the guy who takes the class when Ian is away, lets call him J. He has custom yellow gloves and I like fighting him because he bobs and weaves and so I really need to get my timing down. Of course, I would like to say I felt a little sorry for J. as he fights wheelchair girl with the coach Ian yelling “Get him Liz! Get him!” I would say it except I was too busy going all out trying to nail that dodging boxer. Last time I had managed a few good body blows (uppercut to the heart is my specialty) but he had changed to defend himself. He kept retreating so I couldn’t body blow him (Even with Ian yelling “Coward! Stay and take it!” at him). I used a move I saw the first black heavyweight Jack Johnson use: if you have a longer reach you hold your arm out, putting your right fist directly in the opponents face. Then as you see them start to come around for an attack on the right, you throw a fast jab with your left as you pull your right fist back (that space where your right fist was is empty, leaving a big fist sized hole in front of their face). I think I must have frustrated J. because at one point he actually ran around to the back of my chair (it was locked), I crouched and defended, I couldn’t get in a good hit (there were cries of “Booo!” from a certain party). It was a good three minutes and I might have gotten in 5 or 6 decent hits. This is the excitement of bouts with higher level boxers, you can’t take as many chances and you have to think and act even faster. So getting a few hits is a major deal. I was really proud of that head hit. I know “good girls” wouldn’t say that, but I “out-thought” him and thus “out-fought” him….for at least five to seven seconds.
Of course, preceding this bout I was on oxygen and had already spent two “time-outs” in the stairwell (where the cold air is). See, with Linda, I am slurring and trying to say, “Just one more round” and she just goes, “Yes, yes” and pushes me into the stairwell anyway. So Ian came over to check with/on me. Then Linda and I and Ian argued and I wanted “One bout!” I just kept saying it till he agreed. Well, guess who had to do the one bout.....J. So he sees me getting pushed out of the stairwell with the oxygen tubes going into my nose and he exclaims, “Oh, you’ve got to be kidding me.” I gave him the EYE, and a weak “bring it on” wave with my gloves with a big shit-eating grin on my face. Hey, I was getting my ONE ROUND BOUT! J. just exclaimed louder, “You’ve GOT to be kidding ME!” Ha ha ha ha!
Yeah, I might be down, but don’t count me out!
Wednesday, November 21, 2007
“You need fuzzy and thick socks!”
“I’m not blogging about socks!”
Well, actually it turns out that I am. And the blog post about 'what value does a person with a severe disability have in society?' can wait till tomorrow because, news flash: winter is coming!
It turns out that my feet have problems beyond this nifty trick where I can drop things on them and not feel it (a game Linda often gets quite cross when I play: “Come on, let’s drop the toaster on my foot and see what happens? I might feel that!”). The problem is that I don’t “feel” them exactly but because I have such poor circulation, they are actually slightly blue AND sometimes there comes a pain from my ankle type area which is just a dull roar. This roar wakes me up. It turns out that a) I keep the windows open to sleep because of heat intolerance, b) my feet are between my body core and the window and c) they are cold as in, “This body seems ready for dissection” cold.
Linda’s solution to this is these thick hiking socks in wild colours we bought when we were going to hike the West Coast Trail this September (yeah, that didn’t really work out, and thankfully I wasn’t in so much denial that I tried to convince Linda to haul my chair over the trails: “Arg! I will do this hike, I will fulfill my promise!” a.k.a. I am a nutcase!).
The problem is that I only have two pair. And (this is Linda talking) I need to protect the parts of my body that I can’t feel or I may not continue to have all those body parts. This was reinforced this morning when I was in the bathroom and I kept getting a weird waft of smell from….me! And the smell was so familiar but I hadn’t smelled it in years and years, a sort of apricot, dark fruity scent. Ah hah, my face lit up as I finally placed it. It’s the smell of exterior flesh starting to rot. Ohhhh, I thought, that is not good; I should probably check my toes…..later.
Anyway, I need socks and for some reason Linda thinks that my readers are a giant resource of non-grandmother looking thick or fuzzy socks. So here we are, the sock post! I actually started to search for Goth Fuzzy Socks. Guess what? Not a lot of hits. After a lot of searching however I did find a store called Sock Dreams which brought out a sock fetish in me I didn’t know I had. I mean, yes I have the thigh highs with bows and the latticed back with bows and some fishnets, and some rainbow and striped stockings. I got the sort of basic goth kit they give you at Goth Camp up at the Castle. But then I was seeing socks with bones on them. And socks with muscles on them (and suddenly I thought of Sara at Moving Right Along for some reason). These are my kind of cool and creepy socks.
There are Princess Knee Highs direct from Japan and socks made entirely of Cashmere (If you want to buy for me, there is no medical reason except….cashmere socks….oh how decadent, I feel like drinking absinthe) . There are some very cute spider-web socks as well as Pink socks with the Skull sewn into the socks, so it lasts longer. Because that is what important in thick bright pink socks, making sure you don’t have those tacky peel off skulls that flake everywhere (trust me it is really annoying and then when they are half flaked people say, “how nice, is that a map of the island on your sock?” or something like that). Pink skull socks are supposed to be scary, because 1) they are Barbara Cartland Pink so people are already looking for your 4 pounds of make-up and small dog. BUT 2) you have a skull on the socks which means maybe you aren’t either so cute as Barbie pink or as creepy as Barbara C. but some sort of twisted soul stuck in the middle!
There are also skull knee highs which are not to be overlooked. I know I sound like I have this total sock fetish now and it isn’t like that (well, after looking at Sock Dreams for a while it was). I just need socks that won’t socially embarrass me in public. Okay, it is winter, but I get some tacky fluffy socks and I am a lap blanket away from being accidentally wheeled into a bingo hall by someone collecting up all the old ladies. How can you groove with your Leather and Lace Corset when you have on your double knitted fuzzy orange knee highs? Yes, yes, Linda, I know you say toes are forever, but aren’t fashion first impressions as well? So can anyone aid me in a reasonable compromise; some socks to look forward to, or some thick socks you have found to do the trick in keeping your toes AND not have people patting you on the head or women in their 80’s saying; “How lovely dear, I have a pair just like those!”
I actually like the Pink Skull ones more and more, perhaps because they go with absolutely NOTHING I own (who does own that much pink?). If you have a sock opinion (or even a fetish), or experience, now is the time; Linda needs you and I need you (mostly to get Linda to stop hounding me). Until then, I am going to play; “Hunt that bit of skin necrosis!” – it is a fun game, and you get to use a knife sometimes too!
Tuesday, November 20, 2007
On reflecting about my life I realized that one thing I have always hated is a bully. Indeed, I have an intense reaction and step in when I see someone being bullied, which usually ends up with me being bullied instead. That’s how it always happened in the workplace anyway. And to me, the biggest bullies in my life right now are 1) my disease and all of the friends it brought to the party. And 2) the ‘medicos’ – the vast array of people who I spend waiting upon so they can tell me what to do, or what I SHOULD do; which oddly often includes my own home care.
So, The Plan is to attack each bully with a different strategy. For number one, I have proved, through monitoring of daily living that when I should be “maintaining” muscles, I am actually damaging them, and they are slow to repair. I have also proved, through monitoring two different operations, that traumatic injury, while creating pain and imbalance in my normal autonomic systems (erratic heart rates, BP, etc), does heal at the NORMAL rate. From this my theory is that for whatever reason, my autonomic system to heal the daily micro tears and maintain muscle mass are NOT working correctly but the systems to repair traumatic injury are. So, I intend to engage in activity that is strenuous enough to both break down muscles AND cause me to sweat (something I don't do anymore; hence the heat intolerance and passing out). I hope to do this twice a week for eight weeks. Yes, my body heat and heat intolerance increases after such exercise, as does my pain, and weakness for a day or two afterward (plus my heart rate and BP go a bit crazy, and I lose hand coordination and strength). But, if I am correct the benefits are: gaining back muscle mass and strength in my upper body, an increase of use in the circulatory system and benefits by increasing my auto-immune system against colds and flu’s (which for my disease could be potentially lethal – bummer!). The question is, how much pain can I stand and for how long? The heat problem is solved because; hey, we are going into December.
The second part of the plan is to deliberately devote time and energy to activities of ABSOLUTELY NO CONSEQUENCE. Part of being a ping-pong in a medical system and having a chronic disease is that you MUST become disciplined, take your pills regularly, don't overtire yourself, monitor yourself constantly. I live in a jail with an invisable jailer. At the same time I am trying to compensate for a life which is, time to face it Elizabeth, gone (and PERMANANTLY gone), I am always having the feeling of playing catch-up ("I used to be able to do so much more!" - ah Shut it Elizabeth! That boat has sailed!). I am ever attempting to make the time I am awake, the time I have some strength, the time I can focus into “meaningful” time.
I believe the first step in taking control of my life is ironically saying “No,” and first of all, saying it to myself. I need to do things that are wasteful, wanton, and indulgent. Yes, I can write every day, but I also need to spend my time just sitting in a coffee shop feeling the winter sun shining on me through the window; and do it for 20 minutes, or an hour. I need to play a computer game (something I haven’t done in a year). Do some thing that I am not very good at and which doesn’t really matter in the greater scheme of my life. Not just do things so that I can have memories or prove that I have done them (not that I am going to stop doing those too), but because I am indulging my curiosity, I am trying something new, I am taking a road less travelled.
On Sunday, I started the second part by going with Linda to the local video arcade (the first time in over a year); we played Air Hockey (I lost, every time I would catch up, she would slam another one home – turns out when I am seated, I don’t have that reach advantage anymore). We finally found a “Driving Game” that didn’t require feet; it was racing hyroplane boats and we played until we had each won a couple times. The girl running the till liked my red skull shoes; the girl grooving on the dance machine liked my velvet corset. I wasn’t just playing Air Hockey, I was a person again, wasting away a hour or two on a Sunday. Yes, I could have, should have instead been filling out insurance forms and making lists of doctor’s appointments. But I was playing Air Hocket and racing boats and the world didn't end.
On Monday I was back to boxing for 80 minutes. This time it took me 30 minutes before I started to sweat and I freaked out the instructor a little bit (the whole loss of trunk support, eyes rolling back thing). But I hit the heavy bag, I threw over 200 punches in a three minute round of shadow boxing, I did the glove practice, did two rounds of three minute bouts and participated in everything the class did; including throwing the medicine ball around the circle faster and faster in “pass the hot potato” games at the end of class. I was high on endorphins when I left and hallucinating with pain by the time I tried to go to sleep. And when those pills wore off in the wee hours, it was another 20 minutes of moaning and agony till the new ones kicked in. So, a few drawbacks, but I HAVE a plan, and I think a person with a plan, even a plan that others might think a bit daft, is still more motivated, and trying to wrestle with life (instead of with the disease) than a person who just lets the days drift by. I am done with life drifting by.
So what if I am wrong? What if I waste a month doing frivolous things (as well as the needed things) and spend two months in pain and I DON’T get better? Well, in that case, I will come up with The New Plan. But let’s try cheering on The Plan for a while first and see how it goes. And this weekend, I am so going to kick Linda's butt at Air Hockey.
Monday, November 19, 2007
I guess what first drew me to note the deaths of, in particular, t-women was the type of prolonged and exaggerated deaths. These deaths, so brutal to almost seem out of some ancient and foreign war would usually result with a jury of 12 assumed sane individuals saying “Well, since they didn’t say they were transgender, I guess stabbing them over 60 times is kinda reasonable.” I remember, about four years ago, reading about a t-woman who had been tortured with a knife for over two days, stabbed repeatedly, before being set on fire while alive. I remember it distinctly because it was in one of the states which don’t collect hate crime stats, like Alabama for instance (I actually believe it was Alabama). And they had a quote from the local sheriff saying, “We’re not investing this as a hate crime.” Geee, tortured and set on fire, yeah, I’m not seeing any hatred there. Then there was the young teen in New York who was chased for several blocks before falling down; the man who had just had sex with her stood over her, fired into the body, the gun jammed, he RELOADED the gun, and fired until the gun was empty. He said something like they all say, “It was the heat of the moment, I just did what anyone would do.” What ANYONE would do? The problem is that almost every city, if you dig enough has at least one murder like this; if not at least one serial killer targeting ONLY t-women. And, I guess it is what anyone would do because I don’t remember the type of panic surrounding the Washington Snipers when in the same city a few years before, EMTs made jokes while Tyra Hunter bled to death. What, we have to ask, is so wrong in a society that the same people who would run into a dangerous environment to save a dog, would make jokes and laugh while watching a human die?
I wish I had a better memory with names, I don’t remember their names and I’m sorry, though because I am a story teller I remember the stories. Indeed, a few stories, I searched again and again to find their names. There was one transitioning woman from the projects who volunteered for teaching kids to do jump rope - and took them out the projects for a competition. I remember that she was considered a local joke. That she was often supervised while with children. She took a group to Atlantic City and had missed the deadlines, the officials wouldn’t budge so she took the kids; aged 11-13 to the beach. Two of the children swam out too far and she swam out and rescued them. She drowned rescuing them. I remember because I didn’t think you heard stories like this anymore; someone dying while rescuing children. I remember that the locals in her hometown had the opinion post death that, “I guess she wasn’t all bad....for a tranny.” I think if it has been someone else they would have been nominated or won some award.
When I was living in the UK I remember one particular newspaper story, a local boxing coach had come out and announced to the club that her name was (oh this eludes me, it was something very British, like Doris). She was stabbed to death that evening by one of the boxers from her own club. I remember thinking, “She wasn’t able to live even ONE DAY as herself before she was killed.” Truth be told is that I almost prefer the sadistic brutality of the US and Canada to the stories when I was in the UK. I remember in the Guardian there were two stories in ONE DAY. A transitioning female who worked at Tesco’s had been brutally bullied by co-workers over months and went home and hung herself. The father stated that his SON was a mentally ill alcoholic and this was probably best. I mean, her own father.... The second story was about a transitioned woman who has put up with harassment by pretty much everyone in a small town for TEN YEARS and the day before had simply walked out in front of a bus. I remember these stories because, MY GOD, ten years? But that both of them had the same sort of editorial tone: it is probably for the best. Hmmm, that’s odd, because when a man just suddenly stabbed a gay man to death on a bus in London a few years ago, Ken Livingstone made a comment about how intolerable it was in this day and age.
So what is there to remember? I think we should remember Mea Culpa – It is our fault. Society is made up of individuals and if the US somehow figured out that killing black men in the 1950’s was NOT OKAY, maybe it is time we as individuals should figure out that human rights and dignity are just that; rights and dignity for every single human; not just the ones we look like, or identify with. If we are unwilling to say, “This is unacceptable” when a transperson is discriminated against, when violence is done to them, then we are telling the world the limitations of US, not them.
Anyway, early this week Marla gave me for an award as a Wonder Woman. And I get to give it to two people. So this is given equally to Sara from Moving Right Along because she has been teaching me that being labeled “terminal” doesn’t mean you actually stop living; and equally for every transwoman; not just because coming out and telling the truth is likely the most dangerous decision they will ever make but because they are living daily in a world which often gives them hatred and scorn for an act of courage and determination.
Since it is November 20th, what do you think we should remember to make our society a better place, a place where transgender people don’t have to live in fear?