Part I: Wanting to be ‘not here’

There is a heat wave. With the heat wave I sit in a small box, and stare at the wall. This is where I do things. This is where I am. For all time, for as long as I can remember. The windows in my bedroom and study are insulated with foam and tiling and so I wake in darkness, I sleep my twice a day in darkness, darkness and my four feet by two feet is where I live. The computer and INDY sit by the air conditioner. Other people walk outside I see on the internet. I imagine things, I remember things, like jogging. But now I sit in my space between two walls.
There is a heat wave which stayed above 32 degrees C. for a week. It makes it too hot to sleep as I sleep on ice and wake in pain from my skin stretched, my veins bulging from being unable to sweat. I have no way to cool myself down. The apartment gets hotter every day. The workers do not touch me; there was one that used to touch me but they took her away. So since I sleep as Linda returns home and she sleeps as I awake, and often she is so hot, hotter than the heat wave, that a hug is an assault of pain. And yet my body yearns for touch. Yearns to see outside, to see a bird, to see anything but the wall.

In prison everyone gets a hour ‘in the yard’ – they get to see the sky and the sun and talk to people. Even people in high security lockdown get time ‘in the yard’. To not go outside or see outside or talk to anyone is a punishment, it is called Solitary. And even there the prisoner has the guard. “Sometimes all the prisoner has is the guard” says the ex-prisoner in Life. Meaning, humans are so desperate for someone that they will obey to get love or just talking: Stockholm syndrome, animals dying without companionship. Rabbits have plushies and are next to each other, cats get to come out or visit. They are not in pain for all memory, in each second. They are not alone.

When I go to see the cats, it is MY time to see the sky. The cats can see it every day.

I am in pain, yes, a pain which cannot be endured. A lot of people say, “It is amazing what people can endure.” Except they can’t. This is pain, emotional pain, or mental pain, or physical pain, or all three that wears and wears and grooves into you until you split in two. Just because they haven't split in two, or gone home and placed a rope in water and then tied the knots and cut the ends as the rope dried. Just because they haven't done this and cut the blood to the brain doesn't mean they are enduring each day, minute, second with equal amazement for those who go to shows, and BBQ's and visit gardens. They are not enduring, they are eroding silently.

People commit suicide. In concentration camps they used to walk into the wire. They walk into the wire in order to be shot and end it. they did that even though they got to see the sky, and they had an hour, near sunset when they could talk and look forward to maybe meat in the soup, it was, according to a Hungarian who survived, the best part of the day: to see a bird, to talk to friends, to move and jostle in line, to be human. They say that those who survived, who did not walk into the wire were those with hope. Religion for some, vengeance for some, family, whatever it took, you needed to get hope or you would die inside, and the body only followed. The pain I am in grinds me every day a little lower. I burn out, I go below burn out. When Linda burns out she is treated; there are units and counselors that deal with caregiver burn-out. She goes to a group on Monday for support. There are books and all of these say that the most important part is ‘your survival’. That there is no point having ‘two victims’. Am I a victim? Helpless?

Caregivers need respites, they are told to talk to people, to have people they can talk to about problems, about how they feel, frustrations, to go on vacations, to get away, to have friends they can be intimate in conversation with and intimate in touch with. Linda is told that I cannot give her everything she needs. And I can’t. I want to hold her and stroke her at the end of a day, and listen to her problems and take them on me. But I can’t. Yesterday, she is the one who feeds me. She is the one who helps me breathe; in last evening, in last night, in this morning.

But Linda cannot be or provide everything I need in the hour or two she sees me. I need people to talk to, people to be with, people to be intimate with, to have touch that does not hurt, to be cared for. I need a vacation, a respite from the pain, the physical pain, the emotional pain, and the mental. Books and groups talk to Linda about dealing about loss. Yet I deal with loss every week, alone. They want to help Linda, save Linda because she is one of the living. 'Survive' they tell her: Survive First.

For me, I have the wall and the pain, and the darkness. And I die inside a little, though I am not dead yet. No time in the yard, no sky, just pain, and nightmares, and pain. And burning out that like so much is not treated. Not treated because I will not live and they have nothing to offer in terms of hope, even for the pain.

I am a human being, equal to the person who lives here, who leaves here and the workers who come then go: to go and interact and talk to a dozen people or more a day. I just don’t live the life of other human beings, don’t experience what they experience. I have no TV. I have no radio. I am often ill, particularly during heat waves and only up a few hours. I try to catch up on emails. I try to keep my word and blog and yet, the wall asks me, “For what?” I tell it, “Because I keep my word.”

This is the time where people are busy with family, and work, or finding work, or vacations and I have the getting up, spending 50% of my day working full on to keep myself alive; to move my intestine, to monitor my liquids, to monitor my oxygen. Myself. And while I am not tilting at windmills or doing dangerous things, I am EFM, Elizabeth Fucking McClung, because I am tired of death hanging over my head. And so my fight is in the minutes, and going in and out of sanity, and the pain, which is double when it is hot, painful AND uncomfortable. I try to hold on to anything, anything at all that will get me another hour, another day. I am exhausted, I sleep, a day is done, the noise of construction wakes me. I have no human contact, and I am in pain, and discomfort, trying to do a bowel evacuation. I try for four hours. At the end, my hand cannot pick up a few hours. The evacuation failed. I will have to try again tomorrow. I sleep.

I get up and I write. I have no joy in the little things because I cannot feel them. I live in a sterile environment. I have no back yard. I have no outside at all. Just the wall. I cannot anticipate food as I do not get hungry. I cannot want a nice cold drink as I do not get thirsty. I cannot have a nice bath as I cannot feel the heat and would pass out. All my favorite foods of before are gone as I have no taste buds in my tongue, no feeling in my mouth. I know I have burnt myself while eating or drinking when the skin comes down off the roof of my mouth. Yesterday I sit with milk of magnesia in my mouth for 20 seconds while Linda finds water. It is the same as champagne. I snack on things easy to eat and swallow without breathing them in. I have a few taste buds in the back of my throat and they can taste sweet, so I like sweet things sometimes. I do not dream of food, or vacations, or anything. This is the fight I fight, to not die inside that day, to stay sane that day. To write. Without human or other contact. To continue.

A few days ago at the animal shelter I realized that in petting the cat, it was too noisy and I could not, anywhere on both hands, feel to know if the cat was purring. Purring is….was a pleasure for me, to know that I am liked, or they are pleased. I cannot feel the purr, I cannot feel the bite, I only see the blood.

For my doctorate I applied to nine countries, including Indonesia and South Africa because I was so tired of HERE. I wanted to be ‘not here’. I don’t know if you can understand that feeling.

I am tired of having the sign ‘dying’ hanging over me. I am tired of care workers who never touch me, never talk to me (it tells them not to in my care plan, decided by a nurse I did not see). I am tired of never seeing a bird, a squirrel, a tree, a bit of sky, a cloud, the moon. I am tired that I cannot smell, that I am always so cold it does hurt, so I can live, and in pain except when I am bloated and hot and in pain and I have to go in front of the air conditioner, or put on the vest of ice. Then I go back and sleep on ice. I want a poster on my wall. Or a picture. I am tired of never having a single day when I don’t have to monitor myself every 10 minutes I am alive. I am tired of being considered by the people in groups and organizations as not someone who is worth spending time on because I am not going to survive. I am triaged into the ‘dying’ camp and watch while Linda survives. What is her hope? What is mine?

Read on..