Often, on the web, or always, on the web, end stage people who do blog, even under another name get doubted, get people not really believing. Maybe the person is laying? Maybe it is all a set-up? Maybe it is for attention?
Or maybe you have never had that disease and been inside that skin?
And also, as the posts get shorter and the ‘style’ seems to change, more nitty gritty, less ‘FUN’, less about the good reads we had when we first started going to that blog, then people tune out, or worse, far, far worse, drop silent (or just post doubts).
But then, maybe the person’s life has gone from 20% taking care of a disability/disease to the ‘up in the face’ aspects OF nitty gritty. That pain levels, flare levels, will there be hospitalization, what kind of caregiver, is the caregiver changing are like a 767 airplane taking off directly above your car. And that makes them a bit more important than the cornbread recipe that people used to expect.
And of course, Pain makes you a bitch.
Well technically Pain makes you HER bitch, but not in a nice or ‘let call this sex” but ‘more like rape’ way. Then the world changes.
Because the human body has
But is ‘Pain’ the right word? Pain is defined as, “hurt or discomfort” or “mental distress” and has synonyms: ache, pang, smart, stitch, twinge
Okay, well according to that, I haven’t had pain in a LONG time. Like at least 700-1000 days, maybe longer. When I was untreated Bipolar II the pain I had which was like grey bones grinding made me lay immobile for up to 20 hours a day. And that was for 5-10 months. Which, considering Bipolar II is considered to have the most debilitating pain of the depressions, and that sounds like almost a manic state of joy to me about now indicates that depression pain (which is real, and hellish) is not a good yardstick.
Some of the most extreme literary quotes:
“For a second he remained in torture, as if some invisible flame were playing on him to reduce his bones and fuse him down” – D.H. Lawrence,
“Generalized racking misery that makes him feel as if his pores are bleeding and his brain is leaking out of his ears” – T.C. Boyle
And I am thinking, “Well, that’s kind of what it is like when it is GOOD, or tolerable.” Makes most of the quotes on pain seem like humor:
“The hurt I felt … was something like a thumb struck with a hammer”
“Felt as if I’d been crushed between two runaway wardrobes”
“hurts like gravel in your shoe”
“Bruised like a half-back in a football game”
So thinking, “Those lucky, LUCKY people!” makes it, since people tend to personalize more than empathize make me or someone like me seem callous. Except I have had most of those happen and they, well, I walked about 200 miles in boots that literally sanded my toes into blood. I would walk for 10 miles, then wring out the blood and let it drain out and walk again, up mountain and with backpack. My feet made, well, every long term hiker, people with thousands of miles of hiking, 30, 40, 100 day hikes feel ill, say, “I have never, ever seen feet that bad.” So I hiked in high tops, and sandals and let the blood run out. And now I look back and think, “If only I could bottle this last year, it would have meant nothing. (except maybe an infection and amputation, I guess – but painwise….easy, like a jog uphill).
I had a bad night. I don’t have any Lyrica samples. I don’t have a doctor who will move me up to Fentynal, and I am on 150% of the maximum of all my pain drugs (four different ones). British Columbia’s ‘compassion’ fund for Lyrica rejected a claim in two days (which is like a 2 minute turn around time in BC/Canada paperwork time): no money. The pharmaceutical company says ‘Our phones are not currently working”, and no one has samples. No doctor and no solution except: pain and fear.
Because, like last night, I could not move. I couldn’t move because my body wasn’t functioning. But I still moaned and mewled in my sleep. And I woke up every 75-90 minutes to scream myself into exhaustion, and pass-out/sleep again.
Linda, the times she wasn’t out, would say, “We need to help your pain.” And offer me water. The nurse line said to take me to the hospital. But she went out for a walk with a friend for a couple hours instead. She says looking back, she would have taken me to the hospital. I think it might have been some hope that sleep would ease pain. I have to be in quite several pain to moan, groan, mewl constantly the entire time asleep.
I don’t have a nice metaphor for you about what it felt like. I do know this, that I remembered an episode of House one of the times I was screaming for 5-9 minutes. One of the MANY episodes where he wakes up a burn victim or someone in a coma induced to deal with the pain so he could ASK THEM A QUESTION.
I remember thinking of that, while I screamed, sort of expecting him to show up and ask me a question, because a) not enough energy to move, b) screaming awake or asleep – perfect for House, M.D. And I remember those drugs he takes for his LEG pain. And I planned, as soon as I could MOVE to find Dr. House, and to take his medication away, and beat him unconscious before having a truck run him over, and then reverse over him and park……..for 14 hours. Of course, later, only AFTER I had enough pain medication did I realize that he was a TV character.
It just seemed that his view of pain from those IN extreme pain so perfectly summed up how people DON’T feel others pain. And quite honestly, will go to lengths to emotionally shield themselves to avoid doing so. There are no lack of doctors who know the pain I am, or hospital personnel. But “Not my inch, not my patient, I have a policy…, I don’t prescribe those drugs usually, yada, yada” (What if there was a truck parked on them for 15 hours? Would any of those policies change……..at least towards themselves?).
People are silent because ‘I don’t know what to say’. Well, except for: “AHHHHHHHHHHHHHHHHHHHHHHHHHHHH…AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH…AHHHHHHHHHHHHHHHH” (repeat with crying for five minutes, that’s about two seconds there), I don’t either. But I write about it anyway.
People stop associating (brother, sister in law, all other relatives, uncles, aunts, the 30 here in Victoria, the 8 in Vancouver, the 40 or so in the Prairies – don’t want to deal with it, don’t want to deal with caregiving). Friends, associates, online friends, and of course parents (who I hope enjoyed that second cruise in three months, and the trip to see my brother – I haven’t seen ya in, what? Nine months. Or had caregiving of even the most basic level for two years, not even a drop off at the doctors? And you were blocks away? Now THAT is what I call ‘CONDITIONAL LOVE’).
This is not uncommon, in the excellent book What Happened to Lani Carver, Claire is a remission of leukemia, going to high school, still the ‘sick girl’, always trying to be the ‘good girl’ and likable, always second fiddle to the ‘best friend’. Until being with Lani, and sticking up for Lani gives her not just a wide awake in peoples’ self interest delusions but also in facing and taking hard choices. One choice was to ask her stepmother, after a lot of bad shit has gone down,
“I asked her point blank, to her face, “Why didn’t you come to Dad’s apartment when I was doing chemo? Were you grossed out by me?”
“She told me she was very afraid of death, though she couldn’t figure out why – maybe just because artists are afraid of everything. She said that seeing me back then inspired her to make anonymous donations to the American Cancer Society, though talking to me to my face had been too much on her.”
When I read that a “It isn’t just ME!” light went on. Because here is someone who is supposed to be a parent, and there is a child: a young child, maybe 13 going through chemo by herself for two years and her stepmother just LEFT. I mean, just ‘wasn’t around’ but they made DONATIONS to the cancer society (ANONYMOUSLY!). Like the fear of anyone connecting her to her own step daughter was far, far too much to bear. A girl needed her, and she wasn’t there, because she was afraid. Not like Claire was afraid, right? No, Claire was actually a whole lot more afraid, only Claire had no choice, the disease made the choice, and this adult woman made a choice too.
Pain chooses you. At least the ‘hey, we are ripping up your body’ kind of pain. Which is the kind Torture falls under, or ‘Mutilation Torture’ because the reason it feels that way is you are never going to be that way you used to be ever again.
So people step away. What was the ‘passing out like?’ I asked Linda.
“Like a baby fussing for a while before…”
FUSSING?
I asked if a lot of babies sounded like that? No. And the moaning WHILE asleep? “Well it could have been a lot of things.”
“Oh.” I tried to breath, “Is that what you thought it was? A lot of possibilities?”
“No,” she said, “It was because you were in pain.”
“While asleep.”
“Yes.”
“Completely asleep”
“Yes.”
“And the screaming when waking was that like ‘fussing’?”
“I didn’t finish what I was going to say on that…” Pause “And I don’t want to, it was a bad example.”
And yet here is Linda, a compassionate, loving person who is worried enough to call the RN, and is told to take me to the hospital. Who knows why I am moaning in my sleep, and knows that changing the block of ice under the pillow might wake me up, and knows that the pain was more severe than she had seen, and she has seen a lot. But she does this this verbal dance. Why? She said if I am ever like that again, she is calling the Ambulance, and she SHOULD have called the ambulance, and yet, there is this dance of words, of ‘fussing’ and how the sounds while sleeping didn’t HAVE to mean pain, she just knew that they did.
Is it because there is no way for someone outside to ‘know pain’? Linda says she could tell I was in unbearable pain. Except I do bear it (Except House M.D. isn't a real person), I bear it this very minute, I have borne it for a week, a month, a year while insurance ran out, while GP ran out, while tomorrow was going to be the 'time to deal with it' until todayLinda is feeding me yogurt a spoon every few minutes because I can’t move anymore, or swallow correctly. So all the ‘good time’ to go deal with it is done. I am in pain, and so a bitch. And in four hours Linda tells me three to four times she is leaving, she can’t care-take and is going out again for hours, then when I call Health Authorities to get someone to come, she takes the phone and I am ‘confused’, but later she tells me that when any care worker comes she is ‘out the door that minute’.
Without a caregiver, I can’t eat enough to take the pain pills. Without a caregiver I can’t do anything except….welll, wait in pain. And so I am scared. I am very afraid. In telling the people at Health Authorities I am ‘confused’ it means they will not come, and may not in the future. I am sure she almost as tired of this as the person in the pain, me. I am sure she hates the pain as much as I do, and what it does to me, making me bitchy and bitter, tearful and scared, a right mess.
But her leaving me while I slept for a couple hours meant I woke, I screamed, I cried, and I wailed, all alone. Her putting on her boots to leave means that I may not eat today. And that this pain may never be dialed down 30% (because the pain is never less than 50% anymore, rarely less than 60% of maximum, and there always seems to be higher and higher maximums). I don’t laugh, or smile, or joke – and I wish I did. But when agony is behind and agony is ahead and the possibility of that doubling because I said something wrong, or she just got cranky, becomes too horrible to think about. And yet she is the one who IS here. When other people come, if they come at 2:30, I sleep until 2:00 so that they don’t see the ugly mess that is the majority of hours.
I think we all wish that those with pain so bad were just ‘fussing’: but to come out and write it about them, or say it says a great deal more about OUR need to run the hell away, than about what is really going on with the other person.
No one chooses this.
Care giving, or caring: that takes more than choice, it takes the power to hold on, even when it is hell and you are it. To be all that someone has, and they happen to be half insane, and stay or go, that is a choice we will all have to face many times in our lives.
Some pictures I want to add of the kind of daily body alterations which show you it is edema (the failure of the vascular system: solved by….um, a complete vascular transplant or death – too bad there are not complete vascular transplants, eh?) and how that can look so different every 10-12 hours. So no, did not just suddenly bloat up, it is simply blood/water that cannot leave, because though I am still alive, my body isn’t able to function with the circulation system it has to my arms and legs.
My heart erratic and with difficulty breathing, I gasped to the worker, “I…come...back…don’t….911”
Then I passed out and stopped breathing. I came to for less then a second and passed out again. When I came to the second time, I was breathing shallow and couldn’t move. A couple of minutes gone.
The worker was holding my head upright. This isn’t what she saw in her job. “You can pass out at will?” she asked, amazed.
“No.” I breathed and waited for enough force in my diaphragm to speak, “I can always pass out. Use the will power to stay conscious.”
Yeah, I use will power to get out of bed, to stay conscious, to stay upright, to blog, to email to do anything despite the pain, the erratic heart, the purple fingers, the purple arm. And when I fail in will power, then I lie there until found. And the next day, I gather my will again. If I do not do this, then "I", the Elizabeth is gone, and I am only the disease. But sometimes, I need to rest, just for a bit, so if someone is there to call 911 if things go wrong, I let go inside and let my body fall, my consciousness sliding away in images of green.
How is that possible? Because I am ‘special’? No. Maybe because I am desperate. I am desperate to grow as a human being. Some days I feel that I have no gender, no name, that everything is stolen from me, as my disease determines everything from sleeping and what I eat, to what I do and when, and how much energy I have. I am death, one kind of death on and under the skin.
I am also driven, desperate and driven by the ghosts. I have lived a lonely life. I still live a lonely life, an extremely lonely life. Why? I don’t know. But I learned that no matter what happened to me, or what I did. That my body could be hit until I sobbed, that I could be hungry that I hoard until the hoards were found and I was punished again. And I learned that there are people who look for the fear, the fear of the knife, is what I had, to be tied or restrained while the knife traveled around my skin, up and down, waiting to bed. I learned to be laughed at, or be in a position where if someone says to lick a foot then I licked the foot. Because I knew something they didn’t. That in the breaking of me, and I was broken, that in the dominating of me, and I was dominated, or treated as an object by so many, so many who wanted control, absolute control of me, body and mind. And so they broke me, and ordered me: parents, siblings, pedophiles (I guess that is what they are called), abusers. And I shook with fear.
But I knew inside I was still free. I learned that what the body does is what the body does, as is what happens to the body. I learned young that even if I decided to NOT be broken, that I would be ‘broken and disciplined’ in the name of God, and yet the next day, pop up again. When, in just one of the dozens of ways I could be punished as a child (8 or 9), I was punished for speaking any single negative statement by being forced to eat jalapenos, one for each word/statement, without water.
So I went and spent all my money on jalapenos in secret. And I kept eating them. And crying. And I was punished and broken 22 days but on day 23 the jalapenos didn’t work any more. Not because I wanted to say, “You are a big fat head!” to my brother. No. Because I wanted to be free, and no matter how many times I was treated like an object owned in body and mind, I needed to be free. But I was so alone. So alone.
I could be licking clean a shoe, but in my mind, I was thinking about the food I had left out for a stray cat. What happened to the body was not who I was, it did not diminish me. It does not diminish me. Only I can diminish me by failing others, by failing myself in not being a person who grows. Because a person who does not grow, does not learn is already dead. A person who does not want to become a better person, because it has risk or might hurt, that person has gagged that part of them which can be MORE, who wants to cover themselves in a living death rather than try. But I will attempt to wake them. It is my call, my vocation.
I am scared that I am not growing. Scared that in forcing myself to breathe though it hurts so bad, to do postcards,
to do this blog, to do emails, that I am not growing, but just forcing myself to keep up to a person who is gone. The EFM of before is gone, I cannot do what she did, I cannot be who she was. Yes, I go to badminton, and will tomorrow, and I have a 5K or maybe 10K on Sunday (though the bike shop said the front wheel may or may not make 5K – but I have wheeled on blown wheels before). For me, to do something that threatens my life is like lying down in a bed of soft moss, there is no loss. What is hard is staying, and finding ways to care about ME, about now. And I am trying, very hard, trying to find a way to be excited about now and not just the light so easy to fall into.
But I do the postcards, and this weekend, after I woke from the semi-coma and was so dizzy I hit and fell over a great deal, I spent the rest of the time on postcards. Because what if one of those postcards is to me at age 8 or age 14 or age 24 or age 30?
What if one of those postcards tells someone ready to stop fighting, ready to give up that they are not alone. Because they aren’t. And I have to remind them of that. I know that makes me sound like a nutter. I get the postcards in, and I send them out, the best postcards, the ones I like the most I send out the fastest, like this bi-plane,
because if I think about it I might want it and that is not my job (to collect). My job is to care about others and stand as a place where anyone can email me about anything and I will try to be there for them. What communication occurs between us is protected. And I do receive abuse. Daily. Because it is a public place standing up and saying, “I care. please, trust me that I care about your health. I care about your loneliness. I want to show that dying, like living, can be more.” 
So yes, I get abuse everu day: Emails, comments, stating I am a thief, a liar, a scam, or just people hurt so bad that they lash out in pain at anyone. It hurts. To give choices, to show people that there are choices and that taking risks, on themselves, on others is worth it, even if it doesn’t work, is why I stay conscious. So I bear it.
I will never know if a life is changed, or a day is changed. I’m not raising money for cancer, or my disease, but I am raising myself, failures and attempts, up to show any person that maybe what they believed was impossible is not, that the greatest limitations we have are those we put on ourselves because we are scared of being hurt…again. We are scared of being hurt for good reason, and I show that I get hurt, and I get up, and sometimes, it takes people to hold me up.
These days, to get out of bed, to breathe with oxygen is about my limit, and yet I do badminton. How? Because if I can wheel to the door, can I wheel to the elevator? And if I can wheel to the elevator can I wheel to the sidewalk? And that is how I do it. And sometimes I just dream, and then people, the real heroes in my life, figure out how to do it. I wanted to go to Hawaii, and in a month, I am going to Hawaii. I am going to the Honolulu and the Big Island, to see lava flow, to see rare beaches with dolphins and sea turtles.
I will see the stars, I will see the ocean, and I am so ill that I have not seen the outside, or even the window in days. I am so ill that I could, if I chose go to a hospital, go to an assisted home. Go to be assisted until I die. But I am going to Hawaii instead. Carried by my partner, my sister and a few others.
So this weekend, we did 71 postcards, and last weekend we did 40+ postcards, I don’t know how many. So the ghosts of the me, hounded and almost broken, are quiet again. I want to be here for everyone, and yet I can’t. I’m still so lonely. I’m still working on not breaking, or breaking under the pain, and yet coming back. It is hard but I am not alone, not all the time: a friend who talks manga, a partner who likes to eat and thinks I should, even after I can’t taste, and a plushie, a stuffie.
Sometimes plushies aren’t enough.
I also went to see the cats. To photograph the cats.
I will write a full blog about visiting the cats but again, all the cats shown last time were gone. Including the serious faced black and orange cat named Carmen which rode with me in my wheelchair. I know where one of the cats, now renamed and lovingly homed now lives. I thought I would be alone but I had a new young cat named ‘Smurf’ rode around with me 
(seriously who does the naming?).
Smurf looked like a slightly older version of one of the kittens (a few new ones had arrived) I called Scamp.
Scamp may have been tiny but he liked to go everywhere, here is TRYING to get up into the chair, but his climbing skills are not quite up to it, so a bit stuck mid-way 
(yes, he finally made it up). Linda said she wanted to adopt him and smuggle him into our apartment that day!
Lulu, who I want to show a lot of later, is a cat who is a few years old but doesn’t want treats, or string to play with but LOVE.
This is the most affectionate cat I have ever come across. Lulu simply loved and enjoyed being loved in return.
Elmo was a cat a could relate to, having been only 2 years old and used to small dogs but the owners were moving and so there was no place for Elmo.
Elmo came with his own bed, a last remnant of home and besides coming out to find out, ‘are you going to take me home’, Elmo retreated back into the bed, remembering and waiting.
I know what that feels like.
Vicky was a one year old cat who was a bit shy but still very intellegent and observant.
She just didn’t want to risk coming down, that didn’t stop her from trying to find out about this person down there in a wheelchair, and hey, what are you doing down there?
I will do a cat blog soon but Linda has come to check on me. With the risk to her job gone she is back at work for the government, but what she does exactly I can’t tell, seriously,
I can be charged for “Treason to the Queen” for talking about it. So to the bed for me and the construction across the street, going on despite rain or anything else. Starting at 7:00 a.m. and going for another 400+ days.
Later!
Spring is supposed to be here, and I think it is trying, though snow lies in the shadows and corners. In this picture Linda says the woman is celebrating the ladybug on the fence. Linda has an..um...interesting view of life sometimes. I think, like me, the woman is just glad to be able to get out, to know that growth is here.
The earth turns, the earth rotates around the sun and in this hemisphere as we hurdle a bit closer to the sun it brings us to the annual time of growth. Planets can be pretty nice things sometimes.
Last year, I was getting ready for Japan; what a difference a year makes, eh? I have a book on the anime girls of different prefectures of Japan and I definitely want to find this one. Any place where you can get a sign saying, “Beware, monkeys may steal your clothes” at an onsen is an onsen worth visiting. 
The paper we were handed by the tourist association and JR which told us at Miyajima that if deer ate our passport or train tickets, they were not responsible. That seemed surreal and a wonderful joke. Then we ran into the German couple whose map HAD been eaten right off the ferry and had been lost ever since.
At Nara, where we not only saw a World Heritage Site (oldest largest wooden building in the world) and were chased by monks (to throw us out after Linda went Camera Whore), I learned the difference between feeding squirrels and deer. That when two deer who are fighting over a harem stop because they believe this object over here has food, you GIVE them the food, and fast. So that way they can go back to smashing their horns against each other. The only serene look I had feeding the deer was when my food was gone
and I sat with the bucks that lost and watched the super-aggressive ones mug other people.
Okay, enough procrastinating, right? That was my rather lame intro to fear.
I learned fear the good old fashioned way, helpless, terrified, pain, the usual.
But as Linda is finding out, fear can come to anyone. I will show you that in a bit.
See, we grow up and we think that we can't be reduced anymore to the states of fear: the helplessness, the dependence, the lack of choices, the knowledge that being alive is fiscally the worst thing we can be to those we love. We are ADULTS, we aren't little children anymore. How naive. We think we know where our sunny road goes, we have it planned out. 
The truth is, we don't know if there is a cliff beyond that curve, but this is YOUR road and you have to follow it to the END....regardless.
This is why individuals have petitioned for euthanasia. While I don’t think the people who FEAR ME, or those disabled like me, the people fear those who are disabled should be allowed to petition. But whatever your stance, if you are in a position where your income is fixed, your disease/disability is variable and suddenly change, expensive change is looming, then you are looking at options, bad options. You could be put in a sort of disability/old age prison system we often call nursing homes. You could literally bankrupt your family. You could be dependant for an unlimited number of years. And the fear in your gut, what does it tell you? You have never had days you said inside you would rather be dead than hurt endlessly the ones you love? Well, I have.
That we don’t have an adequate system to give a life, and yes, a death of dignity is the fault of all of us, as we are all part of a society that embraces the diseases which have the best chance, the longest remissions. Maybe after the several thousand strong run/walk for breast cancer there is another one of 10,000 people raising awareness for ALS, or SMA I&II, or many of the hundreds of things from RSD to Gillian-Barre which just strike and change your life forever. Leave you just out of the edge of society and vulnerable...forever.
I have fear everyday. I think it is part of disease, as it is common with those who have mental degeneration. Sometimes, I am ‘having a good day’ and sometimes I am not. And when I not, I am scared, or rather, I don’t know how to hide how scared I am at things and people.
I have ‘good hours’ and ‘bad hours’. This is hard because I don’t want to expose myself, I hide it from Linda and Cheryl, just like my Grandmother is still trying to hide it. I’m not in control, not even of myself, and so any change can induce panic. But before I tell all, I will show you how fear works on BOTH sides.
See, this is me, maybe the me you never fully saw, only know the me of this blog. This is the kick-ass, so what, attitude I have/had,
that I am going to overcome the world and I have the brains and the drive to do it. I AM larger than life, or I was, and when I good, when I was at my best, this is how I looked; full of joy, full of adventure, and saying ‘come with me.’
And this is what our life together was, it was challenging the world, it was challenging ourselves, because we had each other.
We always had each other and Linda knew that if things got bad, I would do what was needed to get it solved. There was always a way, even if it meant working an extra job, even if it meant stopping a dream for a while, it was worth it for her.
And then I became sick, and recently very, very sick. Like I should be dead sick. And she has to watch that. I don’t. I don’t know how sick I was last month, or two months ago because my brain was damaged and maybe I should have taken videos but is that what I want to leave behind, a visual record of my degeneration? I know from the ‘my GOD!’ exclamations of health workers and health professionals that I am not exactly looking rosey. So for Linda, there I am, making a joke, and she can believe, fool herself for a while that THIS is our life. That is when I start to shake, because my brain is literally on fire. And when I have finished bruising myself, I lay there. Or rather I DON’T lay there. A body lays there. A collection of meat in the shape of a body. And ONLY if that body’s brain gets oxygen AND it breathes, if it has brain activity, will that body actually become a person, a loved one. One minute passes. The amount of time to keep the body alive shrinks. You/Linda call to the person inside (are they inside?), you yell at them, you touch them, you do everything the EMT's taught you and two minutes have passed, going on to three. You start breathing for them, because you are afraid.
Because in a few minutes your world splits and you HAVE to have this person back, or face being without them.....forever.
And when that happens, when you see the person you love dying. And when it happens enough time, you get angry. Why you? Why this? Why? You didn’t ask to have to endure taking care of a person who you turned to in time of trouble who doesn’t even know your name. Why? And that anger comes out and they see it, and they are not having a ‘good day’ and they are afraid, and they cry and you feel horrible. In fact, at nights you listen to them breathe, or maybe after a while you don’t because you can’t stand how they stop breathing for a while. Eventually you don’t know how many times you have revived them, or helped them in bed as their heart stopped beating correctly change position so they could breathe again. And you start, as you see the progression continue, even speed up, to stop investing yourself so emotionally in them. And the partner, the person you shared your life with, can, on the ‘good days’ feel you drifting away, your face going blank, as you are already preparing yourself for the death.
How can I hold on to you, when I am too weak to hold on to life alone? Your hand slips so easy from mine…
This image is from a show called H20:footprints in the Sand, from the poem about the two sets of footprints and how when things got tough, 
there was only one…..because God was carrying you. And then, as images flash a voice calls, BUT WHERE WERE YOU WHEN I CALLED?
That poem is for those who are hoping for the full recovery, who don't know the minutes of watching a morphine button, or whatever your hell is (and forget that up on the cross, when Jesus call....God WASN'T there). The poem is easy, simple. Living with a disability, a degenerative illness, is anything but easy.
I can only tell my story, and my story is that when I saw the movie Superman, the original, and he rotates the earth back to save his girlfriend, I was angry. Because why didn’t you turn back the earth for me? What was wrong with me? That was probably the number one question I had. And in the end, growing up in a Christian/Old Testament style church/cult the only thing that made sense in the end was that I WAS the sacrifice. Because in every old testament story, like Abraham about to kill his only child because God said to, or Lot offering up his daughters for rape, or King David losing his kingdom and his favorite son; no one ever asks the sacrifice. Their job is just that, to be the sacrifice, the cost that pays for what others have done. That is the cost symbolized in the Azazel: born, and then chosen by God to bear the sins of the people, to die, staked out, a horrible, slow and painful death. This I could relate to: to be staked, to be tied, to be hurt, to be told that I was sin. Soon, I would learn about pain, and fear, and what can be endured.
My body as sacrifice I knew. So this is how I made sense of my life. This is why I tried to get God to kill me when I was 20 or so, to show me the face of God. I only learned that I could endure pain, more pain I thought possible, but I could not die. That to go forward was always opposition, or someone to stand up for, more abuse to absorb; and I gain my Doctorate in time to get a disease that destroys the brain. This is why I have no questions, because I am doing my job. If you have anger or hatred, send it to me, email it to me, yell it to me, whisper it to me. Because that is what happens, and the fear I feel, the agony is the job that I have been created for.
You see, I waited, and waited, through days and nights, and things so bad, and weeks and months and years that are best forgotten, if they weren’t written into me. I see as much like The Penal Colony, by Kafka where they are written upon me with a pen of steel as I rotate, only I never die. I waited, and waited, but a hero never came.
Today was a day of fear, lots of different fears: fears of the future, fear of being put in a home, fear of living on the street, fear of leaving Linda hurt and alone, fear of leaving Linda with horrific debt. The shining path? Death. I don’t fear Booth Gardner telling me I am going to die, I don’t fear being told I am going to get better, or that I can be better. So what that I won’t walk? If they can keep me awake with energy 15 hours a day I WILL get at least two jobs, I will write enough books to make the bookcases bow in weight. I have the demons of myself to exorcise, the feelings of failure, the feelings I made Linda suffer, and my parents, or father to whom I am a ‘disappointment’, my grandparents, my father’s father who never acknowledged I lived. I have demons in me and I am used to their weight on my back.
What I fear is being told, that they can ‘stabilize me’, that whether they understand the damage or not, this is how I will live, for at least three years more, just like this. 
We have no savings, what money we have to go to Booth Gardner we got from YOU – our readers. I am on oxygen. Linda has to get up twice a night to get me pills to stop me from screaming in pain. I am a cost of at least $15-20 a day. This is what I fear, that Linda will continue to be harassed as she was because I am disabled, because I am her partner and I am unable to defend myself. That she will be abused verbally and emotionally. That she will bear the weight and responsibility of a job and a dependant that WILL NOT DIE. But also who will not get better. That is my greatest fear right now.
For the rest, well, I have to sleep twice a day; so I have nightmares twice a day. And I am degenerating mentally. I also am disassociating. I started to HELP, to create the ‘counselor Beth’ for Linda, or the ‘Brainstorming Beth’ for Linda but once you open the box, then out comes the ‘Scared child Beth.’ 
I don’t know if it is part of the brain degeneration or part of my sexual abuse or just part of this hell situation but it happens. I just don’t understand. I am afraid. It is hell, for me and for those around me.
That is what I think many people go through or are going through. I don’t know. The problem is that Linda and I have both been battered and abused so much that we both have ‘regression days.’
Which leaves the question, “Where is the adult to check why Beth’s hands are blue?”
My frustration: that after decades I finally conquered one of my devils. No, I was not at peace. I haven’t figured that one out yet, but I did WANT to live instead of want to die. I was able to look and talk about my past without out being consumed by it. I had a future. The clouds had parted and I was free.
I wanted to live. For a couple of years, even the first year of the disease, I still had that feeling. I can't remember much of this last year. But now, I want to die; to free everyone from this horrible drama.
I want Linda to be able to move on. I want my job to be over, I have been staked, I have suffered, now let me die. Let me serve this last blessing. I’m not supposed to say that. Probably because it is the truth. I went to visit my grandmother and I saw myself in a few months, if I keep living. She was nice, but she was using all her energy, all her intelligence just to keep up with what or who was there, even if she didn’t know them. Was she scared, not then, but at night, I’ll bet. I am scared at night. I used to love the night, watching the night and moon pass over the world (I didn’t have bunnies to share snacks with),
but now, I fear the night, I fear it as it is when I grow tired. I grow afraid, I have to sleep (have nightmares), I have to have a tomorrow (meetings, schedules: things I don’t understand where people will not allow me dignity), most vets I know treat their patients with more love, patience and caring than medical practitioners, or care givers. I fear them.
I know that it is likely that I will be afraid for every day for the rest of my life, however that long it is. I know that Linda, for many of those days, will have a tinge of fear, unless she builds her wall strong enough, locking me out. I don’t think she WANTS to do that. But I understand if she has to.
I try to find the minutes between the fear, the moments where I am surrounded but I have forgotten, or I can keep trying to grow or move forward. I sold a DVD today, that gave me a few minutes. I haven’t stopped fighting, I also haven’t stopped the job appointed me. Yes, maybe it is easier to fear when you are in pain, or when you have been abandoned by so many, when you have pain medication bottles with no refills, no GP, no where to go. But there are times between that fear.
I am not paralyzed. I managed to write about it….in the end.
Today I received a package from a reader who sent me over 100 postcards of kink, bondage, and fetish prostitutes and their numbers. If you want to whip a woman, if you want to chain one up, whatever you want, there is a number of a woman. All women who sell sex.
As sex positive as I may be, when I receive a letter from someone who reads my blog, who reads of my rapes, who reads of my being used as a sexual toy as a child by adults. I don’t know of any woman who has been raped who would receive dozens, and dozens, hundreds of images, like this, without triggering. The accompanying letter told of a conversation in which one male told the other male ‘with a smirk, “Send them to Elizabeth”.’ Yes, send them to me for that is what and who I am, a series of holes to be used, an object, a thing, an item, an it, for rent, for money, for being overpowered, for being beaten; this is who I am, hundreds of images of who I am.
They say, it is not your fault, at least that is what women who have been raped say. Is that what men say? Or Edwardian Grandmothers? Or am I just a whore? No images today, I have to sleep, or not, because of images. Because 75% of those street workers interviewed WERE sexually abused by a father figure (father, step-father, someone who should protect, someone who should care more about that person than their own self).
Send them to Elizabeth. This is who you are…..
(I will send out postcards this weekend, not because I receive mail, I don’t, or I didn’t this week. And not because I won’t have nightmares but because they degraded me, shamed me, made me cry, made me scream used my body like meat; then like day old meat, like week old meat. But the “I” inside never died; and though it hurts like hell, it isn’t going to die today either.) No pictures today, plenty of pictures in MY mind.
I am afraid that both I and my trusty computer went “BOOM” last night (my 'boom' as least was free...that time!). My computer blue screened anytime it went on the internet which indicates new motherboard, new harddrive, both, hard to say. I on the other hand felt an aura while doing the postcards for the new requests and only made it facedown to the floor before it started, at which point things get hazy because I had several, and sprained things like my neck and wrist and at the start of one felt myself losing fecal and urinary control but I guess the gift of retention is while you take 20 minutes to pee, you don’t always pee yourself! However a final seizure series later wiped out my speech center, or that what Linda says is her ability to understand me. I now have a little French, a little Spanish, and can say some words but it makes my head buzz and my vision go dark and often I can’t remember what I said. But living IN my head doesn’t hurt, so let’s go with that for a while, okay?
First off, I have been concentrating doing such a quality job with anime pictures because a) I have been getting anime art books when I can at 75% off, and a few from Japan directly now and then for about $20-28. And b) Because most of the time I look a wee crap, you know, face ashen, hunched over, etc, and I don’t want to bring down the tone of this blog. In fact I think the pictures give added value to the blog, while me looking like some pupae fresh from cocoon with slime trails is um, less fun to look at. In fact I use more foundation now and put it on every day because I was tired of the comments from the caregivers (“Oh you look so much worse!”, “Wow, you’re so pale!”; they must have a course on how to make the client feel comforted) . But here I am, looking not too bad. 
Some could say I am thinner (or that my head is smaller) but I prefer to view it as that my ears are simply doing a late growth spurt. That my two ears are about half the size of my head shows what a bang up growing job they are doing.
Second I guess is to try and tell you the conflicts in my feelings about being taken care of. This means I talk about an unmentionable: money. I get a biweekly allowance and spend it on gifts usually (and artbooks!) and am helped by Cheryl and a bit by Linda for buying postcards. One person mostly pays for postage but a few others have been helping out in that lately.
I bring that up because the finances of dying or rather having a prolonged and severe illness cannot be escaped by the one who is ill. Whether that is the Gatorade I have to drink ($1.25 a bottle on sale, 2-3 bottles a day), to the medications I take. And right now, because my current GP won’t move me into harder opiates I have to take 3-4 different painkillers, as will as 2-3 seizure meds, as well as pills for my immune system, for strokes, for my heart and others. Linda doesn’t tell me the cost but I know that just 1 pill I take 3 times daily cost Linda $1 per pill. I have recently had to increase most of the pain, seizure and heart pills by a factor of 2 or 3. When I see the minute pauses Linda has about choosing food, or the other signs of financial worry, it is hard NOT to want to delay in having pills. Who wants to go, “Oh well, you’ll just have to figure out how to pay this off when I’m dead – pass those high price pills!”
This, along with the absurd costs of everything disability related is why I am often overcome with the feeling of being an unbearable burden. So I frequently skip or refuse my pills. However, as within 24 hours I am usually screaming and being held down by a couple people or in a depressed heart and seizure cycle that leads to the hospital ($86 for the ambulance ride), in the end I take the pills. Until I forget I’ve done this “problem solved solution” before and try again.
Because as I grow weaker, as more systems fail, I become more and more dependant on others, which is Linda, a little bit on home care and those she hires.
Normally family would help out, however, my parents, after I talked with them over the phone and counselled them on how to ask their GP for tests and what medication to use now have a new lease on life; a dramatic life improvement. My mother finally agreed after I was exceedingly blunt to try the pill created for Fibro and now has a great quality of life; which she told me in a card with a $25 check (so I do phone consultations, for um, $25 I guess!). My father has heat related palsy and is more stubborn but has some better quality of life and has decided after reading carefully about the postcard project, that as an ex-minister, this is the sort of project of giving he supports, or so he told me in a letter which had $10 in it.
Why my parents mail me letters once a month or so when they live within sight of me, I cannot say. My father indicated that this $10 was half of his entire allowance (at which point I wrote to tell him that it is not 1970 and a grown man of 2007 can have more than $20 a week, and I returned the $10 – well if anyone told me they ONLY had $8 after their assistance check/cheque and were sending me $4 I would thank them but return it because $4 is not a large cushion of savings for someone with a disability – I pointed out to my father that these principles were taught to me by HIM, so sorry, and thank you for your concern but no thanks.)
I am sorry if that seemed to go nowhere but it does have a point. I have spent my life solving problems by getting jobs or overcoming adversity and at one point worked five jobs; I worked a full time job, then worked another 39 hours from Friday at 5 pm until 4 am on Monday and then worked the full time job as well as two night jobs. Now it seems due to government agreements that the contributions I made will help others not me. That I have indeed worked year round for over 20 years (I was one of the first to work at the ‘unage wage law’ of California), and have not yet been able to claim anything from unemployment to disability. 
But that was okay, because I had the degrees now and could get a university job, even if only research and have those benefits. Except that didn’t quite happen. And for a while I applied for jobs and worked in trade while in my wheelchair, but none of the jobs I did or things I wrote, including BBC ended up being paid. Nor really was I seeking that at the time (It would have been NICE!), I was trying to find a paying job in town but now that is far, far beyond me. Indeed so far beyond me, at times I wonder if people aren’t thinking when I say I am disabled, “Hey, I’m disabled, I have impairments, but YOU, like dude, whatever you are is SO FAR below me, that I wouldn’t call it Disabled; breathing maybe, but not disabled.”
Yes, so is someone who needs care for a majority of the day disabled? And when the main aspect of their care is to keep them alive, or minimize the damage to their body?
The other thing I have found with long term (or for those who consider 8 years or 10 years or more long-term; short to medium term care) care is that there is guilt and there is fear. I have guilt because I am watching Linda become tired, trying to work two jobs; one to keep insurance and progress her career, one as caregiver. I have guilt because the joys we had as Able bodied or even when I was a bit healthier are gone, which leaves Linda with the bulk of trying to go out, or do something together, or more often just sleeping or taking a hard needed rest of her own. I would change that, but I can’t. And as I change, more and more mentally and physically, my ability to do anything to assist her is curtailed. That is guilt.
The fear is knowing that while I am the person making her exhausted she is ONLY thing which is keeping me from NOT having the medication, to having to be tied to my bed in restraints while I scream and scream in pain. They don’t have a place for me at the hospital. I would be placed in the only space available, either a facility for the indigent, the homeless, a mental facility or a seniors home.
All would probably try to refuse me due to the level of medical treatment needed many times a day. The hospital would refuse me because their job is to stabilize people to get them OUT – to places elsewhere. So wherever I ended up, I would not be wanted, I would received a minimum of care and it would be an incredibly wretched existence which would dramatically shorten my life span, and I would be SO thankful of that. I want to believe it is still last year or the year before, that we have options, that we have stability, and I will be okay, but as I get worse, and worse and Beacon steps back going, “We don’t do medical” that fear grows.
The reason I talk about this is that we were going through a very bad financial patch for a while, which I don’t think I blogged about. I don’t remember what started it, probably some medical cost but I don’t know why because a) it is WAY outside my time frame to remember, no matter how emotional and b) because my recent round of seizures and perhaps a small brain bleed have made that impossible today and probably forever (Oh, when you can taste the blood in your mouth between seizures, that coppery taste in your nose and your tongue and the back of your throat and then you feel it starting again, it is like being alone at the bottom of a mine shaft, you know there is light up there, but are you ever going to see it?). Anyway, that period of crisis ended with a NEW crisis over two weeks which took several hours a day and several trips to the US because Bank of America made a mistake and then they made it several more times turning my account of $68 into -$335, not just once, but after working with them for several hours a day for a solid week, they did it all over again. And this is due to a ‘hidden’ $25 overdraft which IF USED, though you don’t know it exists, charges you with $35 for each use, and if you are like me, buying $6 and $8, and $13.99 online – well, even before you get to No Funds, there are some pretty huge charges. Plus it turns out that in Washington State when Bank of America took over SeaFirst, they never were able to integrate the two computer systems, which means, when you talk to the manager of a bank, or of the district says, “No worries, there are no charges coming in” that you can be hit that night with an NSF fee that has been on the OTHER computer system and lingered since last week but just now decided to hit your account (by the way, withdraws are done BEFORE deposits to ensure maximum fees). So I spent two entire days and many seizures trying to remove this “hidden” $25 overdraft that I had not asked for.
After many arguments with supervisors I ended up with the manager of the ENTIRE Bank of America Service Department at their center and we talk and talk about how the ‘system’ is supposed to be there for the people not the reverse and she goes, “Yes, this is getting ridiculous, let me just take that overdraft off.” A few minutes later she says in this voice of wonder, “I can’t, I, it is saying that I DON’T have enough authority?” She said that the Bank Manager would. Well, more trips on the ferry, more seizures, talking to the bank manager as it happened all again a few days later. And Linda had to keep changing money from US to Canadian and back again (which is a good way to make a large pile of money grow small as the bank takes 7% or so each direction). After 2.5 hours I got what she did not, a complete reimbursement of over $300……AND the email address of the guy who would like to “continue this great conversation some more!” (There are times to ‘come out and be proud!” and this wasn’t the time) It turns out no one in Bank of America can remove the $25 hidden overdraft, it is implanted in the computer code by Visa. (Visa not Vista – one is an evil empire, the other an evil operating system)
Soon after or during this Linda was first diagnosed with a disability/impairment, and had that confirmed by her doctor, who will be meeting with her ever few weeks to work on solving it. Meanwhile, I was broken from my “all is okay” bubble because I did not have an allowance the last period, nor all of the previous. Which is totally fair, but something Linda wanted to avoid me knowing because when I worry about money I do things (like call Bank of America for 7 straight hours), then I have seizures, and seizures, and depressed heat beats and breathing and then I try and do the same thing the next day. And she doesn’t like cleaning up the mess, besides seeing me in that kind of pain.
The money from the book faire, which I help price and select was a couple hundred and was to be a back up pot for postage and my time problems which CAN cause money problems (Linda explained that if I have $40 to spend in a week and I spend that, and then I have seizures or forget as it passes the two or three days that though I don’t remember spending it, that doesn’t make it ‘a new week’ even thought I THINK it is, so when I spend $40 over the NEXT few days=problem – this it seems has happened – we are working on how to fix it without making me terrified about money all the time).
But because of the last month we used the money instead for groceries, and medicine. I can’t really talk about Linda’s health and disability because her employers, who were discriminating against me through her are now just going after her (and read here to find stuff to use against her). And though they require you to get an ST02 form (which you have to pay $25 to be filled out from the doctor as it is three pages long instead of the notepad sick note) to get short term disability, they have required her to get that for a single day’s absence. Also, on the form, only the occupational nurse at the Public Sector Agency will know what is on the second form, which states the actual disability and medical issues (you are NOT required to tell that medical information to your supervisors or others due to medical confidentiality, the form simply informs them what accommodation needs to be made – in this case, half days for Linda). However, though the other half of the day is covered by STIIP, it only covers a portion (50-75%). Linda had given the note and it been accepted and thus acted upon, she was already working half days.
On Friday, Linda’s supervisor and the head of the government section approved a statement that Linda’ supervisor, though he/she did not have the medical details (as those are only available to Linda’s Doctor and PSA’s Occupational Nurse) did not feel that she had provided sufficient information and was retroactively withdrawing her STIIP benefits and pay (including the half days she/he had already accepted). Moreover, she/he stated that they had made the decision Linda does NOT have a disability and that Linda WILL show up for full time work Monday and here on or face consequences (By the way, Linda is a government MANAGER, not like, a store clerk or anything). It is winter for Linda right now, weather, health and workplace.
This not only counteracts the doctors’ direct instructions for Linda’s Health, the same doctor who wrote up the ST02 but also PSA who holds the notes and medical information. They have basically told a person in a wheelchair, “I think you are lying, so if you don’t walk up those stairs, you will be disciplined or fired.”
Friday was payday, which meant we made it out of the darkness. Well, except with her supervisor retroactively stripping her pay, and our computer dying we weren’t seeing lots of light. This is not a good time. While Linda gave me the choice to return to a ‘safe space’ after the bank of America issues, how can I literally lie there, knowing she is currently disabled and being persecuted? Except I have to, because I don’t have any options, but as least I can be here to support her emotionally. But, like so many others dependant, I look to my present and my future and I sometimes get terrified. 
They are of course, threatening her job because without the insurance, there is no way we could afford a week much less months of the cost of well….Me (or the costs of modern medicine). And there are no other current options in Victoria.
So that is where things are today. Because I have stamps I have been sent and postcards, I am doing postcards tonight. Because while things seem helpless financially, and I am helpless physically, I can still do things and try to make a difference. Plus Linda made me promise not to kill her supervisor. That doesn’t stop the guilt and emotional pain I feel, every time I am handed my BOWL of pills, looking down into what may be keeping me going, but at what cost to Linda? All the money for Seattle, and the concentrator that was donated, I asked Linda to return when I believed I was going to die like within a few days.
However, I am not dead. And Linda says the money for Seattle is still there, and when we get the final signature and some tests done, we are off. But right now, we have enough to get to Booth-Gardner, to get into see the doctors, and to have about 30 minutes of tests. I am on the waitlist for a brain MRI and a 40 minute EEG next week, if we take those down with us, the HARD data for them to look at, that saves us about $5,000 – tests which Blue Cross has specifically told us, “We WON’T cover you.”
I am sorry that I am talking about money which you are only supposed to talk about when you are making it or have a lot of it. Yeah, I know that I only remember one food, so I think we have been eating the same rice for a while. But Linda is still trying to be as chipper as she can, only our entertainment unit (Which was watching anime or DVD’s on our computer has now gone Kerplunk!”) is down and after that is paid for, I think I will see a lot more rice for a while. I write about this because if you have a long term disability, a severe one, money is an issue. And while Triumph might authorize things like $5000 for a wheelchair, or the Lion’s Club raises money for a racing chair, they don’t raise the money for the race entry fee, or the food to eat, or the drinks you need, or the medicine. And maybe that is why so many couples split up. I hope Linda gets better, and gets treatment, she seems to be getting it. In fact, my crap treatment and subsequent investigation into the neurologist resulted in my father getting royal treatment and immediate MRI’s from the same Neurologist the week after my complaint (odd that!). So, I hope I am by raising a ruckus providing better health care for many people!
Right now I am a wee pissed and frustrated. And yes, pissed not just at the actions of Linda’s employers of simply decreeing “You are NOT disabled, and if you act that way or expect us to follow this Doctor’s instruction, you will be disciplined and lose pay!” And yes, I expect that will play well in a human right court in a few years time, but doesn’t do much for the gas/petrol to get me to the EEG. This is about my parents. I have worried over my parents for years, decades because they had a knack for buying shares of companies about to go bankrupt, and had mortgages which were refinanced. I expected to pay of the rest of my student loans and then pay off my parents condo. However, an inheritance allowed them to move from the condo into a new $500,000 condo (split level; wheelchair inaccessible). And I was happy because I didn’t have to worry anymore. But then, due to various issue they have, I literally have had less contact with them in this last year than I have when I was in Wales (and less visits). And their view is that I got sick on my own, I will have to get better on my own. After all, they took care of their mother, they did ‘their bit.’ Well, I agree they did their bit. Of course, the selling of the mother’s contents to an auction house within 30 minutes of her death was a bit…um…different than I would have done things but okay. My parents took I believe 11 vacations last year. They have just gotten back from 11 days in Arizona, and are going on a Cruise to Hawaii later this year they say, but before that they will be going on another weeks’ vacation, and before Arizona was a week somewhere else that is beyond my memory.
Linda’s mother, who is the wife of a small beef rancher who I believe has had to declare bankruptcy, or the like, after a lifetime of farming (could be wrong), he is in his late 60’s and may still be working in livestock auctions where he has had MANY broken bones (he brings in the bulls, etc to the auction), she has offered to fly out and help take care of me. This is the same woman who would not actually look for more than a second if she could help it the last time we met (some years ago) and still won’t tell people who her daughter is with. Linda’s mother was just in the hospital with heart problems and after two weeks off after a procedure/operation has returned to the care giving work (she is approaching 60 or just past) which keeps her family afloat. She has offered to fly out, putting her family in debt, to take care of me, who she is socially still ashamed of.
Like me or hate me, I am family.
My family, half a mile away WILL be floating off on their $3000 round trip cruise. I hope my father who gave me “half” of his funds will use that $10 I gave him back wisely. It is difficult in times like this, not to make comparisons. Particularly as my parents did not keep thanksgiving with us this year, though they did last year ($5.99 special at a Diner). There is no Xmas or Hanukah for Linda and I from them (though there IS for my brother?) and for my parents, though they KNEW there was a great possibility that this was my last birthday, had SOLD my birthday. See, those pictures of me in the graveyard with Cheryl and Maggie and Linda in the video on an earlier post was my birthday because my parents had sold that day, it didn’t exist to them.
When we went to Japan, they gave me a small gift of money to spend in Japan. Well, for them, that meant, they had given money with no obligation, which is well, impossible. So inside they simply wrote, “This is in Lieu of your Birthday” – which I thought was a joke. But no, to them, I have no birthday, not that they gave me anything for the first 30+ years anyway (I am trying to remember the logic which I think was that since Herod’s daughter got the head of John for a birthday present they were evil).
I could forgive them for treating me this way, but not for treating Linda this way. When Linda’s mother will fly out at great cost, but my parents won’t learn how to turn on my oxygen after 18 months just so that it is not safe to be with them, or if somehow I am they wouldn’t have to, you know, CARE for me. I don’t want to be a burden (My father said that often: “Don’t be a burden”). I have never wanted to be a burden on anyone. But I AM a burden on Linda, and I see the effects it has on her. I AM a burden on Cheryl, and it has effects on her too. And Linda’s family is willing to accept a burden of taking care of me. My own parents, or sibling, or relatives, are not. They are Christian so I guess I Tim 5:8 is where they stand (which is kind of insulting to non-Christians but I guess Christians can be at times).
Anyway, that is where things are, and that is why I haven’t been getting as much done, because I spent 5-8 hours a day trying to help Linda with her, um work issues and then a couple hours having health issues (due to the helping and emotional toil) and when I am awake only 12 hours a day, well that sort of does it. I know that Linda wants to give you a blog to update people on the medical stuff, which I am not really privy too.
I simply can not lie by, though I may have to, while people hurt Linda or while books can be sorted and priced, so I am willing to bear the costs I can, which are physical (Seizures, blood, blah, blah, blah). It sucks, but then, it probably reflects how a lot of people have life and decisions that suck when it comes to long term care. Which makes this post and topic a disability issue.
The good news is that with our giant clunky oxygen concentrator on so much we don’t need to pay for the clothes to dry, we just hang them around the concentrator (I’m serious, it saves us like $5 a week!). We don’t have to pay for heat either, but Linda tells me that is free so our clunky steam-punk concentrator isn’t helping us there, darn. Hang on for another day or TWO (computer not coming back today, is sick bad). I hope that my computer will return to me soon and I will be back to at least that stability in life.
Today Cheryl took me to the store in Port Angeles that sells Hello Kitty items. In a true adaptation to US culture I found there a Hello Kitty Slot machine for small children where they learn how to play slots and when they win they get candy; sort of an essential skill for that pre-school set. I found a sweet (as in rockin') night shirt which had Pirate Hello Kitty on her own ship but the tops were in small (told Linda, “We’ll just wait a month.” I am a medium/large juniors now).
I was looking over other Hello Kitty swag when I saw a 6 foot tall blonde girl wearing some goth NYC gear with some male in tow (I couldn’t see his face). She said to world at large that she was “Too old for Hello Kitty!” and how “I shouldn’t love Hello Kitty so much, I’m supposed to be adult and all.” I looked at her and she had that age bending thing which put her probably in college somewhere (19? 22?).
I told her, “Nonsense, Hello Kitty is VERY subversive.” She gave me her full attention. I reassured her, “In Japan Hello Kitty can be very adult, in fact there are Hello Kitty rooms in Love Hotels. You know about those?” She nodded. The male behind her was slouching in that, “Oh God, how incredibly boring, here I am stuck in the pink Hello Kitty shopping land" way, which made me think “boyfriend.” So I continued, “For example,” I lowered my voice, “In Osaka, Japan there is a Love Hotel Hello Kitty Room full of sweetness, but it is also an S&M room. It is VERY popular with females who take their boyfriends there and with the Hello Kitty bedspread, sheets and decorations and tie them down in the room of overwhelming sweetness.”
“That is SO awesome!” leggy blonde says and nudges the guy, “I’ve got to do that to you! Tie you down in a Hello Kitty room.”
The guy says dryly, “I think that might be excessive cruelty to fathers.”
FATHER? I roll around and see this guy who is clearly thin and wirey from hiking but yeah, late forties plus. Oh God, I am going to HELL. Of not lynched.
I keep talking with her and we compare shirts, she likes my goth Trick Fairy shirt and I like her goth Tripp NYC top. I start telling her about Westlake Center in Seattle and the stores Tall Girl and Hot Topic and how they are right next to each other. She goes to DADDY, “Oh we totally have to go!” And when I mentioned some of the corsets she was like, “I have to add that on my back to school list!” (Her father goes, “That keeps getting longer and longer.”)
BACK TO SCHOOL? She could mean college right, or like 12th grade? Well at least until I told her about the Hello Kitty Toaster which actually burns the face of Hello Kitty into your toast (at the front of the store). She squealed and said, “I just don’t know, now that I am 16 is it wrong for me to LOVE Hello Kitty so much?”
“No, not at all!” and excused myself to roll over to Cheryl and said, “Next TIME, can you please STOP me from opening a conversation with a 16 year old about S&M Hello Kitty Love Hotel Rooms with suggestions to tie down her FATHER.”
Cheryl just laughed and said, “Is this like when you taught that kid the word ‘masturbation’ by accident…should we be expecting some divine retribution anytime soon?”
She didn’t seem to understand the gravity of the situation, “That....or the police?” But somehow that just gave me cred with the blonde. Cheryl assured me that there were very few 16 year olds who did not know about S&M.
“I didn’t!” I said back in the car, “When I came into ‘the world’ at college there were all SORTS of letters I knew nothing about and understood even less.”
“That doesn’t surprise me,” Cheryl said (Cheryl maintains that despite all my efforts I am not even a junior pervert, just a ‘lesbian innocent’ and that I have a LONG way to go to reach the level of ‘Pervert’ which oddly Cheryl seems to be expert in judging). I guess she knows since she had a male ‘associate’ who used to spend his time at work, not just using the internet but spending time at hard core porn sites. And worse yet, used to keep all the links to said porn sites on his work computer desktop.
I was like, “Come on, I’ve known a few male eternal virgins (those who tend to do a LOT of porn surfing), I’ve been shown some porn sites.”
I was told that this guy had PORN with a capital “P” as in the ‘mildest’ image was one involving females and....um…animal cruelty? Mildest? Thank God he didn’t use THOSE as his screen saver. I do however stay up late at night sometimes asking myself the question “Mildest?” I had though myself a hard core perv as I could get the references jokes about women and ping pong balls, women and various vegetables but I just don't know for the life of me where could one go DOWN from…um….animal cruelty. And the way it was indicated was that there was a vast universe of DOWN, DOWN, DOWN into Pervert Land on this guy’s WORK computer. So, okay, I grant Cheryl the power to name the pervert and while she might think it is funny that I start giving out info on Hello Kitty S&M Love Rooms to 16 year olds and their FATHER, I am still sure that is lynching talk in many places. (Ahhhhhh, going to hell, going to hell!)
So now I have acquired a new phobia. One which will not stop me from talking the dirty about Hello Kitty (yet!), just VERY glad I did not mention the vibrators and now next time and EVERY time I need to make sure that male figure IS a boyfriend (Is my fault that I tend to focus on the female and the guy is just a blurry blob?)
Last night Cheryl, Linda and I were sitting around talking about fears. Cheryl used to do cave tours as part of her job as a Ranger and talked about learning to spot the people who were claustrophobic right off. And she said how some young kids you can talk out of their fears (like a fear that bears will attack them in the caves – point out that bears don’t have thumbs to get through the security doors) but some fears you can’t.
I said, well, I don’t think you ever could have talked me into how wonderful it was as a kid to have to go down to the cellar/basement where the sump pump was and get something for my parents. First off, why DO cellars have those steps with no backs, besides so that the monsters can reach in and trip you as you are going down? Also, it didn’t take the film Arachnophobia to tell me that there are spiders in the basement/cellar, of COURSE there are spiders there. And that is one thing I am afraid of, spiders. Indeed after going to bed last night, I saw a little creepy crawly on the wall and hooted out the alert, “Spider! Spider! Spider!” while Linda got some toilet paper and found it where it had crawled behind some clothes and killed it. There is no mercy for spiders I see because Linda would rather kill a spider than have to stay up for four hours listening to me go, “Is that IT? I know it is going to sneak around on my pillow!”
And despite how Linda tries to convince me that spiders do NOT actually seek human blood, I DO know that they tend to make humans their highway and if you move they bite. I know for certain because I had a friend (obviously a male friend) who would wake up in the fall with several spider bites on him. Why? Because he lived in a basement which had drywall but lots of cracks, so as the weather changed and the Spiders came inside, they used him as a highway from the closed off (and dark and dank portion) of the basement and his tiny one bedroom (why a male friend? Because do you know many females who wake up with many spider bites on them every night and then laugh it off?). I think he invited me over to watch me squirm and scream as the spiders came though pretty much all the time. As for me, I couldn’t sleep knowing that spiders were on the other side of the wall IN THE DARK doing evil spidery things (like breeding).
Then there is the whole, monsters in the dark. See, even as a child, I KNEW that having a blanket over my head would not stop the axe killer/monsters. It is just I did not PREFER to see my own death coming. I knew the blanket would stop the claws and such BUT since the LAST time I heard the monster creaking in the dark, and I put the blanket over my head and managed to sleep, I felt I should go with a winning formula. Also I had a night light, well to be truthful I had THREE nightlights (right now I have just one! So see, I’m getting better.)
For Linda she has a fear of snakes, and she says while she ‘knows’ it is not a dangerous snake she can’t help but jump and shriek. She also has one for mice, though she claims she just, “Don’t like them.” Errr, yeah, doesn’t like them so much she has to go to the other room while I trap or lay a trap for them and then peel off dead mouse (oh the things we do for love).
Cheryl says she has a phobia for scorpions, which to me doesn’t seem so much a phobia as common sense. Particularly as she woke up in Death Valley with THREE of them crawling on her. I remember in Malaysia visiting a scorpion pit (it was on the tour!) and I can’t say I was about to go within 10 feet of the pit (hey, maybe they can jump).
Cheryl and I are both scared of hieghts, but only the heights where you can LOOK DOWN. See, being up on a ridge, not a problem, having a hotel room overlooking the city, not a problem. But take me on a railroad trestle where I used to have to walk while looking DOWN at the ground a hundred feet or more below. And I was clammy, my limbs rigid. That didn’t stop me from walking DOWN from the observation deck of the Eiffel Tower where I have to walk down looking down through the iron gridwork stairs and keep staying, “Try not to think about how these stairs are over a hundred year old!” Other people I know freak at the top of Ferris Wheel, which bothers me not at all (because I have something to HOLD and not looking straight down, feet firmly on…um tin metal).
You all know about my needle phobia. But let me delve into my odd fears. But first Linda.
Linda says I can say that she used to have a very strong/overwhelming fear of FAILING. In fact, she would avoid trying or doing anything that could possibly result in her failing. But she has worked hard, taken a couple public speakign classes and now is sort of known as the go-to girl for learning new things. But it seems a lot of people are afraid of this. After I with her for a while, and we were a couple, I asked her to do what I tended to do every few years, which was to put down a sheet of “five year goals.” Just doing a fantasy thing of what you might WANT to do, but have never pushed yourself to do, like “Learn to sail” or “Take a Cruise.” Linda wouldn’t put down anything. When I asked her what was going on, she burst into tears. I didn’t understand at the time how hard it was for her to put down a list of things that she might have to try, because then she might FAIL. With some hugging and talking she finally wrote the list. After getting back from the UK, she found the list again and almost everything on the list she had done. Go Linda. Maybe time for a new list?
As for me, when I was doing my therapy for rape, I wasn’t just having nightmares every night, I was also extremely afraid of men who approached me on the sidewalk, their eyes moving to me, watching me turned me to a jelly of fear inside. A few guys picked up on this and used to call out things, acting if I was their specially owned pet, “I haven’t seen that on you baby, you got to come show me later.” This created in me a fear, not of men but of being in a place where men could do or say what they wanted; which seem to be both public and private places from streets to restaurants. It got so bad that with the exception of a few blocks I was housebound, due to this fear. I wanted to carry a knife, but EVERYONE including Linda stopped that because it was so obvious that I was so terrified (and full of rape/abuse triggers) that I would probably use it. It took some therapy, and some sports to give me back enough confidence to be able to walk by myself again, to have a man ask directions or want to stop and talk and not have a visible quiver of fear. These days, when I am far more vulnerable, I have no fear at all, that, thankfully but sadly, is one fear that is so common, we as society have learned the skills needed to help people overcome it.
As for spiders, “I spy, you die!” Guess I haven’t come to co-exist with them yet.
Anyway, that's me, and Linda, we shared, you share - so dish, believe me, I won't laugh (public speaking for example is a common fear - being attacked by armadillos..um...less common).
