Linda says I don’t know what it is like to watch the one you love die. To see her grow frail over the months, then weeks until you watch her struggle to breathe, to find her unconscious, to find her passed out.
To carry her to bed, to feel her heart grow weaker under your fingers, and I don’t. I am unconscious every time they put the ambi-bag on me, I am unconscious for most of it. I don’t know what it is like, I don’t know the stresses so bad that you want to scream if there was someone to scream to, that this is just so damn unfair. But also, I am alone, because I don’t talk to anyone who understands what it means to be treated as death, to wake knowing THIS day could be the last, and yet, to go on.All of my life anchors have been cut. Everyone a dozen to a couple dozen times a day thinks about the things that anchor their life in time and space; they should invite X over for thanksgiving; does Mom want everyone for Easter dinner? I should go visit my brother/sister this spring; I have been thinking about taking a vacation to X, wonder how much that costs. They have jobs, they have conversations, they know they will be seeing person R, T, and V today, they might go out on coffee break with person J, they are planning a dinner later this week with the Y family. They have a weekend off coming up, so they might just head up to ….. Our life is anchored by our sports, our hobbies, our jobs, our friends our interaction, our futures, our pasts. We do volleyball on Thursday, we plan to take a night to watch our favorite show. Except I have no anchors. I have no future, no one will make long term plans for me because every day I get up is a day I stop breathing. It is a day my heart stops beating. And one day they just won't start again.
So there is no next year for me, no autumn for me, no ability due to extreme and unstable condition to make nightly plans, or weekly ones, even from hour to hour. I have no job, or chance at one. The medical and care people have written me off; they pushed into the shell of my apartment where,
if it were not for Linda, I would see no one. I am to die.On Saturday, my doctor, after seeing me, said as close as doctors do that it was over. He is dragging on referring to the specialist because my only chance to avoid the wait, by which I will be dead, even to his view, is to go to the hospital. He still hasn’t made the referrals, but he is eager to find out when Dr. G. is on shift in emergency at the Hospital. He yells at Linda and Cheryl on ‘why didn’t they take Elizabeth to Seattle sooner! Then there could have been treatment.” It has been rattling around in my head… ‘then there COULD HAVE been treatment.’
Then he gave prescriptions for painkillers and the same man who won’t give me 10 ativan pills in case “I get addicted” has told Linda to go past the listed maximum dosage on painkillers by 25%, then has given her four months worth. My doctor has given me literally 50 times the amount of pills needed to kill myself by liver death from just ONE of my pain killers; the second I can overdose 14 times terminally and the third I just don’t know how many times, 20 times the amount needed to die. Don’t I get the morphine drip option?He is not treating my anemia, he is not collecting data, he is not doing anything. I have a broken toe, you can trace it and there is a section where it goes down for a chunk, but he won’t order an X-ray. I have fractures in my foot and he won’t order an X-ray because….I am going to die. My OTHER foot is twice the size and has bruising on every bone, we need to find out why, but no X-ray for that either. My T-cells, my white blood cells are off but he won’t order a full body X-ray for cancer. The blood tests he wanted last week, he doesn’t want anymore…..because I am going to die.
I am supposed to go away; no specialist will see me, or treat me because they KNOW I am terminal. Of every medical person, specialist, or long term care worker I have been with, all have told me in one way or another (like, “Well, you don’t have long to live!”) that I am going to die, and all the medical doctors, the specialist, the trained staff have withdrawn. Medicine is only exciting when you are hero, when you SAVE people.
Doing more and more tests on a person you know is dying in a weird and pretty horrific way isn’t FUN, isn’t what makes you feel good at the end of the day. So there are no follow up appointments, even when Linda drops by their office to demand one, because they said, “Come back if it gets worse.” Because I am supposed to go away to die. The one person who knew I was going to die but who rooted for me and helped me to LIVE anyway is now leaving their job.Today on the phone the occupational therapist from VIHA started to back out of coming at all if I was going to die. She said she would call to make an appointment in the first or second week of March. I said, “Fine, if I’m alive then.”
“You might NOT be alive?” Shock that I could waste her time by dying, “There is NOTHING in this file about dying.”
I told her how the manager didn’t WANT the medical details. Why then was I not in the palliative program? Somehow, it is now my fault for dying without filling out the forms first? I explained that when your heart specialist who is THE specialist has never treated anyone with just ONE of your symptoms, then they aren’t going to write saying when I am going to die. And when your neurologist can’t name one auto-immune disease that does ONE of the symptoms she found, she isn’t going to write when I am going to die. As for my GP, he won’t order an X-ray of a broken toe because ‘waste of time’ but he won’t put to paper when I am going to die. Don’t die strange or you get no help at all.
Well, the occupational therapist wasn’t so sure anymore if they were going to come over at all. I mean…if I was going to DIE. Because I must not need grab bars in order to take a shit UNTIL I die. Because I must not need to shower until I die. Palliative people are people too (get the t-shirt!).
Ten to fifty times a day I am told, corrected, reminded, explained on my death;
I ask if we can see a concert and am told ‘No sweetie….that’s in September, and you know….”, I ask Linda when she is seeing her family, “Well, you know, maybe this summer…..after…”. We talk about when to go to ER, we don’t exchange love letters but final drafts of wills, or power of medical understanding. I start giving things away so that Linda doesn’t have to sort them. Anything I want, it is too far away; I want to go to Luminara again, but am reminded ‘That’s in the summer….” and a pause which says, 'and you won’t make it that far.' 
We know, the doctor knows, I should have a pacemaker but no one will put one in a patient with as much anemia as me, a patient with conditions where they simply won’t come back. No use doing operation on a patient who simply stops breathing when they get tired.When I die Linda get my death money. So when I am told every day, by Linda, by everyone about how what does this or that matter because I am going to die, and I want to read a manga and I have none, I want to buy them. Why? Because buying at 4 for 3 on Amazon with free shipping is $25-30 and when I die (which is supposed to be any day) they get well, add some zeros to that back in death money. I am attracted to things I hunger for, for something little, something nice.
I try not to do this, not to put Linda in debt but it is hard, hard to save for the future, work for the future when EVERY hour of the day I am literally told that, it doesn’t matter because I am going to die. “I think we should think of upgrading the computer.” Response: “Well, better to keep it this way so you have it every day, we don’t know how much time you have.”And would I love to say, “Fuck that!”, yeah, I’d love to, except, I DO stop breathing every day, I can’t go exercising anymore like I used to, instead of exhausting and rebuilding I just exhaust and can’t get out of bed for several days. I don’t GET better anymore, not even in little things.
Do I think if I had my anemia treated, my hypothyroidism treated, a pacemaker put in….things might improve? Yeah, but I also think that would require a lot of people to give a damn and right now, no medical people do. Does that frustrate me and drive me and Linda and Cheryl to anger and to tears almost every day? YES. YES. We end up shouting at each other because we are so damn helpless and we KNOW what can be done. Why can’t I get an X-ray, why can’t I get a blood transfusion? Is this 1950’s? No, but I am ‘extremely low priority’ so people can deny me it seems. So I rest, and I sit. 
And then I try to forget and go on.So what do I do? That is what I am asking people and I don’t get answers.
I go into store, the regular stores and no one will ask me, will talk normally to me. No one asks, like last year, what the specialists found or when I am seeing a new specialist or compare thyroid problems with me. In the print shop, in the DVD store, everywhere no one asks, “How are you?” because they know. I don’t know how, because I haven’t told them, maybe just looking at me or the change so quickly from this summer/fall tells them. They know I am dying and they are pulling away. They know I am dying and they don’t want to talk about it. No one wants to talk about it. Except, that while I have EVERY minute of the day in pain, I still have to live them, even though life is a strange land,
still I want to try to LIVE them. I can’t quit, I won’t quit, I don’t quit. Sometimes, I get so tired I stop breathing…..sometimes I stop breathing for over 30 minutes….sometimes for 10……but I come back. I COME BACK.Is this going to be the heroic story of the crip who determines to live and does so by will power? That I am the warrior Amazon, who bursts forth to fight the illness?
NO! This is an enemy I never get to face, a defeat I experience on my own. Besides, If I had that will power, there would be specialists’ hair bursting into flame all over town
, or....other hobbies. But I do have to go on. I have to decide on a future, even when I have no memory of a past, no chance to revisit any place that Linda and I enjoyed together, none of that. My memories are gone, my future is left blank for me to die in, and I am shut off. But I am not dead. I AM NOT DEAD. And until I die, I live. Try to remember that. It seems something I need to remember as much as everyone else.Linda goes to support networks and they tell her she is more than a caregiver, and I agree. She is more, every day than simply a caregiver. I asked her, I asked other people, to tell me, what am I that is more than my disease?
When and what I eat, drink, shit, piss, sleep is determined by my disease. What am I beyond that? I do not pursue professional writing or paid writing through that is offered to me. I would rather be here, with you. I cannot be a sportswoman. What am I? That’s what I need to know.One thing I know is that I am an orphan. Sometimes you become an orphan at an early age and sometimes later. When your family watches you from the blog, sipping your life when it tastes good, skipping pages when it is bitter, like selective vampires but are unheard, unseen, un-family. I sit alone.
A person only ever has one biological family, and in the same way someone who was left on the steps wants to know, “Why? Why? What was wrong with ME, that they had to leave? Why?” So I want to know. And when the letter comes back saying in various terms that they don’t want contact, it hurts whether you are an adult reaching out from an childhood abandonment or an adult reaching out from an adult abandonment. My father is possibly in the early stages of Huntington’s Disease (sic). I can’t tell him because.....I can’t see him, I have tried to talk and email him. But he hasn't been here, though he lives so close. For the last two years he HASN'T here three times a week, or four, trying to bring me favorite foods or cheer me up. My brother, who I informed my father had a neuro-disease several months ago has not taken time off to come see him, is not interested, or not interested enough in seeing his father, or being there for him. There is something very important for everyone somewhere?My parents are now going to the very church, and the exact service Linda and I could go to (ground level). My father did leadership duties and I heard was very moving. I was told that my mother said it was like that was ‘where he was meant to be.’ My brother, is also a speaker in a Christian church. When I heard that phrase, I had to ask people to leave the room for up to an hour because it hurt that bad. The bible we all four believe in says, “This is true religion…” but most don’t know what James says after that, much less do it.
When Jesus announced that the world had changed he read that the promise from Isaiah was now fulfilled; some, a few around the world of all religions aim for that. The rest, I guess enjoy the warm glow of praise during Sunday Brunch.Better that my father be up there, speaking as if for God, having strangers feel something for HIM, than for he to be at the important parts of my life, and I put dying up there as pretty important in my life. I guess I waited a life to hear that my father, watching me with pride, with the same level of emotion that he can summon as the voice of God for strangers was ‘where he was meant to be.’
But it seems that much of my family are meant to be the façade of Christianity. They are not where God or the bible, or the church tradition actually tells them to be; but they are at the front of the church, where the adoring eyes are turned. They speak for God, don’t you know? Well, it is true that God used a donkey to preach the gospel, and a burning bush, and a rock, so there is no real limit on what might be used.Recently I had promises from two people, which would keep their word; for which was fulfilling their promise important? Only one, and that one isn’t blood, but they are the one I listen to daily, who I email, and send postcards.
Cheryl stood over me, at 7:25 am Monday morning and I told her, “You should have gone to bed!”
She almost shouted, “You and your (bloody) ‘no one is left behind’ it just gets into the blood!”
We sent out every postcard we prepared for sending, we finished every package and posted we prepared: 71 postcards and 11 packages. In the packages were the Shitajiki and other Binsen I had spent a total of five days getting ready: five days of shower, of transfers, of exhaustion, of determination. To go and get them laminated, to get them picked up, to have them matted, to have them framed, to find the right people for them, to write the card to go with the letter and for Linda and Cheryl carry me to these places and wrap and post them. In many cases the postcards I send are just pieces of paper, maybe a little pretty but in the end, just pieces of paper. But if there are 2 or 3 people in those 71 who need, really need that week the postcard, for whom it makes a difference, even a small one, one ripple of light in the darkness, then it is worth it, isn’t it? I am sending off my own Binsen collection now, instead of trying to find duplicates. Less for Linda to sort through, and time to find the right homes while there is time. Even in this, I am death, I am dying. It took everything we had, it was hard, it went on and on, and it was painful literally for at least two of us and yet, it was true religion what we did, I believe. And yet, there is always next week.I don’t know how to escape this but I am planning to live each minute until the minutes run out, and I won’t know that because I will gone. But don’t tell me when I am ready to go. If I am in agony, if I can’t sleep due to pain, if I am in pain every minute every day and I say, I LIVE, I will LOVE then I am not ready to go. And to those who believe in fate, so do I, and I was not created to die yet, my last job is not done. I don’t know it yet but I know suffering, and so I know that my job is not done. I cannot rest. I cannot stop. I cannot die because someone out there, maybe they don’t even know it yet, they will need me.
But make no mistake, I will die, and when I do, screw the idea of me sending messages back, there will be a new mission, new things that need being done (like making the afterlife more interesting). But until then I am lost.Lost. And not on some island. Lost because I have to go on when no one else wants to even look at me, when no one wants to hear what someone that close to what we fear so much has to say. I can break anything and I won’t be fixed, I am the dead girl wheeling.
And?
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