Is it ‘Pain’ or is it ‘Just fussing’?

Often, on the web, or always, on the web, end stage people who do blog, even under another name get doubted, get people not really believing. Maybe the person is laying? Maybe it is all a set-up? Maybe it is for attention?

Or maybe you have never had that disease and been inside that skin?

And also, as the posts get shorter and the ‘style’ seems to change, more nitty gritty, less ‘FUN’, less about the good reads we had when we first started going to that blog, then people tune out, or worse, far, far worse, drop silent (or just post doubts).

But then, maybe the person’s life has gone from 20% taking care of a disability/disease to the ‘up in the face’ aspects OF nitty gritty. That pain levels, flare levels, will there be hospitalization, what kind of caregiver, is the caregiver changing are like a 767 airplane taking off directly above your car. And that makes them a bit more important than the cornbread recipe that people used to expect.

And of course, Pain makes you a bitch.

Well technically Pain makes you HER bitch, but not in a nice or ‘let call this sex” but ‘more like rape’ way. Then the world changes.

Because the human body has

But is ‘Pain’ the right word? Pain is defined as, “hurt or discomfort” or “mental distress” and has synonyms: ache, pang, smart, stitch, twinge

Okay, well according to that, I haven’t had pain in a LONG time. Like at least 700-1000 days, maybe longer. When I was untreated Bipolar II the pain I had which was like grey bones grinding made me lay immobile for up to 20 hours a day. And that was for 5-10 months. Which, considering Bipolar II is considered to have the most debilitating pain of the depressions, and that sounds like almost a manic state of joy to me about now indicates that depression pain (which is real, and hellish) is not a good yardstick.

Some of the most extreme literary quotes:

“For a second he remained in torture, as if some invisible flame were playing on him to reduce his bones and fuse him down” – D.H. Lawrence,

“Generalized racking misery that makes him feel as if his pores are bleeding and his brain is leaking out of his ears” – T.C. Boyle

And I am thinking, “Well, that’s kind of what it is like when it is GOOD, or tolerable.” Makes most of the quotes on pain seem like humor:

“The hurt I felt … was something like a thumb struck with a hammer”
“Felt as if I’d been crushed between two runaway wardrobes”
“hurts like gravel in your shoe”
“Bruised like a half-back in a football game”

So thinking, “Those lucky, LUCKY people!” makes it, since people tend to personalize more than empathize make me or someone like me seem callous. Except I have had most of those happen and they, well, I walked about 200 miles in boots that literally sanded my toes into blood. I would walk for 10 miles, then wring out the blood and let it drain out and walk again, up mountain and with backpack. My feet made, well, every long term hiker, people with thousands of miles of hiking, 30, 40, 100 day hikes feel ill, say, “I have never, ever seen feet that bad.” So I hiked in high tops, and sandals and let the blood run out. And now I look back and think, “If only I could bottle this last year, it would have meant nothing. (except maybe an infection and amputation, I guess – but painwise….easy, like a jog uphill).

I had a bad night. I don’t have any Lyrica samples. I don’t have a doctor who will move me up to Fentynal, and I am on 150% of the maximum of all my pain drugs (four different ones). British Columbia’s ‘compassion’ fund for Lyrica rejected a claim in two days (which is like a 2 minute turn around time in BC/Canada paperwork time): no money. The pharmaceutical company says ‘Our phones are not currently working”, and no one has samples. No doctor and no solution except: pain and fear.

Because, like last night, I could not move. I couldn’t move because my body wasn’t functioning. But I still moaned and mewled in my sleep. And I woke up every 75-90 minutes to scream myself into exhaustion, and pass-out/sleep again.

Linda, the times she wasn’t out, would say, “We need to help your pain.” And offer me water. The nurse line said to take me to the hospital. But she went out for a walk with a friend for a couple hours instead. She says looking back, she would have taken me to the hospital. I think it might have been some hope that sleep would ease pain. I have to be in quite several pain to moan, groan, mewl constantly the entire time asleep.

I don’t have a nice metaphor for you about what it felt like. I do know this, that I remembered an episode of House one of the times I was screaming for 5-9 minutes. One of the MANY episodes where he wakes up a burn victim or someone in a coma induced to deal with the pain so he could ASK THEM A QUESTION.

I remember thinking of that, while I screamed, sort of expecting him to show up and ask me a question, because a) not enough energy to move, b) screaming awake or asleep – perfect for House, M.D. And I remember those drugs he takes for his LEG pain. And I planned, as soon as I could MOVE to find Dr. House, and to take his medication away, and beat him unconscious before having a truck run him over, and then reverse over him and park……..for 14 hours. Of course, later, only AFTER I had enough pain medication did I realize that he was a TV character.

It just seemed that his view of pain from those IN extreme pain so perfectly summed up how people DON’T feel others pain. And quite honestly, will go to lengths to emotionally shield themselves to avoid doing so. There are no lack of doctors who know the pain I am, or hospital personnel. But “Not my inch, not my patient, I have a policy…, I don’t prescribe those drugs usually, yada, yada” (What if there was a truck parked on them for 15 hours? Would any of those policies change……..at least towards themselves?).

People are silent because ‘I don’t know what to say’. Well, except for: “AHHHHHHHHHHHHHHHHHHHHHHHHHHHH…AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH…AHHHHHHHHHHHHHHHH” (repeat with crying for five minutes, that’s about two seconds there), I don’t either. But I write about it anyway.

People stop associating (brother, sister in law, all other relatives, uncles, aunts, the 30 here in Victoria, the 8 in Vancouver, the 40 or so in the Prairies – don’t want to deal with it, don’t want to deal with caregiving). Friends, associates, online friends, and of course parents (who I hope enjoyed that second cruise in three months, and the trip to see my brother – I haven’t seen ya in, what? Nine months. Or had caregiving of even the most basic level for two years, not even a drop off at the doctors? And you were blocks away? Now THAT is what I call ‘CONDITIONAL LOVE’).

This is not uncommon, in the excellent book What Happened to Lani Carver, Claire is a remission of leukemia, going to high school, still the ‘sick girl’, always trying to be the ‘good girl’ and likable, always second fiddle to the ‘best friend’. Until being with Lani, and sticking up for Lani gives her not just a wide awake in peoples’ self interest delusions but also in facing and taking hard choices. One choice was to ask her stepmother, after a lot of bad shit has gone down,

“I asked her point blank, to her face, “Why didn’t you come to Dad’s apartment when I was doing chemo? Were you grossed out by me?”

“She told me she was very afraid of death, though she couldn’t figure out why – maybe just because artists are afraid of everything. She said that seeing me back then inspired her to make anonymous donations to the American Cancer Society, though talking to me to my face had been too much on her.”

When I read that a “It isn’t just ME!” light went on. Because here is someone who is supposed to be a parent, and there is a child: a young child, maybe 13 going through chemo by herself for two years and her stepmother just LEFT. I mean, just ‘wasn’t around’ but they made DONATIONS to the cancer society (ANONYMOUSLY!). Like the fear of anyone connecting her to her own step daughter was far, far too much to bear. A girl needed her, and she wasn’t there, because she was afraid. Not like Claire was afraid, right? No, Claire was actually a whole lot more afraid, only Claire had no choice, the disease made the choice, and this adult woman made a choice too.

Pain chooses you. At least the ‘hey, we are ripping up your body’ kind of pain. Which is the kind Torture falls under, or ‘Mutilation Torture’ because the reason it feels that way is you are never going to be that way you used to be ever again.

So people step away. What was the ‘passing out like?’ I asked Linda.

“Like a baby fussing for a while before…”

FUSSING?

I asked if a lot of babies sounded like that? No. And the moaning WHILE asleep? “Well it could have been a lot of things.”

“Oh.” I tried to breath, “Is that what you thought it was? A lot of possibilities?”

“No,” she said, “It was because you were in pain.”

“While asleep.”

“Yes.”

“Completely asleep”

“Yes.”

“And the screaming when waking was that like ‘fussing’?”

“I didn’t finish what I was going to say on that…” Pause “And I don’t want to, it was a bad example.”

And yet here is Linda, a compassionate, loving person who is worried enough to call the RN, and is told to take me to the hospital. Who knows why I am moaning in my sleep, and knows that changing the block of ice under the pillow might wake me up, and knows that the pain was more severe than she had seen, and she has seen a lot. But she does this this verbal dance. Why? She said if I am ever like that again, she is calling the Ambulance, and she SHOULD have called the ambulance, and yet, there is this dance of words, of ‘fussing’ and how the sounds while sleeping didn’t HAVE to mean pain, she just knew that they did.

Is it because there is no way for someone outside to ‘know pain’? Linda says she could tell I was in unbearable pain. Except I do bear it (Except House M.D. isn't a real person), I bear it this very minute, I have borne it for a week, a month, a year while insurance ran out, while GP ran out, while tomorrow was going to be the 'time to deal with it' until todayLinda is feeding me yogurt a spoon every few minutes because I can’t move anymore, or swallow correctly. So all the ‘good time’ to go deal with it is done. I am in pain, and so a bitch. And in four hours Linda tells me three to four times she is leaving, she can’t care-take and is going out again for hours, then when I call Health Authorities to get someone to come, she takes the phone and I am ‘confused’, but later she tells me that when any care worker comes she is ‘out the door that minute’.

Without a caregiver, I can’t eat enough to take the pain pills. Without a caregiver I can’t do anything except….welll, wait in pain. And so I am scared. I am very afraid. In telling the people at Health Authorities I am ‘confused’ it means they will not come, and may not in the future. I am sure she almost as tired of this as the person in the pain, me. I am sure she hates the pain as much as I do, and what it does to me, making me bitchy and bitter, tearful and scared, a right mess.

But her leaving me while I slept for a couple hours meant I woke, I screamed, I cried, and I wailed, all alone. Her putting on her boots to leave means that I may not eat today. And that this pain may never be dialed down 30% (because the pain is never less than 50% anymore, rarely less than 60% of maximum, and there always seems to be higher and higher maximums). I don’t laugh, or smile, or joke – and I wish I did. But when agony is behind and agony is ahead and the possibility of that doubling because I said something wrong, or she just got cranky, becomes too horrible to think about. And yet she is the one who IS here. When other people come, if they come at 2:30, I sleep until 2:00 so that they don’t see the ugly mess that is the majority of hours.

I think we all wish that those with pain so bad were just ‘fussing’: but to come out and write it about them, or say it says a great deal more about OUR need to run the hell away, than about what is really going on with the other person.

No one chooses this.

Care giving, or caring: that takes more than choice, it takes the power to hold on, even when it is hell and you are it. To be all that someone has, and they happen to be half insane, and stay or go, that is a choice we will all have to face many times in our lives.

Some pictures I want to add of the kind of daily body alterations which show you it is edema (the failure of the vascular system: solved by….um, a complete vascular transplant or death – too bad there are not complete vascular transplants, eh?) and how that can look so different every 10-12 hours. So no, did not just suddenly bloat up, it is simply blood/water that cannot leave, because though I am still alive, my body isn’t able to function with the circulation system it has to my arms and legs.

Fear: for caregiver, for disabled. And dying.

Spring is supposed to be here, and I think it is trying, though snow lies in the shadows and corners. In this picture Linda says the woman is celebrating the ladybug on the fence. Linda has an..um...interesting view of life sometimes. I think, like me, the woman is just glad to be able to get out, to know that growth is here. The earth turns, the earth rotates around the sun and in this hemisphere as we hurdle a bit closer to the sun it brings us to the annual time of growth. Planets can be pretty nice things sometimes.

Last year, I was getting ready for Japan; what a difference a year makes, eh? I have a book on the anime girls of different prefectures of Japan and I definitely want to find this one. Any place where you can get a sign saying, “Beware, monkeys may steal your clothes” at an onsen is an onsen worth visiting. The paper we were handed by the tourist association and JR which told us at Miyajima that if deer ate our passport or train tickets, they were not responsible. That seemed surreal and a wonderful joke. Then we ran into the German couple whose map HAD been eaten right off the ferry and had been lost ever since.

At Nara, where we not only saw a World Heritage Site (oldest largest wooden building in the world) and were chased by monks (to throw us out after Linda went Camera Whore), I learned the difference between feeding squirrels and deer. That when two deer who are fighting over a harem stop because they believe this object over here has food, you GIVE them the food, and fast. So that way they can go back to smashing their horns against each other. The only serene look I had feeding the deer was when my food was goneand I sat with the bucks that lost and watched the super-aggressive ones mug other people.

Okay, enough procrastinating, right? That was my rather lame intro to fear.

I learned fear the good old fashioned way, helpless, terrified, pain, the usual. But as Linda is finding out, fear can come to anyone. I will show you that in a bit.

See, we grow up and we think that we can't be reduced anymore to the states of fear: the helplessness, the dependence, the lack of choices, the knowledge that being alive is fiscally the worst thing we can be to those we love. We are ADULTS, we aren't little children anymore. How naive. We think we know where our sunny road goes, we have it planned out. The truth is, we don't know if there is a cliff beyond that curve, but this is YOUR road and you have to follow it to the END....regardless.

This is why individuals have petitioned for euthanasia. While I don’t think the people who FEAR ME, or those disabled like me, the people fear those who are disabled should be allowed to petition. But whatever your stance, if you are in a position where your income is fixed, your disease/disability is variable and suddenly change, expensive change is looming, then you are looking at options, bad options. You could be put in a sort of disability/old age prison system we often call nursing homes. You could literally bankrupt your family. You could be dependant for an unlimited number of years. And the fear in your gut, what does it tell you? You have never had days you said inside you would rather be dead than hurt endlessly the ones you love? Well, I have.

That we don’t have an adequate system to give a life, and yes, a death of dignity is the fault of all of us, as we are all part of a society that embraces the diseases which have the best chance, the longest remissions. Maybe after the several thousand strong run/walk for breast cancer there is another one of 10,000 people raising awareness for ALS, or SMA I&II, or many of the hundreds of things from RSD to Gillian-Barre which just strike and change your life forever. Leave you just out of the edge of society and vulnerable...forever.

I have fear everyday. I think it is part of disease, as it is common with those who have mental degeneration. Sometimes, I am ‘having a good day’ and sometimes I am not. And when I not, I am scared, or rather, I don’t know how to hide how scared I am at things and people. I have ‘good hours’ and ‘bad hours’. This is hard because I don’t want to expose myself, I hide it from Linda and Cheryl, just like my Grandmother is still trying to hide it. I’m not in control, not even of myself, and so any change can induce panic. But before I tell all, I will show you how fear works on BOTH sides.

See, this is me, maybe the me you never fully saw, only know the me of this blog. This is the kick-ass, so what, attitude I have/had, that I am going to overcome the world and I have the brains and the drive to do it. I AM larger than life, or I was, and when I good, when I was at my best, this is how I looked; full of joy, full of adventure, and saying ‘come with me.’

And this is what our life together was, it was challenging the world, it was challenging ourselves, because we had each other. We always had each other and Linda knew that if things got bad, I would do what was needed to get it solved. There was always a way, even if it meant working an extra job, even if it meant stopping a dream for a while, it was worth it for her.

And then I became sick, and recently very, very sick. Like I should be dead sick. And she has to watch that. I don’t. I don’t know how sick I was last month, or two months ago because my brain was damaged and maybe I should have taken videos but is that what I want to leave behind, a visual record of my degeneration? I know from the ‘my GOD!’ exclamations of health workers and health professionals that I am not exactly looking rosey. So for Linda, there I am, making a joke, and she can believe, fool herself for a while that THIS is our life. That is when I start to shake, because my brain is literally on fire. And when I have finished bruising myself, I lay there. Or rather I DON’T lay there. A body lays there. A collection of meat in the shape of a body. And ONLY if that body’s brain gets oxygen AND it breathes, if it has brain activity, will that body actually become a person, a loved one. One minute passes. The amount of time to keep the body alive shrinks. You/Linda call to the person inside (are they inside?), you yell at them, you touch them, you do everything the EMT's taught you and two minutes have passed, going on to three. You start breathing for them, because you are afraid. Because in a few minutes your world splits and you HAVE to have this person back, or face being without them.....forever.

And when that happens, when you see the person you love dying. And when it happens enough time, you get angry. Why you? Why this? Why? You didn’t ask to have to endure taking care of a person who you turned to in time of trouble who doesn’t even know your name. Why? And that anger comes out and they see it, and they are not having a ‘good day’ and they are afraid, and they cry and you feel horrible. In fact, at nights you listen to them breathe, or maybe after a while you don’t because you can’t stand how they stop breathing for a while. Eventually you don’t know how many times you have revived them, or helped them in bed as their heart stopped beating correctly change position so they could breathe again. And you start, as you see the progression continue, even speed up, to stop investing yourself so emotionally in them. And the partner, the person you shared your life with, can, on the ‘good days’ feel you drifting away, your face going blank, as you are already preparing yourself for the death. How can I hold on to you, when I am too weak to hold on to life alone? Your hand slips so easy from mine…

This image is from a show called H20:footprints in the Sand, from the poem about the two sets of footprints and how when things got tough, there was only one…..because God was carrying you. And then, as images flash a voice calls, BUT WHERE WERE YOU WHEN I CALLED?

That poem is for those who are hoping for the full recovery, who don't know the minutes of watching a morphine button, or whatever your hell is (and forget that up on the cross, when Jesus call....God WASN'T there). The poem is easy, simple. Living with a disability, a degenerative illness, is anything but easy.

I can only tell my story, and my story is that when I saw the movie Superman, the original, and he rotates the earth back to save his girlfriend, I was angry. Because why didn’t you turn back the earth for me? What was wrong with me? That was probably the number one question I had. And in the end, growing up in a Christian/Old Testament style church/cult the only thing that made sense in the end was that I WAS the sacrifice. Because in every old testament story, like Abraham about to kill his only child because God said to, or Lot offering up his daughters for rape, or King David losing his kingdom and his favorite son; no one ever asks the sacrifice. Their job is just that, to be the sacrifice, the cost that pays for what others have done. That is the cost symbolized in the Azazel: born, and then chosen by God to bear the sins of the people, to die, staked out, a horrible, slow and painful death. This I could relate to: to be staked, to be tied, to be hurt, to be told that I was sin. Soon, I would learn about pain, and fear, and what can be endured.My body as sacrifice I knew. So this is how I made sense of my life. This is why I tried to get God to kill me when I was 20 or so, to show me the face of God. I only learned that I could endure pain, more pain I thought possible, but I could not die. That to go forward was always opposition, or someone to stand up for, more abuse to absorb; and I gain my Doctorate in time to get a disease that destroys the brain. This is why I have no questions, because I am doing my job. If you have anger or hatred, send it to me, email it to me, yell it to me, whisper it to me. Because that is what happens, and the fear I feel, the agony is the job that I have been created for.

You see, I waited, and waited, through days and nights, and things so bad, and weeks and months and years that are best forgotten, if they weren’t written into me. I see as much like The Penal Colony, by Kafka where they are written upon me with a pen of steel as I rotate, only I never die. I waited, and waited, but a hero never came.
Today was a day of fear, lots of different fears: fears of the future, fear of being put in a home, fear of living on the street, fear of leaving Linda hurt and alone, fear of leaving Linda with horrific debt. The shining path? Death. I don’t fear Booth Gardner telling me I am going to die, I don’t fear being told I am going to get better, or that I can be better. So what that I won’t walk? If they can keep me awake with energy 15 hours a day I WILL get at least two jobs, I will write enough books to make the bookcases bow in weight. I have the demons of myself to exorcise, the feelings of failure, the feelings I made Linda suffer, and my parents, or father to whom I am a ‘disappointment’, my grandparents, my father’s father who never acknowledged I lived. I have demons in me and I am used to their weight on my back.

What I fear is being told, that they can ‘stabilize me’, that whether they understand the damage or not, this is how I will live, for at least three years more, just like this. We have no savings, what money we have to go to Booth Gardner we got from YOU – our readers. I am on oxygen. Linda has to get up twice a night to get me pills to stop me from screaming in pain. I am a cost of at least $15-20 a day. This is what I fear, that Linda will continue to be harassed as she was because I am disabled, because I am her partner and I am unable to defend myself. That she will be abused verbally and emotionally. That she will bear the weight and responsibility of a job and a dependant that WILL NOT DIE. But also who will not get better. That is my greatest fear right now.

For the rest, well, I have to sleep twice a day; so I have nightmares twice a day. And I am degenerating mentally. I also am disassociating. I started to HELP, to create the ‘counselor Beth’ for Linda, or the ‘Brainstorming Beth’ for Linda but once you open the box, then out comes the ‘Scared child Beth.’ I don’t know if it is part of the brain degeneration or part of my sexual abuse or just part of this hell situation but it happens. I just don’t understand. I am afraid. It is hell, for me and for those around me.

That is what I think many people go through or are going through. I don’t know. The problem is that Linda and I have both been battered and abused so much that we both have ‘regression days.’Which leaves the question, “Where is the adult to check why Beth’s hands are blue?”

My frustration: that after decades I finally conquered one of my devils. No, I was not at peace. I haven’t figured that one out yet, but I did WANT to live instead of want to die. I was able to look and talk about my past without out being consumed by it. I had a future. The clouds had parted and I was free. I wanted to live. For a couple of years, even the first year of the disease, I still had that feeling. I can't remember much of this last year. But now, I want to die; to free everyone from this horrible drama.

I want Linda to be able to move on. I want my job to be over, I have been staked, I have suffered, now let me die. Let me serve this last blessing. I’m not supposed to say that. Probably because it is the truth. I went to visit my grandmother and I saw myself in a few months, if I keep living. She was nice, but she was using all her energy, all her intelligence just to keep up with what or who was there, even if she didn’t know them. Was she scared, not then, but at night, I’ll bet. I am scared at night. I used to love the night, watching the night and moon pass over the world (I didn’t have bunnies to share snacks with), but now, I fear the night, I fear it as it is when I grow tired. I grow afraid, I have to sleep (have nightmares), I have to have a tomorrow (meetings, schedules: things I don’t understand where people will not allow me dignity), most vets I know treat their patients with more love, patience and caring than medical practitioners, or care givers. I fear them.

I know that it is likely that I will be afraid for every day for the rest of my life, however that long it is. I know that Linda, for many of those days, will have a tinge of fear, unless she builds her wall strong enough, locking me out. I don’t think she WANTS to do that. But I understand if she has to.

I try to find the minutes between the fear, the moments where I am surrounded but I have forgotten, or I can keep trying to grow or move forward. I sold a DVD today, that gave me a few minutes. I haven’t stopped fighting, I also haven’t stopped the job appointed me. Yes, maybe it is easier to fear when you are in pain, or when you have been abandoned by so many, when you have pain medication bottles with no refills, no GP, no where to go. But there are times between that fear. I am not paralyzed. I managed to write about it….in the end.

The real story: I die. I am resuscitated. How much longer?

I didn’t do the 8K this weekend. I didn’t do the 8K because no one, not Cheryl, or Linda or myself believed I would make the finish line. Believed that I was in sufficient condition to finish the race, and believed it was more than a 50% certainly I would be in hospital. So I worked, as I did for the last several nights, past 5:00 a.m. doing things like postcards or getting the blog finished (20 pictures, the last one). Instead of being honest, I gave you the posts of what I thought what you wanted.

I am afraid that people will leave, because no one, not even Linda or Cheryl can talk about the things that are happening right now. One of the recent days, Saturday I think, I woke too weak to speak, or move my head, or use my arms. I have to be carried into my wheelchair, then pushed to the chair in study and carried into that chair. What does that mean? It means that until I take a lot of pain medication, quadruple what I had a few weeks ago, I can’t use my hands or arms, that takes the morning. I can’t hold my head up and I pass out, and come back, then pass out again. The first Lesbian Sleepover had those conversations, but it also had more seizures, more grand mals in one night than I have had in the rest of the week combined.

And then, I think yesterday, I died. Or to be exact, I stopped breathing on my own for a very long time. Four minutes is enough for permanent damage. I stopped breathing for about twenty minutes. During this, my heart, very weak stopped and started. Linda, did mouth to mouth while I was unconscious, until Cheryl found the Ambi-bag. The Ambi-bag is for EMT’s to use until a person can be ventilated (a tube put down their throat and they put on a ventilator). I have had short periods of stopped breathing, I had experienced them earlier that day. Linda sleeps besides me, and listens as I sleep, waking as I stop breathing, and waiting until a time passes or I start breathing again. Many times, there is pain, or pressure, or a desire to breathe, but I just don't have the strength to breathe. This time, I would be brought to a haze of semi-consciousness, but all I felt was total exhaustion. I had no need to breathe: I only wanted to rest. I had no will, no fire, no fight, I couldn’t do it anymore. I couldn’t speak because I had no control over my diaphragm but at one point, with the air pumped into me, I whispered to Cheryl, “Go” meaning, ‘let me go.’ (Picture is called ‘Wreath’)
They brought me back somehow, and I probably tried to continue what I was doing. Later I asked Linda, “When are we going to talk about it?” She said we needed to go to bed right then.

My heart is failing, right now. Every beat, every minute, it is weak and does not beat consistently, and often simply just flutters, doing nothing. Without the heart masking pills, I have unimaginable pain (I would scream and scream, but without my heart I can't breath). I think of the woman in the book in To Kill a Mockingbird, who wanted to die without morphine addiction. Because it is all I can do to hold on from when I ask Linda for another pill and when it starts to work. Yesterday, due to a system failure, my lungs started to close off, an inflammation of some kind. We had an old inhaler of Linda’s and I was able to breathe again.

Why don’t I go to a hospital, where they would put a tube down my throat and keep me alive? Because in all honestly, I don’t know what to do. It turns out there is quite a difference between being terminal and saying, “Well, based on my rate of dropping, I don’t know how many months I have left.” A big difference between that and saying, as I said, when I was placed into bed, my body arranged, my bed inclined for breathing in hopes of limited recovery, “Tell Cheryl I’m sorry, tell them I’m sorry.” I just didn’t have the strength to go on anymore. I felt, that by dying, by giving up, I was failing all my friends and people who read here. You are the “them” I was talking about.

Cheryl and Linda had talked after they had gotten me back breathing. Linda was scared but she didn’t know if she, if they had done the right thing. Cheryl didn’t either. To see me every day in such pain, and to keep bringing me back, again and again. This time it wasn’t a bit of aid; if they had not acted in a steady and prolonged fashion to keep my lungs filling with oxygen, I would be dead; my face wouldn’t have been pale, it would have turned a peculiar shade of grey.

So, the exact particulars of a Do Not Resuscitate aren’t abstract anymore are they?

What is this? This is the picture of the world without Elizabeth McClung. Because that is all that will remain, an empty room.

I am not ready for this, dying, even the requiring, many times, close and continuous help, and that includes 24 hour assistance. I am not ready, but it is here.

It has been quite the week.

I want you to know that when Cheryl had to go on Sunday she left with every postcard request and every other postcard selected this week done. I wrote every single one. I selected every single one. Every package for this week was done. I have hoed to the end of the row; I kept the promises I made. I remember at one point, I think I was lying in Cheryl’s arms, and I tried to explain. “How can I not keep working?”

I think she said that I was literally killing myself. We were both crying

“In an age where everyone is trying to trick people to give their personal information.” I said, tears rolling down my cheeks, “they GAVE me their personal information. They took a chance. They trusted me. How can I break that trust?”

I mean I always knew that this wasn’t a ship I was getting off of. That when the time came for someone to make sure everyone was safe, or someone had to stay behind, to make sure that no one else would come to harm, that would be me. It is why I was born: the sacrifice. But if you call, across the distance, and I hear you, I will come, in some way, as much as I can I will be there for you. Cheryl had been worried earlier this week about my not being here when she arrived (yeah, sorry about the hiding of my physical, pain levels and mental state). I told her, “Say ‘I need you.’”

She did.

Say, “I need you to know you will be there until I come.”

She did.

I said, “Now, I’ll be here.” Everyone else first. That’s the rule. Only now I am locked in a room where I don’t have those choices anymore. The room is a metaphor for my body. I can only wait. In fact, I don’t know how many choices I have at all. And maybe, very soon, I will be in hospital for a longish time.

I promised Linda that I would go to bed early, I would sleep more, and we would leave this apartment. She can’t remember when I was last able to leave alone. We would go to the ocean side path, me wrapped in my blanket, and she could push and we would remember, what used to be. That this is where I trained for the commonwealth, me running with her keeping pace on her bike, the same trails where we jogged together after we moved back. We will go out, and remember.

Then we will come back, and soon, we will talk about how much more I can take. How much more I want to take. It will be a intimate but difficult conversation. She feels that she is keeping me here just for her. That to see me waking in agony, begging to be let go, to have them stop reviving me is her being selfish. I don’t know how to explain that the flashes of anger and frustration come from pain, or that I look in front of me for tomorrow, or the day after, or next week and I don’t see, I don't FEEL anything. If it were not for the promises made to S. and C. A. and a few others, I would not come back. But that is then, my fourth seizure, or when I can only drool and lose consciousness.

Now I look at my books and I don’t care anymore if they are sold, in fact, I don’t even really see them or anything as mine anymore. But still, I sit here, with every breath a struggle and my heart stopping and starting, and erratic close to a majority of the beats, and I go on. I have no future. I will take no vacation. I will have no family dinner. I will never have a job. I won’t take an education course. I don’t have the capacity anymore to write that book. What I know waking, and sleeping, and being listened to on the monitor so when I wake, I can be helped up, when I can’t even talk or use my arms.

And still I go on. Why?

I guess because right now, I feel that on some days, I feel I can make a difference. Many days, sometimes many days in a row, it seems that I can’t. It seems that nothing I do, the cards, or gifts, or little letters or the pictures for the posts or the posts on the blog make a difference. And then, I get frustrated and sad, and truthfully, I look forward now to the time when I am free. When my body will rest here, but I will be gone. I hope it is as peaceful as it sounds.

I am losing function so quickly now that it is hard to keep up. I am something like a mix of Flowers for Algernon and Johnny Got his Gun. I am a collection of what people read as horror films or stories. Take Stephen King: the book Thinner is about a person cursed to become thinner until they die. Yeah, that’s life, scary I guess but life. What about Misery? About a person who can’t use their thumbs, whose feet are smashed and they have to use a wheelchair, how they are chained inside. Yeah, my life and that are not very different are they? A “healthy man reduced to that by a maniac, what sickening horror.” So who was the maniac who did this to me? No one. But people find it terrifying all the same. I hope you don’t pull away because of your own fears, or your own sadness that I am, not in a theoretical way, but in a very quick and very literal way dying. In fact, I have already died a few times and come back. Because right now, you are the ones who are keeping me here.

You may not like it but I consider my desire which helps me continue, perhaps part obligation, perhaps part vanity but I want to live because you want me to live. And if means I am in constant pain, and with constant care, and unable to talk; or to lie in bed 50% of my time and 25% of the time be in so much agony I can’t function to the point of holding a toothbrush but I use the other 25% to communicate with you, in postcards, in emails, in blog posts, then that is enough. I live. Maybe I will find some other motivation. But for now, on the bad days, in those bad minutes and hours, it is you.

I am tentatively scheduled to go to Seattle in January. That is a long time away. People will leave to be with the ones they love. I will have to fight alone. I don’t know how to do it in this body.

Some people, many people, some readers think I will go to hell because I love Linda. I think that is supposed to scare me or something. If there is a hell and I am sent there, then I will be free at last, and I will find a way to protect those there. Lesbians in hell, my ass. I spend a great deal of time and was very fortunate to finally find this picture (which I had seen another person own). This is me. I have walked in the fire. Christians aren’t very good on their mythology, because there is something else about the Sacrifice, which is the Eternal Warrior. Hell doesn’t scare me. Pain and the looks on Linda and Cheryl’s face scare me. Feeling nothing, not even the desire to fight scares me. Being free again with a sword does not scare me. The people who think when I die I am not going to come back for them, should be scared of me.

Here is another picture I picked up, of the Valkyries (which was actually the name of my competition sword, Val). Swooping in the sky, weapon in hand. Not the worse life. Right now I live the life of Loki, chained, who has the acid dripping constantly on him, with his wife catching as much as she can in a cup, but when she empties the cup, it drips on him and his screams and writhing shake the world in earthquakes.

So that’s how things are. And if you know how to get from here to January, please help me. In fact, that’s what I want to say, help me. I think, even with a memory of just a day, even with this weak body, even with the pain, that this life is pretty good. I think there are good people out there. And I think I can remind a few people, maybe more than a few that change, and taking risks and caring are possible. They aren’t pain free, and sometimes you will be hurt, but they ARE possible.

When I go, I want to go fighting. I want my body to be so ravaged that they use it for the next 100 years as an example of what is possible. I never got to do the Ironman/Ironwoman Triathlon in Hawaii. This is my Ironman/Ironwoman. I knew a woman who did it three times, and she used to run mountains for just the running section as training. I like that image, not climbing, but RUNNING up mountains. Don’t let me just open my hand and let go.

Even as I type that I know soon I will not be able to type, and I can now use my hands because I have two heart meds and most of my pain meds in me. The pain, the exhaustion of the body system is beyond imagination. Think of a marathoner. Then think of them asked (forced!) to do ANOTHER marathon after the first one, without stopping. And see them staggering to the finish. Now, THAT person is responsible for every beat of my heart; if they lose consciousness, I lose consciousness, if they weave for a second or two, my heart stops for a second or two, if they don’t have perfect pressure every time, I can’t breathe.

That is where I am. It isn’t who I am. Who am I is going to be dead, soon. And I would like to know how to delay that, and I would like to fight. I just don’t know how.

I did ask Linda to find me a 10K in december....just in case.