Ha. Hard day, and got some help breathing. Thanks. The heat is growing and some of the new meds are changing me. The edema is coming off of me in pounds, my lower legs are thinner than my knee cap and up top I think I got downgraded from B cup to A cup. I literally change every night, collarbones back and clothes hanging. I'll try to get a picture tomorrow after boxing. Is this good or bad? As Linda put it, it will be easier to move me when unconscious. Easier to wheel the 5K too.
I know, we know this is my last couple months, maybe a year or 10 months if I am really lucky. But there are times, like when I fall backward into the darkness and I stop breathing and they are working on me and when I open my eyes twenty minutes have passed. And the times two people are working on me or four people, or the ER, with machines hooked up everywhere and I think, "Am I worth all this effort?"
Then I think, "I better be." Like Milton says there are some who only sit, but I have little patience to wait. I box. I write. I exist, and that is worth fighting for. Been listening to Mumford and Sons: four guys (including a double bass player) who are like a rockin' Maddy Prior/Carnival Band - I recommend full screen if your connection can. As one comment says: Guys with beards make good music!
If you decide you want the album (like I did), it is on Amazon for $9 (As they are from the UK it is 8 pounds on Amazon.co.uk - so a bit of a bargain for the US). Or get Sigh No More download - all 12 songs for the same price. (329 five stars)
“Coward: A person who lacks the courage to do or endure dangerous or unpleasant things”
I endure, but only because I fear something worse. I am a coward. I don’t want to die.
If I spend life only being afraid or avoiding fears then that life isn’t mine anymore. I may be skilled at surviving, and I may sacrifice choice and dignity or endure what others fear, but for what purpose?
And so with a cowards’ cunning, I am skilled at surviving, sacrificing what others don’t consider, evading, plotting, and above all, keeping a few heart beats or breaths away from what I fear the most: death. I said to Linda, “’To be with loved ones’ post death, that’s my nightmare,” I shuddered, “Ug, spending eternity with Grandmother ‘helpfully’ ripping my actions and decisions apart to tell me what I did wrong with my life in detail”
In ‘Ne Le Dis a Personne’ (Tell No One’: the winner of nine film awards) the protagonist Alex gets an email at his pediatrics office eight years after the murder of his wife Margot. The email only opens at 6:15 pm, and shows a CCTV camera atop an escalator. A woman stops and looks around, then stares for two seconds into the camera. She is Margot. Alex, a man who has a job, a car, an apartment, everything but what he grieves. As he searches for what, why and most of all how with this and other emails, he is framed for murder with the police closing in. But Alex believes he is close to finding about Margot, and has an appointment that might mean seeing her. So he runs.
In watching this grand French chase scene, I about how different a person looks when they are running toward something than when they are running from something. Alex did not scramble, did not waver, and did not look back. He was running towards love, towards the dream of reunion and end of the long grieving. How could a criminal, a coward, thinking only of evading, match that?
What about me, am I running towards something or away?
Away.
I survive, but in not dying I am running from living and I don’t know how that happened.
When did I lose my passions and vocation? When did my life reduce to a focus on not dying, no more hospitals this week or delaying degeneration? Maybe it happened during the 15 months of scratching by, the fear that sets in when there are days and then weeks without all the medications, or even the important ones. Or was it because we kept running out of food, juggling money to keep the power on. Or did I lose focus in the two years I didn’t have a GP: or the twenty months without pain control? Pain is like the water which cuts through stone, as it erodes you day by day, smoothing your life into a hazy drudgery. At some point I sacrificed the freedom to dream. Yes, I’m alive, but without the aspiration beyond simple survival.
People describe their goals and dreams in different ways: some speak as if it has happened, some speak soft and shy, lest it scamper out of their life, some talk boldly, their defenses already up, guarding the hurt inside. And then, over time, that description changes, until it is mentioned with an embarrassed laugh, when and if it is mentioned at all. Others talk about it with a smile because they found something on that journey of aspiration that was worth stopping and building around: stumbling into unexpected contentment, which have us repeating with wonder, “This is my life.”
But ‘this’, a collection of medical emergencies or things I do to avoid dying isn’t my life. It just happens to be the situation I exist within. Linda, in her generosity of kindness, devotion and compassion gives me the security and comfort of our home serving as my ‘care home’ (for whether it is public, private or other facility, my disease now requires near full time care in a controlled environment). She also gave me, as a birthday gift, the grace of choosing to dismantle the emotional wall of protection she built over the two years of hospital trips, emergencies, specialist who gave up, and the conversations with ‘white coats’ about the specifics of my death.
Nothing I am or have done deserves her gift. MY life is better because she is with me, not just physically, but as ‘one flesh’. Linda’s choice to grieve with me, to wound with me, and live without emotional defenses with the person she loves most of all as I experience the late stage pain and degeneration. She bears this in order to share the joy, tedium, frustration, compassion, spontaneity, kindness and humor fully as my partner, my lover, my friend, my companion. She is running towards me.
What am I running towards?
There is no going back to ‘before’, not for me or for anyone, you grow forward, not backward. Neither we or this planet can ever stay still, the only things captured in amber are those long gone.
Langston Hughes in the poem ‘A Dream Deferred’ asks what happens when our dreams are deferred for us socially. But what about those who spend too long getting beat down just in order to survive?
Medically, I have hopes that one of the greatest medical problems from the last year is now in relapse. And if that stays true, then I will enter this summer with more energy to ‘do’ instead of just ‘be’. I don’t get any more energy or time, but in teetering stability, I will have my energy and time to spend elsewhere.
I have goals, barely visible. For example, I’d like to qualify for the Boston Marathon. I figure no reason not to dream big.
In order to qualify I have to be able to wheel a marathon first. And that means I need to wheel a 10K before that. So I am aiming to wheel a 5K. And I have an agreement that if I wheel more than two 5K’s before late autumn then we will look at renting a racing wheelchair again. And to that end, I have been wheeling outside by myself once a week. I can do 1.5 km now.
It takes a lot of planning and ‘doing’ to reach a dream.
I am tired of surviving. I want to live, and that takes risks, both emotional and physical. Even now, exhausted and in pain from my 70 minute workout at the Y yesterday, I want to shake my brain like a snow globe and see what dreams become clear as the rest of stuff that clutters life settles into background. Curious to start living. Yeah, I’m back.
I am sorry about not posting, but I did not have internet…or power, or air conditioning so I kinda went into heat trauma. But there is good news, I have power now and, um, I am eating easter egg jelly beans (yum).
I got back from recovering and was going to post when I was unable to get up, or stay awake. I don’t know if it is because I seem to have new pain levels and a fever that comes every day or what but it is seriously annoying. Nothing messes up plans worse than, “Oh, yeah, I’ll sort my pictures once I take this nap” and end up waking up a day later. Plus with the fever, I have been having some trouble recognizing people around me (Lucidity is a gift, treasure it!).
Then I wake up yesterday paralyzed, which is same old, same old, but my care worker asks if all the fans are supposed to be off. Wha? The power was off. And when I was able to call, they said my power was terminated. I know nothing about this, Linda is at work and they are talking about several days to hook up. I have 4 hours left of batteries for oxygen (which I have started using to sleep, as it does help), and I can already SEE my hands and arms getting larger, and my heart beat increasing due to heat. So I am pretty terrified. The manager says that I can ‘say’ it is a medical emergency but they won’t turn it on. I don’t know how we got disconnected, they say they called on the 20th, the day we were away. I told her that and she said it was automated and they don’t need to reach us to turn it off. Okay, fine, I have some savings left from paying everyone off after the auction, I will just pay it off. She says it is the two month bill of $120 (turns out running air conditioners all the time in winter is expensive: the air conditioners are tax deductible but the cost of running them isn’t). And I can cover that but I explain that I can’t get to a bank as I am in a dark apartment (with all the sound proofing up, remember). She says, well, you would need to pay the ‘rehook up’ fee as we didn’t pay. Okay, I am expecting like $50, which is what the phone company charged for hookup. No, it is $140. $140!!!! Seriously, and this is why BC-hydro has a monopoly. Okay, do I have $260+, I don’t think I quite do.
But as she explains, even if I pay today, I won’t get power today. I explain the medical issues and she says that doesn’t matter as ‘many people say they have medical issue in order to try and get it turned on faster’. Linda arrives home and it turns out that the whole thing is a screw-up. She said, we needed to pay. We did. Linda has been paying the bills but in case of going to the hospital in the US, she held back the payment for two weeks until we got back as we are billed for two months at a time. And the ‘you would have received many letters’ and ‘you owe since Sept’ they told me (which sent me in a wee panic tailspin). Not true. Linda had missed a payment last summer/fall and set up a payment plan with them and paid extra each month until it was paid off. Yes, the weeks when we had no money for food, we would be a few days late, but that was it.
PLUS Linda paid them as soon as she got back. She already paid them on the internet. The manager says that BC-hydro does not process internet payments for 3-5 business days. Fine, Linda will pay over the phone with the Visa we put emergency money on. No, they don’t take credit cards but use a ‘third party’ which charges 15%+ commission and they don’t process THAT either today. I ask if she will turn it back on without the $140 since they were wrong, we had paid, and there was no message left and no notification from them at all about discontinuing service, just the regular bill (which they decided to turn off, I am guessing because each time we missed a week we got a strike and with a $140 rehook charge, probably it is more profitable to turn off people than to keep them on, so we got bumped into the ‘turn off after a few days’ group). No, she won’t waive the fee as even if we didn’t GET the phone call, the automated computer made it (that’s right, not even a person or a verification of connection).
She decides to do us a ‘favor’ which is that she will ‘move’ the $140 fee BUT we have to pay the next two month bill in ADVANCE. So we can get hooked up BUT we have to pay $140 PLUS the two month bill before it even arrives and do it in like seven days or they turn us off again and charge another $140. Gee, it might appear they want these crazy hook-up fees. But the main problem is that I am running out of oxygen, the apartment is heating up and I didn’t get rest as I was ill the night before and now up early due to this.
I am happy that Linda has been doing the right thing, paying them and that it was a mistake, except they won’t admit it (3-5 days for internet processing, seriously, Canada has taken over the Soviet way of doing things as slowly and horrifically as possible). But we need power. No go, they say the trucks COULD come but it is ‘first come, first served’ even if they turned it off when they shouldn’t have. I get on line and start explaining how I can’t go to the hospital as they have central heating and I had to LEAVE the last time due to overheating and going into the kind of lethargy catatonic state of heat stroke. So I can’t go to the hospital tonight, and I passed out a few days ago due to overheating and 911 was called. I try to explain a bit about my disease and the manager says that only due ‘to the terror I can hear in your voice’ does she believe I have a medical condition and will tell the people in the trucks to TRY and reconnect me in the remaining FIVE HOURS in a city that is so small, you can drive anywhere in 20 minutes.
But first, we have to take out ALL of our fuses ‘just in case’ so that a worker doesn’t get hurt. So we won’t know when the power goes on. And they won’t tell us when it is done, we have to call them. Except no power on the phone, and Linda is driving to the library to make phone calls. I would think for $140 they would do something in terms of service, like a phone call, but no, maybe that is the $180 hookup or something?
So we are told to call them back at 3:45 because ‘we don’t like to work past 4:00 pm’ (I am kidding you not, that’s what they say – forbid a lighting storm knock anything out at NIGHT or anything).
So we wait. And Linda drives off and calls. No go. They say call again at 4:50. She does. The guy say, no, it hasn’t been hooked up, maybe tomorrow.
Meanwhile, for the past five hours my heart rate has been 130-150 because I am literally shaking in fear. I have no place to go that is climate controlled, my body is exhausted, and the heat changes are already working on me. Plus all the savings we had is down the drain thanks to the ‘reconnect’ fee and so the feeling of things getting better, Linda working, a trip I may have only been able to go a few hours a day to the Con but it was still pretty great. I was living life to the fullest, and sometimes that meant sleeping a lot, or having a fever, but it also meant talking to people and enjoying little things like how easter egg mini jelly beans were on sale and I went FOOD shopping with Linda to help her buy food for the first time in a YEAR. I love doing chores. I LOVE IT. I can’t do them often and I have to stay in bed afterward but I love doing normal boring chores, which now is like a treat. ‘Wow, can I really wash the dishes!’ (actually since that turned out VERY bad last time, I don’t think I am allowed that anymore, but I might be allowed food prep).
And what am I worried about? I am obsessed with the fact we bought this food in the US, including inexpensive (compared to Canada) pepper cheese, and fresh salsa, and Linda brought back Spumoni ice cream as it isn’t in Canada….ever. And now all I can do is look at the freezer and think of it melting less than two days after we get it here.
That, by the way, is an aspect of temporal lobe/frontal lobe dementia, the fixation of small things connected to the senses. So the memory of a smell can be overpowering, and more important to me than what is going on in front of me. Because of that, thinking of Linda being sad is worse than anything, and thinking of her being sad after getting the ice cream here and having no ice cream is more than I can bear. I can’t really understand $140 – which is why I paid everyone off and gave away the rest of the money to Linda in a secure savings that I can’t touch. Because if I want ‘animal crackers’ for example (and I like animal crackers right now – they look like ANIMALS, isn’t that the best thing ever! And you get to eat them. Plus they are make of arrowroot.) I would buy 20 or 40 boxes. Because the taste overpowers me and I can’t understand 20 boxes really except that I should be able to have a few animal crackers in the little box which is like the Barnum circus train car every day.
So on the one hand, scared of how to not die, and on the other very sad due to ice cream melting. So I ask Linda if she can please, please call BC-Hydro and ask them if a medical priority was ever put on our re-hookup at all. She does at 4:58, and the woman goes into the file to look it up and says. ‘Oh, you are connected.’
‘When was that?’ Linda wants to know.
‘Half an hour ago.’ (so before Linda called 10 minutes ago when we were told it was definately NOT connected, the Hydro company computer had it logged and recorded as hooked up, be we didn't know as we were in dark due to taking out every fuse).
The lights come on. Our savings are gone, but the ice cream is saved. Linda worked today and will work six hours each weekend day. And it turns out she gets paid for the work she did before we left, which including the whole day just before we left. So we have paid our Hydro until (whatever two months are plus two weeks from now). And we might have a bit left over. So all is not sad.
AND….I am having a birthday party. To which you are invited. It is my first birthday, I think. My parents thought that birthdays were evil as they promoted vanity and stuff so no cards, no gifts, nada. And I have never actually planned a birthday celebration before. But this is the time of living and I am alive. I want to live each moment, instead of wondering where the moments have gone. My party is on May 19th because if I hadn’t been born, I wouldn’t have meet so many really cool people. Plus I wouldn’t have been able to travel and live on four continents, and have met Linda. I am also getting Linda a present, which I have saved for, which is a surprise, except Linda calls it ‘A major many-birthday present’. But as she is looking for the full time job, and doing all the work, the caregiving, the job searching: I think she needs something fun that is all hers.
So that is why I have been silent. And now I hope to resume normal communication. Actually I want to try something else.
Despite the pain and despite the fever, I look at myself and think that I am not really doing things, or enough things out of love anymore. Yes I have pain, often lots of pain all the time. Yes, I have nausea most of the time. Yes, my body is changing and I am helpless. Yes, I have fevers every day. Yes, I am often frustrated by the insensitivity of others, or my own helplessness (the manager at BC hydro kept saying, when I talked about pallative and the need for oxygen, “Oh, I know how that is.” – really? You know having to choose between food or pain patches or electricity? Almost certainly not: but it something people say because they want to say something instead of ‘Oh my god!’).
But I realized that I wasn’t spending my energy doing things out of love. Leaving comments influenced by pain and frustration is not part of love. Blogging posts from helplessness, anger or pain is not love. And the more I am influenced, indeed it is an emotional giant wave that washes over me because of the losses in my brain in the frontal lobe, the more I need to take care to ensure that I act and write out of kindness and love. I have, over the last while, done comments and other communications that were out of a place of frustration, fear, and isolation. And I apologize for that. I don’t apologize for being frustrated, or angry, or isolated, or afraid, or talking about that, but for pushing people away because I don’t think they will understand. I apologize both for judging how others see things when I can’t know that and for acting out of anger, writing out of anger or just a desire to show I am ‘right’. Who CARES if I am ‘right’. I don’t, because worrying about who is ‘right’ gets away from what is important, which is ‘Is is good, is it kind, is it helpful.’
I want to write the truth or as close as I can because I think it will be helpful to others. I have even stopped swearing, for most of the time. I want to stop the triggers that continue the anger or frustration. When the manager on the phone told me that even though we paid, and even though we were never contacted, we had to pay the full amount and even then, we likely wouldn’t get power.
I said, “So we did pay, but you are charging us anyway, and we shouldn’t have been disconnected, but now we have to pay $140 and I am physically suffering, and you are saying I might not get power because you think I might be making up about having medical conditions?” I paused and said, “I don’t understand….that doesn’t seem very nice.”
She was silent for a long time because I think she was so used to people yelling that didn’t matter and she was so used to telling people the company line that it didn’t matter, that in jobs like that often the people the managers talk to are dehumanized. But I didn’t yell, I just asked if I understood what she said and then told her that those actions didn’t seem ‘nice’ and I couldn’t understand that. And honestly, I can’t. I think BC-hydro should do things that are nice. I am glad they hooked us back up. I wish they had called to tell us, and not said we weren’t hooked up instead. That wasn’t very nice either, as it felt……hopeless and icky. Like it was a never ending Limbo.
So, I can now write about the trip and about Jo Chen and how hard she works and about seeing Chi and Speed Racer face off in Cosplay chess, and seeing the winners of the Anime Music Video festival (which I recorded for everyone, and will upload, as I have the energy).
But I will also write as much and as well as I can about mental dementia and emotions, the ups and downs of it, the panic felt when I look for a plushie in the middle of the night, but I haven’t had it since I was eight. It is what I experience, it is part of the disease. There is the disease, which the more I write about the intimate stuff, the more I get ‘not nice’ comments. I get comments on my weight (which I can’t control and has nothing to do with eating), on how I see the world, on when I am vulnerable and when I am scared. Each time someone judges me, or tells me to ‘work harder fatty’ or assumes to say things to me which only Linda can say, because only Linda is here in the good times and bad, and holding my hand, and thus knows how to talk to the confused child that appears without scaring or hurting her – every time, I hurt (and it happens most post). But having others hurt you because it is easier to want the person I used to be instead of getting to know who I am now, that seems to be part of a prolonged terminal experience as well.
I can’t change the dozens to hundreds of aspects of my disease, nor do I want to be ashamed of them. But I can try to challenge myself to write what is true instead of what is easy. To hide what the bad times are like…that is easy. To not set tasks for myself so that I don’t ‘react’ is easy. I don’t want to do easy in this anymore.
Every day I live life to the fullest. Every day I push myself to do more and be more. And every day I have emotions ranging from despair to amusement, from simple quiet joy to the times during the day I feel the pain creeping over me, the fever making my eyes burn, and I slump against the headrest, and just concentrate on making it through the next breath, the next ten seconds. And then, after I while, I take it all, and I try to push it aside and see what I can still do. Every day.
A video dedicated to Linda: To my partner, we saw the lava, we did the 10K's, everything people said was impossible, you were there, knowing the risk, seeing me spit blood and letting me do it anyway. If you weren't beside me, or waiting at the finish line, there would have been no point in finishing. For without you, a mountain is just a mountain, a forest just a forest, not a secret joy we shared. We made a pact, you and I. And because of that, I lived. I will keep living every day, because now, every day IS the finish line.
I recommend watching it on Youtube in FULL SCREEN (High Res too!) HERE. You might have to adjust your Bass a little though as they don’t seem to do the complex bass well (or I don’t!). The song is We made a Pact by Hey Rosetta! And yes, I did write them for permission to make this video with their song. Very cool Canada group. Lyrics following
Lyrics from the song We Made A Pact You, You and I made a pact A deal that as we lay dying We'd think about eachother then And smile as we're taken in
I, I listened like a little child To the story of your earthbound pilot he plummeted so violent A parachute not opening And rushing to oblivion He broke into that knowing grin
And I, I think about that a lot Cause a lot is what i've not got And a smile is what I least expect In the clutches of this darkness
You, You I was surprised to hear Your birdsong velvet in my ear The phone broke its silent stint But I pulled the cord and I needed it You billowed like a bowl of silk And slowed me from my ruining
A picture from last night. My head resting on INDY’s headrest I am passed out and not breathing. I am wearing a eye-patch as during my conscious states my eye finally had opened but the image had not integrated in my brain (just garbage). I am my sleepwear, which I lived in much of this week. On a 3 or 4 setting of oxygen and ‘Rabid’ my squirrel is on my lap. If you want to know why I call the squirrel ‘Rabid’, he tends to vibrate at very high speeds, is easily bored and well, look at those EYES! My fingertips are purple and my entire arms and torso is in secondary Raynaud’s (I lost consciousness due to lack of oxygen in the brain). I had pushed the panic button because I could not call Linda, without oxygen to my vocal cords. My heart had just stopped long enough to cause a major problem of loss of oxygen to my system, and I would soon need reviving, so I pushed the button while I could.
People see me with squirrels. People see me doing things like going to lava. And yes, my hair is falling out and I look like crap and I am visually ill an on oxygen but I am still out there doing stuff! Right? Wrong.
From ‘Anticipatory Grief Package’: A Patient’s Perspective “It is important for people to pace themselves and save their energy for the activities that are most important to them.”
I spend 99% of my time looking like this (the unmoving paced person), feeling like something scraped off the side of highway that stinks and sticks. I am in INDY, supported in my back and body by the Wheelchair INDY or the hospital bed, with head support. I do that so I CAN send postcards, and so that I CAN send emails and packages. I am now in constant oxygen deprivation, low saturation levels and so I have to focus and stay focused to get what I want done. Like blogs and like going out and feeding squirrels. This is my life.
“Loneliness increases as family roles change and the patient becomes more dependant on care.” Well, why don’t I continue as I was in Hawaii? Well first off, I didn’t have much longer that I could have lasted in Hawaii, and have been bleeding from somewhere, nosebleeds, spontanous bruising, anal, oral, lung bleeding ever since returning. I hope to build up reserves, and I am happy I went to Hawaii but there was a calculated cost beyond the financial (which cleaned us all out). This is another picture of me, here, I am not sure, maybe in pre or post seizure as my eyes seem open but rolled back. I am on the face mask, continuous flow oxygen at maximum with a ‘rebreather’ mask to increase the percentage of oxygen. See, I could BE in Hawaii because I had two people to bring me back from the edge of death and they did, they did many times a day. I have permanent damage from the trip, and I am LUCKY to have it limited to the areas it is. It was a great trip. But when I only have one or two hours of care a day, then trying to be at that level of activity is a good way to fall over due to lack of oxygen and stop breathing. And when Linda comes home four hours later, that is still how I will be. I know that because every week, even without 24 hour caregiving, I still have to be resuscitated or assisted in breathing, in stopping a seizure cycle, in regulating my heart about a dozen times a week.
You, the reader, you get a massive pain spreading across your back, or in your chest, it is hard to breath, it is spreading down your arm. You look down and you see a hand that has purple fingertips, and now blue fingertips and purple to the first joint. Someone calls 911 and you go to the hospital. This is a MAJOR event in your life, this is a heart infarction and the next one is going to be if not lethal, then will likely trigger a stroke. This is an event people often experience ONCE in their life. When they die.
I experience that almost every day.
After the squirrels, after the nice pictures, and the eagle, when Cheryl went home; I had gone without much sleep and pushed myself without reserves. Not low on reserves, but no reserves. So my legs stopped, and my arms. I sat there in INDY and waited for wetting myself. Linda was exhausted, my fingers were dusky and turning black, my thumb was black, my palm was black. That is how bad my circulation was. Linda got me into the bathroom and on the toilet. I had retention (I was too weak to trigger the muscles to allow me to pee – if you are older, these wear out and you pee yourself, if young sometimes, this happens, you are stuck, until it backs up into your kidney). Linda was too weak to be able to move me. “Beth, you have to help, PLEASE, please.” she begged me.
I couldn’t. I couldn’t move my legs, my hips, my arms. I was barely hanging on to conscious. I had been expending energy to hide the amount of care I needed. Part pride, part love I thought. Now I wondered if leaving Linda with an unrealistic idea was love or not. And when the reserves are gone, they are gone. So, I am stuck on a toilet, she is exhausted. What now?
She went and slept. We had, she had, NO ONE we could call. My parents response has been a combination of distancing and pretending that everything will work out so long as they don’t see it. We were alone. She gave me a drink to drink and when that was absorbed in 20 minutes I had enough strength to help drink the rest of it. Eventually I peed. Two hours later, she was stronger and so was I, and together we got me into bed. We also used a word to look into: Sling.
The amount of energy that most people expend making a nice Sunday breakfast is what I have for a week or half a week. That’s why Linda takes pictures of what I do. So, yeah, I’m really ill. REALLY ILL. Now does that mean that Hawaii was it? The last hurrah?
No.
I am a calculating and ruthless bitch. Because my opponent is Death. Death feels no remorse, no feelings at all. There is no sorrow at taking me too soon. So what if I want what other people have as a sign of adult: understanding mentally, a job, goals, dreams, friends, to be treated as an equal? So what? If I ever miscalculate and I have, and Linda or some person at a place where I am usually banned afterward catches me, and I end up in hospital and that’s a mistake I can’t make again. So it happens right now I have minimal medical care. But I have oxygen and pills. I have a computer and wheelchairs. Sometimes I have both eyes, sometimes just one. It is what it is, and I have to win anyway.
So if it takes me 40 minutes to get out of bed, and it does, most days, takes 10 minutes to get a hand moving and under control, then that is what it takes. And if I miss the wheelchair, then I drag myself. Because that is what it is. This is it: life. There is no replay, there is no retake. If I want to live, then I have to keep going.
Most of the time I grin when I am in pain like when your skin is peeling the next day from a bad burn, a real bad burn. I grin because someone just told me that “Oh you won’t be able to take your wheelchair...” As I roll past them. The amount of times I have calculated the odds of just surviving getting to my pills in time, something like using up three days worth of energy to show some AB person who articulated that I must live in the box is nothing. It is so nothing, I give it a fierce grin.
I think back to Fredrick II, or ‘Fredrick the Great’ in Prussia, who grabbed Silesia from Austria, starting wars lasting 20+ years and resulting in the ‘Seven Years War’ which pitted the small Prussia against France, Austria, Russia and every other land power. Fredrick, one of the last great leaders to fight as not just the King but the General, in the field of battle, faced odds of 2 to 1, 3 to 1, French Armies, Austrian Armies and he won. Because he had to win. If he lost a SINGLE battle his small country was not doubled in power which Silesia would do, but lost. Only Britain was helping then financially. In 1759 it seemed that everything that Fredrick had fought for was lost. 47,000 Russians beat 26,000 Prussians; the French forced the surrender of Prussian Troops and Fredrick lost half his army in one battle, his worst defeat. He considered giving up and abdicating. I consider giving up. Giving in to the pain. Not coming back when they push and prod me to ‘breath’, and I start to follow that, but I do come back.
Fredrick considered suicide. And looking at what kind of death I have in front of me, I consider suicide a lot. It is not pretty, in the same way I am not pretty. I was never beautiful, but I was pretty, a strong woman and cute in my own way. But I won’t look like that again, I won’t be getting stronger. The arrow has pierced my breast, the saber is thrown from my hands. I was looking at pictures of me fencing last night and my goodness the power I had. Fit and strong. But that was then. Now I am mortally wounded. And so that is where for most the story stops.
I am not most. Nor was Fredrick. He went down among the people, and raised another army. The next year at odds of 3 to 1 Fredrick won, but the battle raged on, literally the entire continent of Europe was against him. And in the next year Prussia lost its last port to the sea and thus help from the British. Everyone believed that Prussia’s end was here, the army down to only 60,000 men. And then…..again, considering suicide, Fredrick found out that the Empress of Russia had died and Peter III ascended. Now Peter III LOVED Fredrick, because Peter III thought he was like a hero from a storybook, and in many ways he was. A King who risked everything for his nation, who every year took on the worst attacks and won, who faced the worse conditions and when it seemed that wounded in so many areas, Prussia was done, Fredrick went to the countryside and showed the people that THEY are Prussia. And he rose again, in front of a victorious army. Peter III withdrew the Russian troops and got Sweden off Prussia’s back and so Prussia took on and won the Austrians and French. It was the miracle. A miracle that had been hard fought for.
This did not last long as Catherine, Peter III’s wife (know later as Catherine the GREAT) thought her husband an idiot and killed him, then ascended the throne and settled the war, having everything return to what it was BEFORE the war. Prussia remained, Fredrick remained, and Silesia was part of Prussia, part of what would become Germany.
So, some interesting history, so what. The so what is that in two hours, after spending 4 hours with a doctor, and up late last night ill, I am going to badminton. Because at badminton I sweat, and if I sweat another week. I live. Or my chance of long term living increases. My chance of going to New Orleans increases. And heaven those, including the parts of myself screaming, “No, no, let us rest!”, heaven help those who try and stop me. Because I haven’t exactly got over into ‘acceptance’ yet in the grief cycle.
One of the reasons I was at the doctor was medication, including more heart medication (we are now MAXED out Ms. Heart, okay?!) and florastor, my probiotic which is a prosthetic intestine for me. We are down to 12 days of florastor and then, though I am malnourished, I will have no way to absorb nutrients. That is on my wishlist. And unashamed so, because if I have to beg in the street…I have a cup. Yes, the needs seem high now: another wrist support and a book or something for Linda to have down time with. Linda, who alone, waiting for the help from Beacon and VIHA has not had a night off in over six months. She is always and ever there for me. I wish I could cradle her. I wish I could give her rest. Give her a weeks vacation. And I can’t even give a book. We need wireless phones (because sometimes like I couldn’t get off the toilet, I can’t get out of bed to let the ‘caregivers’ IN), Linda is figuring out which ones, and then they will show up on the wishlist. By Nov. 2nd, I have to sign up and I am signing up for Boxing because the longer I sweat, the more my skin, the largest organ in the human body, heals. And I need that. I am also signing up for badminton and volleyball. I have no money to sign up with. We found out today that I need to get oils, as my body can absorb the oils of the vitamins it is malnourished in having while it cannot absorb the vitamins. Boxing is $55, Volleyball is $45, the oils I don’t know. To some it may seem little to some it may seem doable, this week it is…….yeah. If you want to help, go to the blog, A Girl's Gotta Fly and email Linda. Because I can't REMEMBER, I don't understand the math things that well so she does that, and I try to focus on the surviving (and the flying!). So you can email her over at Girl's Gotta Fly if you are interested.
I am hoping, but I am not asking. I would if I could ask for help for Linda. Help her, but I don’t know how. Come over and watch me for a night, help me with my pills. But that is impossible for most if not all. And for money, I know how many people are having tough times. And look at me, I just went on vacation (a vacation that extended my life from months to over a year - survival). And in time, I will have resources. But now I don’t. I have no income and no health to generate it. And yet, I sell on Amazon, I will sell on ebay, I will create a nest egg and have that emergency money. It is just I kind of used emergency money on loot for people in Hawaii (I was one of those people, I admit it), and then with Tall Girl closing. I would not have the PJ’s in the picture at the top if I didn’t go and get them at the sale, that is how little clothing I have. I am using the same shoes I had when I was fencing.
Enough said on that, because I think I know that those who understand realize I am grateful for friendships, for all the forms of giving, which include even reading and try as much as I can to reciprocate, because that is what friends do. I just know that I am going tonight and I am going to boxing on Monday, I just don’t know how. And I believe that in a week or so, I will be able to eat because I have the probiotic and oils I need. I believe that. Because if I don’t live, then I can’t do what I am meant to do, which is be there for as many people as I can, as many as my energy allows.
I die, I am brought back, I am wounded and bleed, I am in pain and struggle, spending so much energy to survive so that I might sit still and save the rest. I save it so I might spend my energy on others. Making sure that the others who feel the ‘alone’, others will have some way, some hope to get them through the winter. And I will help them find that. I will be with them. That is the other 99% of my life. Surviving on the edges. And sometimes it means eating ashes, like sitting on a toilet waiting for someone to be strong enough to lift you. And sometimes it means dragging yourself. And sometimes, it means getting a letter saying, ‘Your letter/gift/emails made the difference……’
I have had a headache for most of three weeks. I wasn’t sure how to start this so I would start with that, a binding headache, make your eyes bulge out, the back of your head blow out but held by hair and skin headache.
For me, the entire day is a racing against time, against sleep, to try and get things done. There are people who need caring, and I do care deeply. I cry for others because I don’t know how to cry for myself. I know what it feels to be alone and pounded daily, to have acid pouring down from people, from faceless organizations, raining acid. I want to save anyone from having to feel what I feel. I act, I reach out so that no one will ever be me. Never like me. Because I don’t know how to stop the pain, and emotional pain makes my own body ache, the bones old and brittle, the body ripped apart and set on fire until if feels like the skin holds only a shell and smell of ash. I want others to smile because I rarely do.
I was to see a cat on Wednesday, but that was cancelled by the cat owner. I don’t see people. I have not had an eight hour night sleep in over a month, or a six hour night sleep in over ten days. I am not getting better, as I require 11 hours sleep a day or systems will fail and the most common is oxygen. So it fails, and my muscles cry from oxygen deprivation. Because the body is a survivor, it rips oxygen from anyway or any part it can, from muscles from organs, from the structure of cells themselves, leaving them broken and oozing. The pain it leaves is exquisite.
I cannot remember a time when I did not lie for a hour or more in pain instead of sleeping, where I did not wake after two hours in pain: the pain that would make me pace or walk to endure it. But I can’t walk so I just writhe in bed, and cover my mouth so as not to wake Linda. At times, when I can’t stop moaning, I have begged for a gag. I cannot stop suffering but that doesn’t mean Linda has to.
I have chosen living because living is choosing. I try to clamp off my body, which shrieks pain in my bones, my joints, my muscles, my skin, lungs, heart, organs every minute I am conscious, and often unconscious. As I was recommended by USA specialist and Canadian doctors to have better pain killers in April but my wait for an appointment for the pain clinic was cancelled. So the seconds pass in pain, 1, 2, 3 until 60, and the minutes until 60, and the hours, and the days, and the months and I am still in pain. If I did not have pain, I would not if I was awake.
Here is a dream I had recently:
I was a detective, and this man was in a frenzy because his wife and baby were missing, and off he went with his gun. In trying to find out the solution I ran into people, one shot me in the shoulder, another stabbed me, and another broke my foot. But I found out, and I found the man who had taken over an office meeting room full of people. So I confronted him, bleeding and limping on a broken foot, and in the way of dreams it was both the boardroom and his bedroom. He had set his wife and child on fire. I got the people out and confronted him, trying to tell him that the bones on the bed were his wife, and he had killed her. That is why she was missing. He set fire to the room, trying to block it out. So I stood in the fire, cradling a dead baby, burnt, the black skin sloughing off in my hands, slick from mucus and slippery, the face sliding off and showed him that the baby was dead. Talking to him while I burned, the flames obscuring my view. I burned on, and on, and even after he put down the gun I kept burning, and the pain of it, radiating everywhere woke me.
I lie there, the pain the same, and realize that my maximum strength pills for sleeping had worn off early.
Another dream I had recently was where someone take a sledge hammer to my hands and feet. These are not nightmares, not the burning, not this as I feel no fear, it is just, ‘Oh, I wonder how I will escape now that my arm is broken, I guess I will drag myself.” And then they used a hacksaw with my feet and eventually cut them off, and I thought only, ‘I wonder if I can escape on the stumps.” Why would this be a nightmare as how would a stabbing or shooting make pain more? Why would I fear someone making me feel what I live every day? I saw a movie with a plane crash and people were burning, part of their body on fire and they were running and screaming, even avoiding help in their screaming. I could only think puzzled, “Why are they screaming....that doesn’t stop the pain?” I guess, if they would show it, I would be the person on fire hunched over a desk, doing.
I tried screaming in the first while, maybe months, maybe a few years and some times I do scream from the pain but now, I look at my feet and wonder which toes are broken and then have a shower, what is the point?
I guess I am surviving, except that I don’t know if I have the most basic level on Maslow’s hierarchy of needs: love. I suppose it is hard to see the love when a hug puts the pain so high I pass out. When touching me sometimes makes me stifle a scream and a ‘sorry about that’. It is important to be polite.
I have been pounded emotionally on a daily basis for at least three weeks. I have had hope taken away. I have been turned into a non-person. My actions of buying, my desire for manga is a form of nesting I do....a last resort to find an escape, an emotion or feel emotions I don’t have, even for a time. The last time I had collected 25 DVD sets to watch, to make sure I was safe, but that didn't build a wall to stop the emotional pain and so tried to kill myself. And Linda kicked down the door, and later I tried to kill myself, and I tried to kill myself until I had a safe room with no way to throw myself out; where Linda could lock me in, with books and other things but nothing I could hurt myself with. And I had a contract on when to put me in the safe room.
But here, and now I don’t have a safe room, or a contract, just pain and a life without hope medically: no GP, no specialist, the approval for IVIG but no one will sign to say, "I'll give it." I went to the doctor and they would not look at anything, not a bruise, not a vaginal sore, they said, 'you need to go to the ER', they don't deal with me except for prescription refills anymore. I don’t get my medical treatment at a walk-in medical clinic but at a pharmacy. The rest just goes on, or rots, if there are bruises or breaks. Without hope.
I am so far from joy that I don't know how to even consider it. I’m sorry. I think I am a disappointment. I’m blogging every day because I said I would. But I don’t know if the phrase ‘better’ makes sense in applying it to me.
I still try to collect manga, even if I am too frantic or too much in pain to read it this moment in the hopes that I can find a place a space where I can and I won’t kill myself. Is that hope or survival? I cannot think of autumn and winter, of snow and rain and being inside and with frostbiten hands. I am not joking as much anymore about the indignities and pain. I cannot think about it because I am climbing mountains every day just to stay in the living and the struggles of winter is too much to think about. It is the alps and I don’t know if I can want to imagine things getting so much harder, so much more painful.
When I wake in pain there is nothing Linda can do. So I lie there until there is no skin on my bottom lip from biting and the pillow is wet from the tears that run down the sides of my face.
I want to fight for life, for living. If I have a disease so rare, then why not be the person who is also so rare in the statistics that I live on for years. Except I can’t imagine this winter. Except my heart and lungs were collapsing this morning. Except that I had help breathing yesterday, and the day before. Not help with oxygen but the breathing too. The pain of breathing is like running your little toe at full speed into an oak table. It hurts like that to open my ribs. And I have to do it, consciously, breathe in, try not to scream, breathe out. Until the pills kick in and I sleep. I wake 90 minutes later begging for more pain pills. I have given up praying for no pain, or even for death, I just pray that Linda can sleep.
We have a date for Booth-Gardner, though not the one we wanted, Linda’s post covers that. Which is why I am going to talk about deliberate suicide, life, my and other choices and yesterday. I wrote a blog post yesterday and then realized the post was a lie: because it was all about hope (so I didn’t publish it). Hope is NOT what I am feeling. I am feeling something between frustration and despair. Yesterday was spent, the entire day, doing things that were largely unpleasant, but also needed.
I had to get ready so that I could go to the lawyers and re-read my entire will, ask questions and sign, read my living will, upon which Linda will determine when I get to die, and the power of attorney. I am sort of a non-human legally now. I would recommend any person read any living will VERY carefully as there are many loopholes and since both sides of my family tend to like to kill each other off or tell doctors, "Oh they are in horrible pain, please give them morphine drip to put them in a coma" - I have to be extra careful. The lawyer aghast at the McClung family dinners where everyone before dinner ran around putting their names on things, pencil in one hand, eraser in the other as they erased the name of the sibling and put their name. Then at dinner (my Grandmother is still alive and would be at the head of the table) the siblings would yell at each other about how they put THIER name on the clock first and YOU erased it...etc. The lawyer said, "So, death is something of a silent taboo in your family" very dryly.
From there, Linda’s surprise was that we were going to my parents to borrow their dolly/cart in order for Linda to get the Wheelchair Ramp from Port Angeles. It was an exceedingly painful visit for me. My father had offered to care-give and I accepted, more as a way for him to understand the actual limitations of my body now. Pus Linda put him to work, moving a bookcase. That somehow unplugged my lifeline phone. Lifeline started calling the numbers to make sure I was still alive and my father was one of them. We were notified and plugged the phone back in. Apparently that wasn’t enough, Lifeline wanted HEAR me, know I was safe, so they wanted me to push the wrist button. I wear this bracelet at all times and if I push it within 200 feet of the phone, they sent paramedics. I have done this in an aura when I thought I was alone and was taken to hospital. Lifeline called us, they called my father and Cheryl I guess.
At my parents, my father was away and I watched through the windshield as my mother held on, refusing to release the dolly to Linda while she made a prolonged emphatic statement to Linda. Linda got in the vehicle upset. We had to go home now in order push the button as my mother did not want lifeline calling the house again. The 30 second call was annoying. The fact that someone, for a minimal amount a month wanted to make sure I was alive and safe, and that there was a safety net in place to keep it that way was irrelevant. The call was annoying. It should not have happened. Was I hurt? Did she care? I don’t know. I know that she didn’t care enough about me having my father called to come and check on me to put up with a couple 15-30 second calls. Though it was suggested she hated the reminder of what she has not ‘processed’: that she has a sick and dying daughter. Or as she said, “I did it with my mother, I’m not doing it again.”
My mother’s irritation that someone called her on the assumption she might care brought to me how there isn’t another human being in this city who would come and check on me. About 18 relatives and many neighbors but no one who either cares or wants the responsibility to see if I am on the floor and dying or not.
From there we went to a new walk in health clinic that was taking new patients. They advertised no wait longer than 15 minutes for walk in. It was an hour long wait and then 30 minutes talking the doctor. We will hold off transferring to them until we provide medical records and they say what they are willing to do (specialist referrals, treatments, etc) and respond to a letter of our concerns (like will they follow what Booth Gardner will tell them to do). Also we need to wait until we hear about the palliative program as all efforts, however minimal where I am currently, will cease once I transfer (by the way the palliative is a year long program, you can register up to three years in advance so it doesn’t mean I am going HAVE to die this month). So, now we are waiting to decide medically to stay with the devil we know or transfer with hope to the new one?
After all this I was exhausted so home to sleep and up then again, since now I now needed to break the pro-biotic wall that I created in order to stop the food poisoning several days ago. Between waiting and pushing it took about six hours and brought me to the point of exhaustion where I couldn’t speak anymore. That was a day. My ‘restful’ day.
So Booth-Gardner (B.G.), we have a date and while it is what we ALL have been waiting for, it is different things to different people. For those who want me to live: it is hope, regardless that it is slim and if dashed I will be emotionally crushed. For the doctors here it is direction on what to do, what tests to order, what to prescribe. For Linda it is the culmination of months of requests from DOZENS of places for tests, and mountains of paperwork. And it is a place where I lose my identity, where a life of stability is gone and instead of everyone had accepting my condition, and my degeneration now the medicos will ‘evaluate’ me all over again. Even if there is a very high probability that they will say that I have what everyone says I have: MSA variant (Cost $700). But this time I will have paid a lot to be told for SURE, that I am going to die. Can I emotionally withstand that? Can I deal with all the tests we are going to try and shove in at the last minute for them to tell me how soon I will die….my phobia and yet lots of needles? But this is the only path to hope, right, so I should be happy? Only they don’t promise hope, they only promise to take money. And people forget that I only have a 50% chance at best of living long enough to make the appointment.
With my life of ‘consistency and stability’ I was trying to save money for three things: Sakura-con, art books for the blog and Hawaii. I put up DVD’s on ebay yesterday, as much as I could concentrate and have energy to do and sold one. Last April I promised Cheryl that if I was still alive, I would go with her to Sakura-con. To me a promise is more important than living. To break a promise which has helped keep me alive is an insult to Cheryl, it hurts people’s feelings and that is more important that what I want. Someone depended on that promise, and so did I. I have been saving for some specific art books at Akadot because my memory is visual and so people enjoy the pictures on the blog. I had put up my ski’s for sale and was working to sell my bike to make money for Hawaii, and getting manga ready to put on ebay for Hawaii too.
But in plops Booth Gardner (B.G.) and suddenly I find (on Linda’s blog) that the ski’s I am selling and my bike and the money I have saved is actually for the medical fund. Now while I do contribute to the medical fund from my allowance and a portion of what I sell goes there, the ‘making sure Beth gives a damn about the future so she wants to take her next breath’ fund seemed more important. But it isn’t, or so I am told, compared to the wonders of medicine; which will tell me I am going to die.
Because it won’t be a visit, it will be a lifestyle. I will need tests before the visit, and the doctors will probably want to eliminate the anemia, the thyroid condition and the heart erratics all with follow up tests, maybe every month or every other month to see how their medical choices are progressing, then back for another visit. Time to try for a pacemaker or maybe some sort of treatment for Lymes, or Lupus, or IVIG, or anything that passes the brain/blood barrier as they have ‘had some success with some patients’ and then there will be tests on that and follow up visits. If I live. Where is Sakura-con in that? Where is Hawaii.
I asked Linda today what percentage she gave to me living to reach the end of April, and she said 50%. I asked what had happened to Hawaii, and the money we were raising, the tax refund money, the early filing. There was a long pause and she said that the timing wasn’t right and it would be late summer. “Summer, me, in Hawaii in SUMMER.” She amended that to make it clear it was more like fall. That would be a better time for Cheryl to have a vacation. Better for B.G. too. She got the book from D.K. on planning our Hawaii trip five days ago, and got the news about the date for B.G. three days ago and now we aren’t going to Hawaii.
I am being drowned and disappeared by the medical game that treatment, that appointments are the same as having more life. Right now there is little rest, and my life is NOT ‘stable and consistent.” My night care worker who told me she had ‘lots’ of experience with seizures due to her cousin told Linda yesterday she would fine not coming since she has no real experience with seizures, and hasn’t seen any since she was a child. Not a close cousin then. Plus Monday was her “day off.” So I have no night worker anymore, since I need someone who wants to make sure I am alive and sleeping instead of lying in pain. Not someone who thinks they have to stay up too much and this is their day off after all. My support is crumbling. I feel that E.F.M., that the fragile Beth, that the Elizabeth than needs to be comforted are all disappearing under this blanker of B.G. and the hope it will solve everything so lets just ignore everything until then.
That sucks. Because this isn’t just about me, as so many people have been excessively generous, and I want to thank you again. You have given to the medical fund, because collecting all those test and keeping me alive until I could get a date cost money. We personally have gone in debt further, on this hope of Booth-Gardner. And yet the highest percentage is a frustration that the Canadian Neurologists never did tests Q or R, or did a follow up, or just left ‘ideopathic’ all over my charts (meaning “Fuck! I don’t know!” in medical speak). So they have to make an educated guess and send me for the test, so more waiting, an more into the medico. Then B.G. does a follow up visit to start a round of treatments, and more tests after the treatments (if I am still alive) and then a visit to get an idea of my progress. Do you get the idea? We don’t have that money, and we are selling my book, and wrist bands and t-shirts and trying but I don’t have energy to put on 40 items on ebay (try 4) as having a shower IS my day. Linda is disabled and taking care of her IS most of her day. So we, or rather I will beg; I will beg on the street, when I can, and beg in the blog.
And that frustrates me as I don’t want to do it. These are people who are so kind that they gave me books to read, when I am too ill to move. They made the quality of life better when they had no hope of extension of that life, just because they cared.
But B.G. threatens us with HOPE, or the hope that HOPE of an extended life might happen....except that will cost thousands. Yet already I feel that we have betrayed the people who read here: they thought it was simple, give money and it covers my trip to Booth Gardner (except they forgot the transport and hotel and keeping me alive UNTIL then). So that I am so ill that the government and my advocate say I need a $23,000+ wheelchair or I will be too weak to move. That I need my body supported, my butt supported by a $1000+ cushion or I will have oozing sores, that I can’t feel. Only we can’t get it in the van, because we have to get a ramp: medical fund. How am I to GET to B.G. without the chair, without the other medical needs, of which we are still paying 80%+.
And all I can think is of all the tens of thousands that Linda will have once I die; because in an incentive for govt. managers to stay in government work, they doubled the spousal insurance with NO MEDICAL. Yeah, I am stuck for a thousand or two now, but she will have it when I die. So is it love for me to die quickly, before I burden her with life debt? Is my small stash of money for Hawaii to be taken, my $35 saved for Akadot, to be given instead to the maw of B.G.? No. I am not a machine to work for B.G.
But still, I am seeing what I have worked for pulled away, my art book fund, my Sakura-con fun gone and replaced with needles and the sheer terror of evaluation, since even when validated (that yup, you are dying quick), it never makes you feel GOOD.
Guess what, the NEW doctor I might sign with wants me to go to Bethesda, MD for special clinic there! We went with the Budget Option (in the US, $2,000 or $4,000 IS the budget option). And if they say I don’t have MSA, will they know the two to three auto-immune diseases in my body, the electrical heart problems, the rampant AV nodes (no operation scheduled), the cause of the anemia, the cause of the nerve destruction? Then there is the cause of the autonomic failure; and the cause of the diminishing ability to convert oxygen? Will they know any of this? Or best guess and treat?
So B.G. is good for one thing, at asking myself what I am losing, what do I want: I want to race in the TC 10K, even though that will hurt. I want to do a 5 or 8 K or two before then. I want to go to Sakura-con with Cheryl. I want to write a book. I want to go to Hawaii. I want to see fireflies again before I die. I want to make love to Linda. I want to have art books that I enjoy. Because my mental state is less than 50% of what is was (When I said this Linda only emphatically nodded), I like pictures. The pictures of the last several posts have come from Doujinshi from Japan or Doujinshi (non-commercial artists who publish their books but don’t sell in book store). I think they are beautiful. I want to go to Hawaii! All that is disappearing to (B.G.) and instead of being told ‘rest!’ I read and am told I must fundraise; so much every week. Even if I only have 50% chance of living, my life, though I am sick, weak and confused is to get the money raised for B.G.!
No.
Oh I will go to B.G. and be thankful of every single donation toward my medical fund. But it will not tell me what to do with what life I have. If I have to go to Hawaii alone, I will. If I am the only one to look at art books, stained with tears because everyone is acting funny like I don’t matter as much as the doctors who are to tell me who I am, then I will.
There are razor cuts on my arm less than a week deep. I don’t know why they are there. I know I am a self-harmer but I can’t remember WHY I cut that time. I see the scars of DEEP cutting from a month ago or so, and I can’t remember that either, or the ones before. I used to say that these scars were the story of my battles within written upon my body. Only if the author can’t remember……what use are they? I am wounded emotionally and cry and yet three days later I don’t remember. B.G. I will remember as it has moved in with us, an unwanted house guest. It squats there. In the same way the pain is always there.
I continue to DO, like visiting the new clinic and they have sort of accepted me as a new patient yet…I need to see if the pallative application works first and if it doesn’t, this doctor is a sports doctor and doesn’t believe in unneeded medicine. How does he feel about morphine? Fentynal? How many days and weeks will it take to find out; how many months has it been? How long in pain.
Yesterday I screamed and moaned from the weight of my body on my bed; I was so fatigued that moving me put me in shock. 21,600 minutes when I am awake that I am in pain each month, and I feel every single minute. It has been months since I have had adequate pain control. I scream from pain many days a week. I moan in my sleep; I have fevers from the pain, hallucinations. And yet, I go on.
Why?
B.G. has made me question everything about what it is to BE me. It threatens the work I have done with others to try and sequence; to look forward; to try and WANT things; to feel things, to have fun. I still don’t smile, but I am trying. B.G. put all that, even my lonely isolation in shadow, as it is all now secondary, is the feeling I get, to B.G. After all what is manga when I need medical treatment? When I could have a diagnosis? And I do, and I will go, and I need help to get there. As the new clinic head doctor said, “I am not sure if this clinic has the experience you need.” I replied, “I can assure you, that currently the province of BC does not have the medical experience I require, so that is NOT an issue to me.” What is something to read, or the feeling that might be enjoyment, or joy when I might live an extra six months on the backs and the cost and donations from dozens of people.
I think of those donations and think of the dozens of dinners out, dozens of little trips, weekend trips, surprise gifts they could have, for a 10% chance at a slight prolonging. I can’t ask that. And yet if I want to live I have to. I am supposed to want to live. And I do, but not in a way that makes others deny themselves. The more I see all that I am and what I and others have worked for threatened by B.G. (which I WILL go for the consult, however terrified I am), the more I feel that I have no choices. Some days the only choice I have is what manga to read, and I wouldn’t have that if not for people who wanted me to have a better quality of life. Choice is the greatest gift. Thus the more attractive a idea, suicide, that would give Linda all the money she needs, to give back to those who cared, to take care of herself, and which would end those minutes and hours pain and give me one choice again. I don’t want to lose Hawaii. I don’t want to lose Sakura-con. I don’t want to lose trying to writing a book (even if I have to re-read it each day to know what is what). I don’t want to lose a plan to see fireflies again. I don’t want to lose the (is it joy?) anticipation of getting a new art book. I don’t want to lose competing in a 5K and being more than just that person whose life is over. And I don’t want to lose the reasons I have for living. How can I do that and co-exist with B.G.?
I asked Linda what she thought was the best way to commit suicide if Liver Failure is so horridly painful (though I bet I WOULD get morphine for that pain). She said she didn’t want to play this game. I said, “It’s not a game.”
This last Friday, death WAS imminent, I came within a breath of dying, over and over again. I was kept alive by continuous emergent care. Moving my body at all put me into a state of convulsive shock and pain which lasted for up to 20 minutes. I literally had to be held upright, while I continued to work. I have two books I would love to do, love to know I had time to finish, love to have that hope, but I guess I am terrified at the cost of that hope.
I want to try all MY dreams. I want to rest and make myself stronger. “Resting when everyone is wanting the action Elizabeth because you KNOW it is what will make you stronger IS E.F.M.” Linda said. I want to be E.F.M., and sometimes that is resting. But sometimes it is not, but trying when there is no reasonable expectation of succeeding.
I cry from the terror from the thought of failing so many people if B.G. goes wrong. I don’t want to use death as an escape and yet, why am I thinking and have been thinking even before B.G. about suicide. I have worked so hard and so many others have for me to remember to think AHEAD, to plan for the future. And just because I am in pain 21,000+ minutes every four weeks, I want to throw that away? Sounds kind of wimpy doesn’t it. I don’t know if you know what it is like to scream, not a short and punctuated scream of pain from slamming a car door but one that goes on and on and on because the pain doesn’t go away. It takes you past the brink of sanity until you claw back and you force yourself to trail off into moans and whimpers. How many screams did that take? How many minutes while you were held down? And I can't take any more meds, that is on all the pain meds I can take. And that is a couple days a week, it gets that bad. But I go on, because living is important, Linda is important, the postcards are important (at least to me), Hawaii is important and I want to FIGHT. I have been fighting with the help, some in time, some in finances of good and loving people for weeks (I think) to try and relearn time, to learn that living and the future is good! That Future is worth fighting for.
I don’t want to betray them, or myself. But I am very, very scared. And I am genuinely deeply depressed. I am tired and a little angry at people wanting me to be at peace, or fly away. Know this, and remember it, not in one thing except unconsciousness from fighting in my life over the last several months has there been a moment I have been ‘at peace.’ I fight, or die. I fight, or give in. And when I fight TO die. That is sick. I want to stop that. I want to fight for Hawaii WHILE I live. I want to love the future. I am not going to ‘rest’ or ‘kick the bucket’ or ‘fly away’ or ‘be at peace.’ While I live, I BURN! Even when I die, I will burn too!
I want to care. I don’t want B.G. to take that away. And I don’t know what to do.
