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.”
‘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.
9 hours ago