Survival (version 2 with editoral notes)

Those around me know without saying it; because that’s the rule, you never say it. Dying. When you are there and I am dying and soon, that night when the fever keeps up and the pain doesn’t go. Those are the nights the body is shaking, and burning, and the heart is crushed and the body shudders when it spasms. Then the lungs need to have someone breath for them as they lay down, for a few minutes; for longer, and longer, it goes on and on. On those nights no one talks about ‘how long’ or doctors or hospitals, and sometimes they leave the room as they can, not watching anymore. Then a corner turns and while I’m as weak as a kitten, it might not be this time, it doesn’t feel like it anymore. So no one talks about dying. Because that cloud has passed…for now.

And so no one ever talks about it. Which means that everything is supposed to be the same day to day. But it isn't. I am lucky if it is the same for six hours.

And for me? When things are bad, it is like trying to live in a burning house; this isn’t a place anyone would want to be. When the body starts failing and rejecting the most basic functions, the physical cost is more than one would think consciousness could accept. The oft prayer: “Oh God, please, please let me pass out, let me go, out, away, I don’t care, but I can’t do this anymore.”

Except somewhere inside the need to keep going is something hold to. ‘Just a bit longer and we’ll sleep and sleep...’ the promise is repeated through the dozens of minutes until the hours pass. When I finally sleep and wake, fever free, but to weak to move, all I want to do is be up. I’m going to live, at least a while longer, and there is so much to do. (Which is why I can never seem to get to bed on time, that and the frontal lobe thing means I have very low will power at the end of the day)

“Pain pills” they say.

“I can’t move my hands, my arms.” Fingers push the pills and the water nozzle into the mouth.

Later you beg, “Please, pain pills.”

Silence.

‘PLEASE.” It is hard to make it sound like a request, and not like a prolonged whimper.

I do not envy Linda as she bears the bad news, and so more silence before, “can't have any more for three hours.”

I make the sound that is half hiccup and half sob. There is me, and the pain and I moan, sometimes I wake myself up with moans. “Anything, please..” I know I sound like a junkie, or a beggar and I don’t care. How can I care what happens outside my skin when it is like this inside it.

And when I can breath okay, and Linda, a week of working done, helps me get chores done. I find out what I’ve missed. I lost a weekend entirely. So no postcards out, but I didn’t receive any mail either. Well, that is what it is. I think of the dozens of people I spent working through the night to make postcards, and cards and package gifts, so that they know I was their friend, as much as that can be without skin contact. And if 90% of those individuals are gone, I miss them. I miss them but I hope they are happy, because oft they didn’t seem so happy the last few times they emailed. I carried as much as I could for them, perhaps it wasn’t enough, or perhaps I wasn’t giving what they wanted. But now I am failing true friends, those who have been there during the bad and worse times. These are the ones I very much want to send a card, a postcard, an email. Forgive my failure . (Looks like a Pity Party to me. I can't tell which bummed me out more, getting no post or being so ill that I haven't been able to get out any postcards or worse, four cards for gifts already picked and waiting, not in two weeks - that would be lax, except it isn't, as just being up to talk sometimes is pushing my health. But the rest, yeah, it is a Pity Party. Oh well, I guess we all have them now and then)

I am so ill I only have the computer on every few days. Often I am in so much pain that I don’t want to write anything in case it comes out full of that pain or angry. (But I got tired and frustrated and that came out too. I think people who twitter or tweet or whatever takes even less time cannot imagine not turning on the computer or checking email for days but it happens, and the more ill I am, the more it happens.)

I can pretend I don't get angry, but I do, though not at Linda so much, still at myself though. But while I get weary at the 'trench work' (the digging and filling trenches which is the chore of staying alive), I don't get angry. On Monday this week, the first day I can sit up, after doctor appointment and four others, I somehow change and am up at the Y doing the boxing workout, harder and harder until I sweat and sweat….I can’t risk not sweating enough. And I think, “52 more times and I might survive a year.” By the time I lay down for the nap afterward the pain in the spine is so bad that I can’t stop moaning, and screaming at times. This is the choice I made in order to live. How can I be angry at that? (Pretty easy. I have to do all this horrid stuff. The director of the Y told me he doesn't do the amount of push-ups I do, nor could he. I do them, or I die, yet I still am viewed as a fat lardy)

I get angry though at those who depend on my sense of honor, trust and word to remain after they break their own. I do not like the computer some days, when this is all it brings me: a world filled with half lived lives. It isn’t the money they make, though struggling from grocery bill to grocery bill it hurts when my parents write Linda (cause she’s ‘nice’) to tell her about the new Wii, and computer and netflix subscription and the two week vacation and how they will be back the day before my birthday. It is that they know I have protected their names, identity, addresses even as they use the blog. It is perfect for control freaks: think you know and judge the other person without ever having to open yourself up. (This is the frustration of a few things or incidents which keep occuring, often never mentioned on the blog, so why do I guilt everyone out? Why can't I be open enough myself to say that I get hurt often, sometimes daily by the insensitivity to some people in regards to my disease, my limitations, but also in expecting me to be the same person I was several years ago. For example, if you email me at 4:00 pm, and I don't email you back by 8:00 pm, I have not 'abandoned' you, nor have I 'rejected', or 'spurned' you. Just stuff like that, which hurts because I end up feeling that I have, that I AM a bad person, only, I was sleeping or ill in bed so later, when I read the emails, THEN I am a bad person)

Risk nothing: that is a half lived life. Or use me as a sealed confessor, then speak or comment in ways opposite to that. Masks are a half lived life: if you spend eight hours a day in a mask, it is half of your life. (I think I would amend that to say that Masks can be a survival tool for a time, but also a safety net which can turn into a silken trap where they are worn for a life, or interchanged so often that will the REAL....whomever please show themselves. I we had known how hard it was, would we have come out of the closet? Thankfully we didn't, as I know we never would have grown. The same true for disability - I ignored those with disabilities because my own were ignored, and I wanted to please the people who did that more than I wanted to accept that as part of my identity and learn about it. That was a bad decision, and one which went on far, far, too long)

Soon there is a birthday, my first. I have had no birthdays because my father decided it was ‘vanity’. And if I got presents or even money from my grandmother or my grandfather, he stood over my while I wrote a note tell them no thank you and he took away and sealed it and gave it to my mother to mail. I have yet no party, as I don't know if I am supposed to plan this or others, but should they come? Let's vote. I don't know what else to do. The last time I had written communication was during one of my parents two month vacations last year (no, not the two cruises back to back, no, not the one in Arizona, the OTHER one) saying that the promise they made some years ago to cover a medical expense, well, some of their US investments weren’t doing that well so I was a luxury they couldn’t afford anymore. I don't know what to write back. But I think they would be a party buzzkill (or a curious attraction?). (Okay, Pity Party Number 2 - Wake up Beth! You essentially have no family, or certainly not one that wants to care about you. The quicker you accept it, the less they will be able to jerk you around. And giving them 'new chances' every two months doesn't help. After all those new chances, they can ask for one if they want one, they are not shy is demanding the other things they want from you.)

So, surviving, or not, at times.

I made it out to vote Nationally. We had an election in Canada...so, nothing changed. I wasn’t registered, but had the documentation. Now I am registered for home visit voting (“though there is federal, provincial and municipal and they each have their own requirements” I was warned. I gave them a look and said, “of COURSE, I am in Canada, right?” Which means if there is a 'back asswards' way of tripling the energy for those who are disabled or elderly, it will exist.)

See, when I have a day when I have two spoons (instead of the 200 most people have in a day) and go to vote and end up being okayed to go vote at booth 184 and then the person at 184 tells me that they don’t care who said what but they weren’t going to let me vote and what was my name again. No, no, I need to start at the beginning and go to the START of registration line (they ignored me asking, ‘Where IS the registration line?’). And the registration line wants to know why this wasn’t taken care of when I showed up by the first person. And more paperwork, and more documents and then back to 184 where my documents are very thoroughly checked. How many spoons is that?

With so little energy, why would I waste anymore on anger? Because I have asked 10 Canadians, all managers what they thought the unemployment rate for Canadians in wheelchairs was. Not one guessed lower than 70%, several guessed it at 90%. When I told them of integration on the trip to Sakura-con and how the person who parked us on the Washington ferry was Deaf, they just stare at me with a ‘Is that legal, shouldn’t someone go and stop them?’ look. I realize then how small we have allowed our minds to be, through a collective bigotry we would rather laugh awkwardly about than change.

When the same person who guessed 90% unemployments then says they are shocked, I ask how they feel about racist jokes, about sexist jokes, and if they have EVER seen someone say to someone telling a person in a wheelchair NOT to do something or pushing an elderly person aside, or saying or hearing someone say, ‘God, if I was like that, Shoot Me!’, and EVER seen or heard anyone do ANYTHING, EVER not just now, but their WHOLE LIFE? So far I haven’t had anyone who has heard someone say: “No.”, "That's offensive", "That's not appropriate."

I have lived a life, working from tween years, for 20 years as a servant. I have tried to serve so that the person being helped didn’t realize why this day, this week, this year was better. Part of that is listening to people, finding out what matters to them, what is important, and what they like: to find out who they are and who they want to be. People send me postcards as gifts. Except that Postcards are my JOB. So that is like me sending people pencils or shoe laces. Because they use them right? And I use postcards.

Sometimes, people ‘get’ it, and the postcards they send for the postcard project, not to me, but to the project, are ‘right’, they are a paper or style not available anywhere else. I got a gift of postcards that are going to make at least 50 children happy. That will make Linda, Cheryl and I happy. (Some people send postcards and don't specially say they are for the project but I assume that. But they also have a relationship with ME.)

Someone came and visited me as I was. “Where you are, there shall I be.” They didn’t have to say they loved me because how they treated me, how they understood without having to be told, how they rested my head told me everything.

I needed socks and there were socks. (I am giving examples of things which happened recently of things which stay in my mind, which has a short and small memory, that say, 'I hear you. And that matters.' I am certain this has happened many times, many, many times over the years. Sometimes though, people will drop off the radar, and that is kinda sad. It is like a friend who won't talk to you and won't see you - that's the limitation of internet friendships)

I am not angry at whoever is reading this, I am sharing with you what it is like when consciously having to grit my teeth to take the pain of lifting my lungs so I can breathe is a day when no one talks of dying because I can do it, and I might be able to do it for months. (or not)

I’m not angry because while I might miss you, if you used to comment or sent back postcards, or post, after two weeks with no letters, in fact, no mail at all last week – so no Easter messages at all. It is not the best reflection of humans. (Sheesh, get over it Elizabeth! Mail is delayed, stuff happens. This is the problem of writing blogs combined with the emotional and mental decay - sometimes the adult writes the blog, sometimes the pouting 8 year old does. Though I think for all of us, a pouty 8 year old is not far beneath the surface on at least a few subjects, this it seems is one of mine)

I spent 20 years, silently making sure you were okay. (not eloquent) I spent 30 plus years being the obedient child, the sibling who wanted only reciprocal love and if I was thought of at all, it was how great it was that I kept doing all that I did. And after I ill, I tried, in many ways to be there. Really, I did. (I think there is a frustration that people assume that well, of COURSE, Elizabeth would push through and push on. And perhaps the guilt of not being able to put up photos of Sakura-con quickly is in there, only because it seemed several didn't want the pictures, they wanted more or different pictures. So the one nice time away became something I felt I couldn't talk about or show without criticism. And then there is the challenge of saying how I feel when often I find criticism painful. And even more because I share pretty bluntly and openly, but those who find problems are not coming out with examples from their own lives, just finding fault with how I am living or expressing mine. But then, if I want people to read with interest, I should be an interesting writer. I don't know how much a palliative and brain damaged writer CAN be a 'objective professional' - should they whole 'anything goes' idea of critical response be applied to someone who has brain damage, or who has such a limited scope of life view? It is an interesting question).

And now, I am several months PAST where people disappear from the public's view, long past any 'last lecture' or where they are told to spend some time with family before it is ‘too late’. Some people don’t get how I can do things, still go to the Y, ask how I am, and when I say I am palliative, they get all puzzled, or frustrated or angry because how can I be there? Except those who know me, who see me and who either don’t talk about it, or say, ‘Today, you’re looking better.’

So, I am going to take some time, of the time I have left and be selfish. Which is why I guess talking to the four adults sending me in a round robin to get to vote gets me upset.

For those who wonder: those actions you take, the letters you write to me, to anyone who is ill, the drawings you send, the parts of yourself and the listening you give to those who are ill, and the emails, they are ALL appreciated. And when you don’t hear anything back, then listen to me now becuase here is your 'thank you', because the ones where you don’t hear anything back are often the most valuable. If you knew how precious you might be ashamed. I know I was when someone’s widow would say, “Elizabeth? Elizabeth McClung? I know you.”

“No, I don’t think so.”

“Yes, you wrote a letter. He kept it with him, even at the hospital he kept it with him.”

And I think of something that I wrote, finishing early so I could go off to do ‘something fun’ and all I can feel is the overwhelming feeling of shame. It could have been so much more, it SHOULD have been so much more. “I’m glad he liked it.” I say and try to escape since my earnest desire to burn a hole through the floor has failed.

Paula asked me in the comments ‘What do you want for your birthday’ and I thought, “I guess I am supposed to say, ‘Peace on earth’, or is that just for beauty contests?” It is my first birthday after all. I don’t know what I am supposed to do or want. Things are actually starting to look a little better for our life, and I know how many people in Japan and elsewhere have needs. I am saving for a piece of art which I don’t know if I can show since without much of a frontal lobe delay I am more vulnerable to being laughed at (oh, I checked, I can't reproduce without permission and I don't have it yet).

DVD sets of TV series or seasons are coming soon, so probably Amazon.co.uk gift certificates (they are REMAKING the series, The Killing, the amazing hit show from Denmark so it is set in Seattle with American Actors! This however was nothing as strange as finding parts of ‘Little Britain’ REMADE with American Actors for the American ‘Little Britain’ – changing the settings, the backstory, the situations, the character and then the complaint is, “I don’t get this British Humor.” – British Humor? What possible UK aspect is left?) and Amazon.com certificates are a good gift as Linda and I are watching Burn Notice as and when we can (apparently for the second time – a plus side effect of temporal lobe damage), we are half done season 3, so the new one is up next. We don’t want Dexter or Chuck. But I am looking forward to some TV with ZIP, with something as I am pretty much out of things to watch when the pain is bad. And lately it has been bad (they upped my pain meds before the Sakura-con trip then another 75% up after the trip along with a doubling of the breakthrough medicine). That takes care of 50% or so, sometimes 30-40% of my pain. I dreamt this evening that I was having my thumb severed from my body, and waking up to find it was still attached, and that I haven’t had to snap a dislocated jaw back in wasn’t even relief, it was just facts.

As the LCN said after seeing the burns on my body from the patches, which burn through the skin down to membrane, and what it was in Feb and is now he made a face that was like he was going to gag up his lunch. “That’s insane!” I totally agreed with him. However I don't think sanity isn't the best way to deal with where I am right now. It is survival, and if I can keep doing it, then I live. And living to me is better than the alternative, and the phrase ‘hopefully a better quality of life’ gets a ‘Hell Ya!’ out of me (at least mentally on the bad days). Oh, stuff on wish list is good too, I think, or if you know me, you listen to me, then your mind is far more than mine can clever be.

The DVD sets I hope for include:
The Inside Complete Series (not out – is there a way to get episodes? The women who wrote first season of DollHouse did this)
Royal Pains Season 2 (May 17th - $27 on Amazon)
The Killing (from Amazon.co.uk – Danish Version)
Waking The Dead Season 9 (From Amazon UK – out now)
Dark Skies (is this good? It is from the 1990’s, I think)
Stargate Universe season 2 (May 31)
Burn Notice 4 (June 4th)
White Collar season 2 (June 7th)
Rookie Blue (May 31st – is this good?)
Swedish Fish (now – they really are fish, just gummie and yummie)
George Gently Season 3

DVD sets I don’t have a clue about: Nikita (didn’t this get done already? Twice?), Haven Season 1, Glades Season 1, Covert Affairs Season 1, Rizzoli and Isles (this looks interesting!)

DVD sets to which I say, ‘thanks but no thanks’: The Big C (Will they whore terminal diseases – don’t they always? “We don't see the fear, the depression, the disbelief, nor are we let in on the details of her diagnosis or her treatment options, all the minutiae that terminal patients face.”), Supernatural season 6 (Once we have the ‘quest for God’ or ‘Quest for Devil’ I watch season 2 again and enjoy the TV movie of the week), Chuck (I liked him as a nerd, with nerd friends, we both ditched the last season), Glee season anything (I tried but could only watch 1 episode at a time, the lying by the characters was that bad – I don’t like lying and I sort of hated everyone by episode 8 – my 4th try at watching season 1). Mad Men season any (the longing of men for the ‘good ole days’ of doing bad things, drinking, smoking, littering and treating women like pets’)

Back to getting to sleep on time, getting up, and getting the things done that need getting done. I do hope to have energy for sorting photos soon. I want to share more of my life with you. And I will keep trying.

For K, for M, for V, for J, and Linda and all my friends because Cancer gives equal opportunity, Laura is doing the 60 km walk to fundraise for specific items like two mobile mammogram machines (10% of those with Breast Cancer are men – one man family knows had his ribs removed and a kevlar mesh to keep his insides..inside), and financial assistance for families. Her descriptions are honest and real. It isn’t just the cancer, but the treatment, the surgeries, the unknown complications, the tests which hound you with terror. Having had my gums recede the last few weeks and a tooth loosen due to jaw clamping in sleep, I could relate and wish this on absolutely no one: “She was in so much pain that she clenched her teeth so hard that she cracked two of them and now has to go in for crowns.”…” losing so much weight the little fat pads in her feet disappeared so it hurt to walk, her bones poking out and her clothes hanging off her because it hurts too much to eat and what she does manage to eat she can't keep down.” The link to her fundraising page is here.

The big C means more to me now, inside the system. My GP is a terminal C doctor, my hospital treatment, my prognosis, my developments what they can guess or figure out is because of those who have had lung cancer, heart cancer or other cancers which at the end affect autonomic failure. The way pain is understood at this level and the kind of pain treatment I get is thanks to the tens to hundreds of thousands who died from Cancer. The way hospice, respite and care palliative home care will occur is thanks to the voices and advocating of those with Cancer and the families. I wheel on the bones of the bodies who have gone before me.

Thanks is inadequate but a place to start. I will think if there is some focused fundraising I can do, a sort of 25% of sales of items doe Laura’s walk. I am open to ideas.

For those who are hanging in there: I get out of bed every day. And every day that is an act of will. Like so much. I say that because I know that can be true for so many lives. This is the price we pay so we may experience the unknowns of tomorrow: having things like a loved one braid your hair, or sharing a song.

Is it ‘Pain’ or is it ‘Just fussing’?

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.

No food, low on medicine, high on shame and pain, but by caring, we fly, we fight.

This is for those who know what living past the edge is. I will always fight, for me, and for you. Do not give up, do not give in: when they say it is impossible, then drag yourself. And crawl when you can, because to anyone who has had the expectations of failure and defeat piled on you, and kept trying, then you are flying. For each and every person who has experienced the pain of being treated like your illness, your disability is your fault, whether that is through accessibility denial, doctor abuse, relative or friends turning away, and you go on anyway, trying even while it stings inside, then you are flying. We will always be afraid, because true courage is not knowing the outcome and trying anyway, particularly risking for a better life: for you, for those you love, for laughter in your life, for just a smile.

Please watch this AMV of Nausicaa: valley of the wind, a Miyazaki and Ghibli Films anime more than 25 years ahead of social awareness, and so,one of the last films of Miyazaki accessible in translation/subtitles (what was released in the US earlier was a heavily edited, cut and ‘kiddie’ version while Poland banned it entirely). Nausciaa lives in a post-ecological disaster world where insects, and toxic forests are dominant and deadly to humans, having grown very large. In the small cracks Humans go on, but Nausciaa’s small valley is threatened with two groups of humans hungry for power, using technology and the abduction of the child of the insects in order to destroy the forest and 'reclaim' power. Having grown up wandering the toxic forest she knows what other those individuals behind walls have forgotten, that the reason the only unpolluted water is in wells is because the forest is cleaning the water, and the planet. She will never stop fighting to stop the exploitation, fear and misunderstanding of this one stereotyped part of the larger connection to a renewed world (kind of like us isn'tit: those with visable and invisible illnesses and disabilities and those with them that we love). Nausciaa puts herself on the line to calm a hurt insect child (red to blue) and try to communicate to the insect and human adults to please, not let anger or others' drives get in the way of the sacredness of life and the most important of things worth fighting for: caring.


My computer is down, and has been last several days for all but 8 hours (so I blogged). Only part of a complex saga in which each few days we have less. A week ago we had $4 for food, and so, with Canadian Thanksgiving coming up, we won’t have one, or the food for one. As different pills run out each few days, without the money to refill them, including even the inexpensive ‘pill’ used for my hormone deficiency, I simply get sicker. We are paying for our computer to be fixed with rice crispy squares and gifts – I am not kidding. We have tried to get emergency money but the promise of help has not come (my parents were/are unreachable on a cruise still). People have been kind, understanding though it must hurt Linda to have to explain how she was made redundant, and basically beg. But she doesn’t give up, and I don’t either. I don’t ‘tweet’, I don’t ‘twitter’, and I don’t really do facebook. Please pass the word if you can that I am here, and I am posting on living, on gender issues, on disability issues, on feminist issues.

I write blog posts because at any time, a seizure can wipe my brain, or like yesterday when an explosion of blood came out of my anus, bright red, with cramps, and feces, it takes the time and strength I have. I fight to be up, and upright. No, no idea why, it isn’t like I have a doctor, or any medical that care. I haven’t been touched with care, talked to be a person who realizes that my medication is only taking away 40-60% of my pain, or that dying is a messy, and painful time, one of soul stripping. I have not had concern in a conversation or the simple touch on the arm, the hand to hold that can mean so much, not for weeks, or months.

But I fight, because this is the one life I have (and incidentally, the one life YOU have). And I will blog more and more often, my flag, and banner of resistance. Though commenting on blogger/google is a pain in the ass (ow, ow, ow! After last night/this morning how about we say, 'a real vexation!' ha ha) I hope you do comment (I keep anon signed comments open even though I get hit with Anon spam 15 times a day). But more, I hope you can watch that video and realize that you do matter in the large and small scheme of it all. And that if you are alone, then join those of us who are also alone, but fight.

This morning, I had a heart attack, including the pain, for 30 minutes, as the electrical signals to the four chambers failed, two ran backward, pushing blood into a pool, others beat so fast they pushed no blood at all. I passed out every couple minutes. Medication helped a little. But when conscious I prepared and went out, got to my appointment on time, to wait and have a doctor tell me that “Well you don’t look late stage” and “You are far too young to be seriously ill”. I pointed out that the parts of my arm which were not purple or blue had one very white pale arm and one very red arm and hand - the visual evidence that no, I was not made with play-doh, so a hint of something WRONG.

This was my first appointment for a new GP in a city where waiting lists of people to have a doctor are in the four figures in over a year. He wanted to know my pain on the ’10 point scale?’ My muscles in my arms, face, shoulders, back, body screamed from lack of oxygen, my back screamed, it hurt to breathe, and I was on oxygen. I said, “If getting a needle in the roof of our mouth is a 3, then the pain I experience is generally a nine.”

“You realize that 10 is the top of the scale, so I doubt it is a nine, and not NOW.”

I asked, “So it doesn’t go higher once the pain has made you lose your sanity?”

Dr.: “No,it is just 10 points, so do you want to change your answer?” (meaning: change your answer)

I said: “Well, I guess when I ripped those muscles from the inside of my ribs while rock climbing would be a two, cause that would make when I scream and scream, having gone insane from the pain (after 18 to 24 hours without pain meds, or after a hard day) as a NINE (he raises an eyebrow at me of, 'really, a NINE?')" I amend, "I..I must mean an eight, then I guess right now I am about six?” He had looked over to Linda when I talked about screaming and she nodded, the usual, "I am pretty sure you are lying, so let me ask someone who doesn't have your illness" doctor thing (Never trust a patient, I guess doctors learn that from TV?)

I thought about the times I have had to be held down while I screamed myself hoarse, or when I dislocate my jaw in seizure, or ripped the muscles off of my spine but have to use them anyway, and reset my jaw with two hands. I thought about the care workers for palliative people who said the hadn’t seen anything like this, or those workers who quit after one or two shifts because they told management they wanted to wash dishes and make sandwiches, not see someone being literally tortured by the malfunction of their entire autonomic system. And not just that, as the pain signals are jammed up in the spine from the neuropathy which is as painful and nerve wise, the same, as radiation poisoning. I think of the people who have had to turn away from looking, to walk or run from the room including Linda, including someone who had been treated for cancer because ‘watching that…oh god, it made me want to throw up.’ But I have been chastened by the doctor and the scale….I am a six, not that bad, not seriously ill...at my age (can you tell I live in a town of seniors?).

I am also ashamed, having been forced to strip mine my mental 'worst of', and the memory of my pain and having to focus on my pain NOW makes me almost entirely unable to function: the meds do only block about 50%, later crying as I try to stimulate my body to keep going. The shame makes me feel naked in a way that can't be covered, so I cry myself to sleep. I am not the only one who had been made to feel that way, not the only one this week even. Hold my hand and know this, it is the openly 'conditional caring' that doctors offer which brings that shame and hurt (that if we are judged not worth, too mental, too young, too unbelievable, too unlikely, too late in the day to care, too female then the caring doctors have offered, and can improve our quality of life...is withdrawn).

I get through each day by focusing so hard on each task that I don’t have time to give in to how bad it hurts (Science article call this 'flooding with the senses, using one sense to block out others). At the doctors today, because I am not dead, not fitting a disease stereotype, and certainly, according to the doctors’ idea, not ever going to be in a 9 or 10 of pain (though I have screamed until I lost my voice….for three days), I got emotionally hurt. But I went, and I will go again, to this or another doctor because I want hope. And I want to live.

I will fight and I will fly. And I will always be afraid, but no, it won’t stop me from going on. Not for long.

Happy Canadian Thanksgiving from one child of disappointment (you know, the failure, the screw-up, the sibling that is pitied and never an equal) and black sheep of the family to all the others out there. You’re not alone, and don’t let them think you are.

Unknown: that dread which will kill me, but also keep me going, alive.

The most important aspect of our trip was that….I left the apartment, and I have Raccoon to thank for that. I said to Raccoon that I would come to comi-con this year (not quite understand that comi in comi-con stands for COMIC – but it is more than that, it is a manga, publishing, film, TV, media, cinema film festival event). But as the time came closer, I had fundraised to go but I did not want to go. I told Linda that every day.

I was scared.
When things go well I can go outside with someone once a week, I can be awake 12 hours a day but 4-6 of those hours on average are spent doing body tasks to keep me functioning and alive. So, move from bed to computer, and shower once a week, and be on oxygen all the time and be in pain most of the time, but a level of pain where I can function after the first hour or two awake. And with DVD’s, manga and on the weekend postcards, there are aspects of pleasure. With Japanese works of Fiction like the Story of Ibis, or Harmony or Manga like Ooku, DVD sets from the US/UK like Life, Luther and Burn Notice, or films like Bajo la Sal I have the mental excitement again of engaging a mind which is smart, clever and taught me something by bringing me up to a new level. Because who doesn’t need to know how to make a cheap tracking device and set off explosives (Burn Notice, the McGuyver of spy gal). So, good days moments of engaged and alive, and mediocre days, DVD’s like Sanctuary or manga like Otomen or Honey Hunt to keep pain’s claw marks ignored another second and some vocab intact even if I don’t know what city I am in, or who is President/Premier.

It is a cocoon of habit which lets me remember what to do, where to go, and to stay alive while doing it.

What terrifies me is the unexpected, the uncontrollable, the random because that is what makes something which is a painful dangerous condition which will eventually kill me into mind exploding agony where even WITH help, I could die that night, that hour. So when a ‘month of rest’ to get strength for the trip turns into one problem after another, and I am passing out all the time, then hit with a heat wave which leaves me trapped and terrified. Heat hurts. Imagine those hot dogs on the grill or in water as they swell and swell until they skin splits open. That is me. I sleep and all I have are nightmares where my limbs and torso is razored off in layers like a butchers shop does with sandwich meat. And I can’t wake up because I am now in a heat coma (the heat of the blood to my brain is hot enough to give me seizures, but I am too weak to wake up), and if I do wake up, I am paralyzed. That is summer.

And if that pain is not a minute but hours and days and then see what the unexpected and the uncontrollable becomes: pain, terror, loss of function, loss of life (I don’t mind dying for an ideal, I do mind dying because of a heat wave).

A trip to comi-con offered infinite possible problem, like Borges’ shop of mirrors of ‘possible’ from breaking down in a hot California plain desert stretch of highway to a blood clot or stroke (and it WAS in the 90's for several days). It was UNKNOWN, that was the fear. Add in that my medication was running out, and Linda’s job hunting had not resulted in a single short list (problem when over 1,000 managers are let go on an ISLAND where the main employer IS the person who let everyone go – and then they retroactively hired back all of the levels of workers BELOW her, without letting anyone including her apply for the jobs – welcome to British Columbia) or interview. Scary. And of course, being B.C., unemployment is capped far below the poverty line. Scary.

So I cried and begged her to go without me, into the unknown without me, she could take a friend. But I made a promise. And I keep promises.

And the first day I slept 6 hours, the next I slept 4.5, the next 4 hours, then three hours. The damn maps were off and the driving times we planned on were all wrong. There was (surprise!) rush hour in San Fran, in L.A., in San Diego, in empty highway. There was road construction. We pulled up at 1:00 am or 2:00 am and THEN I had to go to the bathroom, finished at 8:00 am, awake at 10:30 am. I almost went to the hospital three times to San Diego. An sane person would have. Except I knew we didn’t have the money and since I figured I would die anyway.... (maybe not a 'sane person').

I made it to the finish line, to opening night, for a few hours seeing steam punk and the sights, and then I wasn’t really human anymore, unable to move, to speak, out on the bathroom floor. For 12 hours, I didn’t know what ‘words’ were, I had nothing going mentally and couldn’t move, I couldn’t even moan my pain.

So a day in bed and when I went out the following day I used Indy and I went to see Moto Haigo, the mother of shojo and yaoi manga, who wrote about things in the 60’s and 70’s wrote about things which aren’t even talked about in the west today, 40 years later. One early manga series was about a young teen whose mother remarries and the step-father sexually abuses him in a brutal and systematic way, while the step father leaves his own son alone. The only way the teen can find a way out is to rig the car to kill the step-father, only to have his own mother in the car when it crashes. His step-brother doesn’t understand the mixture of grief and relief he has at the double funeral and hates him. That’s not an uncommon story, not when churches are giving out payments for tens of thousands of abuse cases, just not a story WE talk about.

Haigo showed a story, Lizard Girl about a woman who gives birth to a girl and to everyone else, the girl is a girl but to the mother, it is a hideous lizard. This was Haigo trying to understand why her mother was active in her disapproval of her career, her life, of her. That classic question of ‘Why? Why can’t they see me?” is answered in an elegent manga.

I went to the Yen Press panel, and found they are releasing another in depth historical manga by the creator of Emaa. I went and got a book signed by the author, for free: and given to me. They promoted Beautiful Darkness, a book on my book list by having the authors sign and give away copies. Score!

And due to crowding I was left in the sun waiting for a trolley for over 30 minutes, and ended up with heat exhaustion and a fever. That's the unknown for ya. We can't know until we go to look, and that's the risk and reward.
But I wasn’t afraid anymore. I had gone BOOM in the redwoods and this is part of what it looked like, and I laughed (and later cried). I went to a museum and had a seizure, I went to old Town San Diego, I went up and down in elevation and my lungs hurt, and I was passing out daily. I was stopping breathing when passed out. But I wasn’t terrified, I was doing. I was seeing.

I realized that for me, the great luxury is in doing. To experience something, to see flowers, or oceans, or forest, or cities, or shops would have bad experiences, and okay ones and occasionally great ones but they are all things I cannot get inside a room. I can’t talk to Nene Thomas inside my room. I can’t see antique original stagecoaches in my room. I could not eat at a mexican surf shop and restaurant in my room. And while I was hurt, emotionally and physically, I was reintroduced to....well, me, or the type of me I prefer: dream it and do it.

A year ago, I risked all to see lava. Now I might need to risk all to see a historical street, or to go window shopping or buy specialty tea, or get turned away as a homeland security threat at JPL (for asking security booth of Buck and Bob where the visitor center we were cleared to visit was located) for trying to get postcards. Just a tip Jet Propulsion Lab, the place where unmanned probes of spaces has info and images rendered: if you DON’T want people to know where you are due to SECURITY then you might not want signs directing us off the highway right to the entrance, and you might not want to fly a GIANT American flag larger than the building on top of it. Just a little security hint.

So do I want to get outside for a wheel and see the stores, or go for a picnic or do I want to live as long as I can?

I want both. But if I don’t get out of room, out of the comfort and fear zone, then I won’t get either life OR living. Winter will be here soon and then I really CAN’T go outside (I get frostbite indoors). I needed to get back in the game, that friction called living. And I wouldn’t have done that without Raccoon.

I could not have gone and keep going without a lot of people: every person who gave florestar, dishes, utensils, medications, in order to give me a baseline of a life. And every person who sent a letter or card that kept my spirits up, who sent stamps or postcards to keep me able to reach other to others, who sent manga, DVD's and gift certificates to allow me to engage in intellect, and for those times when I just need to sit, stare and recover. Because out for 4-5 hours and a day recovering is me living on the dangerous edge of going wild (my 4-5 hours is like your 48 hours without sleeping having a party!). So after 5 hours, even after sleeping staring at Sanctuary Season 2 and watching 'Sanctuary going to Comic-Con' extra makes me loopy and smile and go, "I'm here, they're here, we're all here!" (yeah, just in different years - just keep lying there space cadet girl!) Thank you each and every one who helped me in all those ways.

My promise to Raccoon and his to me of Comic-con got me jump started back into seeing, doing and being (him showing me how to get rid of that extra fluid, Indy style). Doing, being - I might have spent much of the travel experience in the van, might have never left it but once in Yosemite, but I was THERE.

The very thing I feared was the gift that Raccoon gave me: The unknown. Because it not only contains all things I fear, but all things I will fall in love with, all passions, all excitements and joys. And that I might not remember them for more than a couple days doesn’t matter, the habit of living and expecting more, both in life and from myself is an attitude I want to cultivate. I don't know what I can find, not until I try.
Thanks Raccoon.

I did not choose this disease, but it is mine.

This has been the weekend that felt like a gut hit: when you found your school had been turned into an hair-gel warehouse, and your family home is now a set for TV ‘comedy of slum dwellers’ pulling in 26 million viewers. And they haven’t even taken down your posters or your ‘third place pretty miss junior high’ award from the wall. It wasn’t pretty. Linda is sick. I got a fever and wrote the last postcards to post on the floor after I fell over and was too weak to get up (don’t even remember what I wrote so if you get some scrawl, you know what happened).

The Specialist, my last hope for treatment said he WOULD have helped us if only we had seen him 18 months ago….except we did see him 18 months ago….and then he wouldn’t help us. ‘Not my inch’ I went in INDY. Specialist actually said, “Well, you know there is no treatment for your condition…” Well, not the autonomic part. I passed out tonight because my heart stopped. It now has an evening habit, if I breathe, it stops, as I don’t have the strength to breath and have my heart beat at the same time. It is surreal, watching it on ‘the big screen’ I call my heart monitor now – “oh, it’s stopped!” Linda says, while I clutch my chest, old news to me.

Friday Linda and I spent seven to eight hours because with she is the primary care giver and sometimes it is hard not to hate the disease, and also hard not to fuse the disease and the person. It is hard not to feel, when any forgetting causes others pain, that you are failing. I am failing because I cannot remember three days ago, she is failing because the medicine isn’t here, etc.

I decided that I am not actually responsible for getting this disease. I did not buy it, or test drive it, or pick it out at a factory. I can’t remember things. If a person makes a snide or pointed remark about that, then that is their problem, and they need to go somewhere and solve it, like therapy.

I did not know if Linda was going to build walls in her heart, if this was as far as she went or not. It feels to both of us like the big descent. The top of the roller-coaster where there seems no bottom as the car keeps turning further and further towards the ground and then you start to drop. For me, there is no ‘chicken line’ for getting out, there is no closing the eyes, there is only what I call ‘The Fire’ and that is all. And few if any will go the distance, and I know that. It hurts, to be alone, to know the isolation will get worse, but people don't want to see what it looks like when all falls down.

We talked, and expressed fears, and anger, and irritation and I am trying to create multiple weekly respites for Linda, I am going to try to be more positive. She is going to make a place where I can feel safe. And I am not going into a Care Home. Because there is a fantasy that if I go to Home that we can spent the time together as ‘quality time’. Except the same paid people who don’t care for me here will be caring for me there, and for me there is only one thing keeping me going: Survival. And survival in a Care Home would be doing what it takes, and that isn’t sitting on the porch in case Linda drops by so we can have quality time. And what is that? Talk about five years ago when I remembered things.

This IS the time. If we want quality time or better quality, we have ourselves to find it. This, right now, might be as good as it gets. The people who are here, like Linda, get so used to me in pain, and so tired, very tired, that me in pain has no meaning. Linda would run to help someone who twisted an ankle but after several hundred nights of tears running down the sides of my face, or moans, I am just a lump that stops sleep. That is what it is sometimes. Hopefully not all the time.

“The Fire”? It takes you to the limit of what can be survived, both as a human being living it, or someone watching it. And that is FAR beyond what can be stood. What can be borne. At some point you have to turn away, if only a bit, to shield yourself. There is something for each of us that we can’t stand to watch. For most care workers it is ME, in a level 2 seizure (a level 6 would rip muscles, leave bruises, or internal bleeding). And knowing that EVERY single thing will get worse, will stop working, or hurt more, whether it is simple as swallowing (3 days or an IV), or new ways of pain. And there are so many types of pain. At some point, the eyes and heart need a break. For those who care.

Except for me. I am strapped in and will ride the whole way. If I want to survive, not just as a body in a bed, but as Elizabeth, as I AM then I must always turn to face the fire. No matter how hard or impossible, I HAVE to do it.

In the Bible, Daniel , three of his friends are to be thrown into a fire so hot that it kills people who even approach it. It is made because the king made a gold image of himself and only three would not worship the king every time he felt like it. Shadrack, an ex-prince of Israel, tied like cordwood faced Nebuchadnezzar and told him that even if their god did not save them, it changed nothing, and they would not worship him. The king in a rage had them thrown into the fire, so hot that the soldiers which threw them in fell down dead.

Weird story right? But for me, it means so much because Shadrack said he COULD be saved, but did not expect it. Nor did how he feel change, or how he choose change regardless. He would not do whatever someone who bullied and threatened wanted.

I never wanted to have Autoimmune Disease Autonomic Failure and Peripherial Neuropathy with a Seizure disorder. I didn’t ask for it. And yet, unless there was a way to stop or cure it, I would not give it up. There is no way I would ask for another to carry this, if giving it up meant that some other person, some other statistic got what I have already lived. Even though I pray, I beg, (at times) for death, for not waking up from sleep, or a seizure, for a massive stroke, but then I work full time on surviving again. It is MY path. I will not accept that I deserve it, or that it is my fault.

In a world where ‘someone must be responsible’ that is so ‘wrong’. I do not deserve this disease. You do not deserve your disease. I will do everything I can to improve my quality of life but I will not tolerate another to mock or abuse me or another because of a disability and disease I or they had no control over. Yet, this is where I am. And while I could have been saved, I likely will not. So now it is time to face the Fire.

The Fire means that my ‘right now’ may get five or 10 times worse. On my 1-10 scale, for almost all, my 2 is your 15. It is your worst fear, going on for days, then weeks, then months. Why do you think I have guys who hit my head for 9 minutes in boxing and LAUGH while it is going on?

Even what I can’t feel hurts. The bone hurts, the bone marrow hurts, the muscles ache, they scream, they explode like a strike of lightning and that is just one of the over 200 bones in the body. Does my pelvis hurt? Yes. Does my horsehair nerves hurt? Yes. Does my FACE hurt? Yes. That is just life.

The worse things get, the less I can get out, the less I can have fun – Oh I tried to go to see the squirrels twice recently, but it was a disaster, the less people want to watch. But I will keep trying. Always trying, always striving to be more, to be MORE. To grin more. To watch me crawl across 50 feet of broken glass with a grin between the other expressions, the blood coming out my mouth, it would make people ill. I spat out the blood this morning from a couple bad ones last night. It is what isn’t filmed or photographed. And it will get worse.

I am lucky. Linda and I have made a pact. I don’t know how much longer I can keep going, or what it will look like, but I will keep breathing as and when I can. Orwell said in 1984 that "In the face of pain there are no heroes." I don’t believe that. I believe that hundreds to thousands of homes, behind the veil that we as a society pull over the sick, dying and disabled, that there are plenty of heroes. I watch the Olympics and I envy them, knowing the hours of practice at a sport they love. People think they are heroes, doing what they love? I think of those who competed while injured and that is hard, and yeah, inspires me on a bad day, but that was just a day or two or a while, but some people, they face the pain and go on for months, years. Orwell could not imagine a world where someone would face the pain and chose it anyway, and then do MORE.

‘Enter the Hero’ says one of my favorite characters, Peco, in a film called Ping Pong (nominated for 8 Academy Awards). He says it every time he enters the competition in Ping Pong, only he has natural skill but is lazy, and loses. And then he pouts….and throws things. And some point, having dropped out, almost, he starts again, and trains, and trains. Meanwhile, his friend, nicknamed ‘Smile’ as he never smiles, and has no natural skill, just pure hard work, starts winning. Smile kind of hates Ping Pong but likes friendship, and at the final competition sits in the stairwell, while Peco has worked his way back into the quarterfinals.

“Do you believe in Heroes?” Smile asks his coach. Who tells him no, just hard work.

Smile says, as he listens to the crowd, cheering Peco win to the next level, “I’ve been waiting for you.” Sometimes it is enough to be a hero to just one person.

When things are bad, very, very bad, and all I can feel is a hand, or smell something, or see white, I go on, and try to think of a joke, between the pain. I will hear myself scream and wonder why there are so many ways to hurt and not near enough to orgasm. Ha. See, I did it. To be gone for a time, to come in, dopsy in my face, in INDY and have someone, without hesitation say, “Good to see you” and grip my hand, it is, something that is valuable beyond words.

I work so that I may be ready, to be the arm, the voice, the person who reaches out when there is nothing left to hold. I work so that I am that again with Linda.

“Enter the Hero”

National Invisible Chronic Illness Awareness Week: The four big lies.

This is National Invisible Chronic Illness Awareness Week (NICIAW?). So I have a print out post: four lies used about and against those with Invisible Chronic Illness’. You can print them out, carry them with you, to identify and console yourself, to root out of your own head these misconceptions regarding Invisible Chronic Illnesses.
I have many friends with Invisible Chronic Illnesses, and as each month passes that number grows. I want to write about this because Invisible Chronic Illnesses is NOT just Chronic Fatigue or Fibro but it can be anything from Depression and Bipolar, to Lupus, Arthritis or any of the autoimmune diseases like hyper or hypothyroidism. I have several Invisible Illnesses.

Other people have done a great job writing about the illnesses themselves, or the effect on their life like Lailah’s “television on DVD is the holy grail of the chronically fatigued” (Amen! Cats are good too!). So I will identify four of the big lies which our society, the people around us, our relatives, and even the voices in our head have accepted at true. But they aren’t true. Yet this might explain why people around you act like they act (or have run off!).

First is: You (the person with the illness) are doing this to ME (the person who is emotionally connected to the illness). That’s right, the most common lie and the one with the greatest effect on your life will be the conscious or subconscious belief of those who care about you that you are doing this DELIBERATELY against them. And yes, I know this makes no sense. But have you heard this phrase: "You let me down!" Yes? Let me give you some examples.

Fatigue: A loved one who gets upset, annoyed, angry because your fatigue comes at an inconvenient time (Illogical yes, but over time, their feelings that you are doing this to THEM grows, and the comments and actions against that occur).

An example: During a deep depression earlier in life, a loved one called and said, “It is time for the family Dinner!”

Linda responded, “Beth is very, very depressed and cannot move.”

Person, with anger in voice, “But I have made a ROAST!” (translation: Why are you doing this to ME!)

Repeat often until comments like, “Well if it is okay with BETH (Sarcasm).” Starting showing up. Because we all know that unipolar or bipolar depression is just an on/off switch used to inconvenience others (wha?).

Pain: The longer time goes on, the less sympathetic people are to the level of pain they cannot or will not experience. “Oh I’m sure you can do (whatever it is) if you really wanted to.”, “It can’t be that bad.”

Emotion: I know people who are educated, who have degrees, who have doctorates, who are friends and have no problem with my illness but consider that the mental illness of their parent as “Abandonment” (Many people: “Why did you Abandon ME!”, “Why did you burden a CHILD?”). When I tried to point out to one person that their father in a manic state throwing things out the window was not directed at them personally but symptoms of a disease they said, “I will hate that man until the day I die, because he didn’t care about ME, all he cared about was HIMSELF.” (Even though the man’s next actions were to run off into the snow nearly naked).

Well, guess what? Because YOU have a invisible chronic illness and in a different fashion the same will be thought or said by parents, by partners, by friends, by loved ones as they distance themselves from you (high, high rate of break-ups between partners where one has an invisible chronic illness): “Why are you so uncaring?” “Why is it always about you?”. “Why so selfish!” As a book on autoimmune diseases states, “the person with a disease, in order to maintain survival may appear to be self absorbed.” And people resent that. You are focusing all your energy to try and reach the toilet, when before you had extra energy to lavish on your partner. It takes an mature and special person to recognize the new reality and not resent it. Because other people will. They can know that you have a disease, but they are so busy in their headspace and life that they can’t get into yours. Only how YOU and your ‘so called’ illness is destroying and rewriting the dreams, habits, expectations they and you had for your life, and how it is changing theirs. They don’t want their life to change. You never asked for your disease, and you don’t really want it. Well they don’t want the change that comes with it either. The only difference is you cannot walk away from the disease and the effects.But if they blame you, they can.

So they blame you. Parents may huff and verbally state that well, their child’s partner is SICK (in a tone which brings that into doubt) before listing all the ways THEY have been inconvenienced. Who knew by getting ill that you were creating all these martyrs?

Is it reasonable that a parent/partner/loved one may abandon taking you to medical tests where radiation or liquid metal is injected into you to help find out what is causing your illness because it is interrupting: their tea time; their daily routine; their ability to book lunch with friends? No. But then these are defensive emotional reactions to change, and have nothing to do with empathy. IS it your fault or problem? No, not unless you happen to be the global mastermind behind who gets Chronic Fatigue and who does not. Stuff that is beyond our control happens, and that will affect others. How they deal with that will alter how they view US. That is their issue, not yours. Except of course, 60% of your friends, relatives and even your parents aren’t talking to you anymore. And that sucks.
Your life changes….because of that lie. That you needed to be institutionalized while your medication was balanced becomes that it happened in order to embarrass your mother; or that you have fatigue in order to deliberately miss thanksgiving and that you lost your job due to an autoimmune disease because you wanted to be called the ‘failure’ of the family.

It is a lie. Those who run away use it. The truth other should state is, “I don’t want my life to change, and if you have to suffer alone, so be it. As long my life remains the same.”

Second big lie is: “You should get better/You CAN get better.” Everyone buys into this one, even us. Because there is always the person who DID get better, then wrote a book about it. In fact, the greatest reason that Chronic Fatigue Symdrome/M.E. in North America got moved a bit from being considered a disease of bored slackers and unmotivated educated women is because the very doctors who had looked down on the ‘whiners’ who came in claiming they had CFS:Until those doctors GOT CFS. Suddenly, treated in the exact same manner by colleagues (that if they really wanted to they would get better immediately; that they probably have several emotional issues, and it was in their head), article after article came out to show that they were NOT faking anything. Articles about how it was a REAL condition. And a few doctors who had it held medical conferences. Where are Chronic Fatigue or Fibro in the popular TV shows? Or many or ANY of the invisible chronic illnesses? The ONLY medical show I know which discussed the pain and limitations about Fibromyalgia was Strong Medicine, a female based medical show like ER, but on the Women’s Network. Or as Wikipedia summarizes: “Many members of the medical community consider fibromyalgia a ‘non-disease’ because of a lack of abnormalities on physical examination,… Many patients diagnosed with fibromyalgia also have psychiatric disorders.” Nice.

I have had on average 10-20% of the CARE workers sent to me, those paid and trained to assist my care tell me in one way or another that I could get better if I only started: eating green vegetables (left a book), eating beets (left a pamphlet), with divine intervention (prayed), with a change into positive thinking (offered to leave a book), and so many other remedies offered….ALL done without having the slightest idea of what my condition is. Nope, they never even asked, but knew that eating only green and purple foods could cure me. There IS no magic bullet that we just need to find. No single cure all act.
The most common assumption pre-diagnosis from EMTs, from semi-medically educated people I encountered was that either I had a) Stress, b) Fibromyalgia or c) Both.

Go to ‘Heath’ section of any newspaper or any online ‘news’ and you will NOT find the 1 in 6 of us with disabilities/impairments. What you will find is article after article on how to get better, to be better, to make sure you stay better. And columns which offer to do the same.

This lie is so pervasive that it twists our hope and energy and everyone I know who aquired an invisible illness has to fight the voice inside in the head that says, “You are better than you show.”, “You could get better if you tried again”, “You should get better.” I fight it. It takes years to be at peace with, ‘this is where I am, and to survive, I need to find the healthy balance with my disease.’ Why? Because the idea that we did EVERYTHING right and yet got a life-changing disease for no reason at all goes against everything that our society is based on. There must be SOMETHING we can do. So there goes all our energy. Because people who only feel they ‘should be getting better’ have no time for joy, they deserve no luxuries, because they SHOULD be getting better. And those who view them feel the same. “Why are they watching TV, why are they taking it easy? They should work on getting better.” Sometimes there is no better, only here.
When we don’t punish ourselves, the society does it for us. The adage today is no longer, “I felt sorry for myself because I had no shoes, until I met a person with no feet.”

It is, “I felt sorry for myself because I had no shoes, so I invested in self help tapes which taught me to make shoes and then I tried to loan them to the person who had no feet but they were to into ‘their spiral of negativity’ to accept that the ‘idea of the feet’ is one in the MIND which can be overcome!” – yeah, we’re kinda like assholes culturally.

“Have you tried acupuncture?” (if you answer no, the implication is…you don’t WANT to get better!), “Have you tried alternative medicine?”, “Have you tried aromatherapy?”, “My cousin’s sister-in law’s babysitter had something like you and she ate liver and it cured her.” (What did she have after you investigate it all? Morning sickness). Fine, want me to act, I can act! (act out!)
Until ‘Spoon Theory’ came along we didn’t even have a way to demonstrate the difference between us and other people, to explain the choices we make in a normal day. And yet people are STILL haunted and driven by the lie that You, yes you, the person with Lupus, with a dying thyroid, with Fibromyalgia, with peripheral neuropathy and fatigue of unknown cause….you must have done SOMETHING to cause this to happen to you. And thus you must need to do something to reverse it.

The last big lie is a tie between two: “I am doing you a favor” and “You aren’t an equal human (because true humans are healthy ones!).” – you will hear the first one, and you will be affected by the attitudes of those in health care by the last one (and the first one).

Say that you belong to a church, you taught the children, you were in the choir, you were on the annual Xmas committee. But now you are, due to your illness, unable to attend. You get no visits, you get no people bringing the Xmas committee meeting to you, but a note in the post saying, “We’re praying for you!” – and from their side, they are doing you a favor. Except a favor is treating others BETTER than you would want to be treated in the same position, not simply chipping of a tiny slice of your valuable time. Acknowledging someone is alive is not a favor.

You have a friend you meet monthly to talk with. Sometimes they cancel due to a cold, or an emergency commitment. ‘Things happen’ and you understand. You sometimes have to cancel due to fatigue or other illness related conditions. Yet over time, that friend drifts off because you ‘flaked out too often.’ Huh? The pace of life your illness sets for you is the ‘wrong one’ it seems. The ones that stay, they are the real friends.

And while you may end up being someone who is unable to work, or who can only work in the most limited way. And you need workplace accommodation, or have limited to no income, and a life where all money is spent on medicine. Because of that, soon you can’t talk about what movies you saw in the theatre, what coffee shop is the best this month, who is dating who, the best resturant, because you are now moving at a different speed, with different disposable income, but more important, different disposable TIME than others. Just getting outside can be a luxury.Yet you are still an EQUAL. But you aren’t treated that way. Often you are treated that talking to you at all is doing you a ‘favor’ (or worse will end up on some resume as ‘assisted social functioning of the disabled’). And in health care, getting equipment to assist you from insurance or government is treated as if you are the child and they are the adult. But actually you are the customer and they are the employee. I mean, they get paid to help YOU right? So why do they treat you like talking to you, or helping you is them doing YOU a favor?

In order for me to get a discounted pass to the YMCA-YWCA I had to sign a form that I would use the pass ‘appropriately’ and with frequency (though when asked no one knew what ‘appropriately' was). Odd, I thought the Y was based on equality; do they count how often the people who pay full amount go? Then why count the times those who pay 50% go?

Often I am to sign agreements that if I show up late to a meeting with someone to coordinate aid I will lose my appointment after being told while they look down the nose at me that, “There are OTHER people involved, you know.” Yet, of the six to eight agencies and all people from those agencies, I have NEVER had them show up to a meeting I set on time. Not in over 2 years. And when I take that agreement form regarding MY time and MY commitment though ILL to be on time and write, “And if the representative is more than ten minutes late they shall forfeit the wages of that day to a charity of choice” I am told to stop being ‘ridiculous.’ Is it? Seems to be ‘One rule for us, one rule for them.’ And the lie they tell themselves is that in doing this, we are all equal.

Equal. Okay, here is a personal secret, I never needed to pay for any university unless I chose. Why?: in testing from elementary up my scores were not within the top 1%. Nope not me. My scores where with in the top 1% OF the 1% which took high end testing. Which meant that I was untestable by Mensa standards, and most standards, because they were incapable of learning at the speeds or seeing the world in the way I do. Because they weren’t ‘smart enough.’

So what?

Should I spend my day (as some actually do) looking down on every person because I am rated or tested ‘smarter’ than they are and have to amend my speech accordingly? No. Why? Because they know how to fix my car and I don’t (well I know the THEORY, they just are better at the practice). Because they are holding a dental drill in their hand inside my mouth. Because the choices, the decisions, the values, and the potential of each humans is what defines them, not the comparison in just one venue. We are all humans, equally.
I receive assistance for my invisible illness because I am human. That is the only reason required. And that is the only reason that our society requires, despite the caveats so many want to add. I am equal and all those with invisible illness’ are equal as HUMAN beings. I can’t make jewelry like some, I can’t mediate like others, and I can’t run anymore but those who can are not ‘doing me a favor’ to talk to me, nor am I doing them one.

The most harmful lies that those around us believe are that we, by being ill have done something to THEM, inconvenienced THEM. Or that we should and must cure ourselves. Or that to even be or talk with us is doing us a favor and that we, by being ill are no longer equal humans in all respect. We can’t change every person who flees into the refuge of these lies, or in the refuge of blaming you for your own illness, but maybe we can tell the voices in our own head to shut up. And maybe even show one or two people close to us that no, being fatigued is not a plan to destroy the picnic, it is just being fatigued.