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.