Second post

For the last maybe five-six years of his life, my father used a pair of pliers like these

to open bottles because his muscles were too weak for him to do it as I and probably also you do it. With the muscles in our fingers, palms, and wrists.

I have just opened one of the bottles of Coca Cola that my father asked me to bring him when I visited him on the night the hospital had called me and told me he was in the emergency ward. They asked if I could come and said that my father asked that I bring something. Yes, I said, what else apart from his computer does he need? The nurse said: He is pointing towards his mouth. Sir, do you want food? No? Dentures? Dentures! He wants his dentures. He also said to bring other things which I cannot presently remember.

He had pressed his emergency button, which was attached to a small chain and intended to hang around his neck in case of emergency. An ambulance had come and brought him to the hospital.

My girlfriend and I had visited him the night before, where he seemed very weak. As I remember it, he didn’t try to cough. But I remember being sad on the way home and sad at home.

When I reached his apartment to pick up stuff for him, I saw this message on his computer monitor, in an unsaved Word-document:

I cant cough up mucus and need a coughing machine now. The blue book is behind the radiator. Can you help me? I have als. First time. N18

It is his correspondance with the ambulance staff. I think “the blue book” is a binder with information about his care needs that he wanted them to bring. N18 is the neurology ward that he was under, but they didn’t take him there. They took him first to the emergency ward, sucked mucus out of his lungs and called me.

I saved the unsaved Word document on his computer. I went into the kitchen and took a small clear plastic bag from the drawer, drew it inside out, put my hand in it, poured the glass with his dentures in water out into the sink, picked up the dentures and turned the plastic bag outside in, tied a knot on it and continued collecting stuff for him. Each day the following week we revised a list I kept of things he needed me to do for him. Then things looked brighter. Then they turned worse.

The day after they had moved him to the lung ward. I visited him there every day and slept there the last 2 nights. His first neighbor, “the neanderthal” my father called him at first and then, after he saw his face, “Rasputin”, who kept him awake for the three first nights of his stay by MOANING and PUKING and GURGLING. The man had a big beard, spoke no words, was an uncooperative nuisance to the nurses and an exhausting hell to my father. One day when my girlfriend and I visited him, my father had prepared a small explanatory text about his neighbour, which the synthetic voice in the tablet computer he used for communication read aloud, I won’t try to find it right now, but it contained stuff like:

He is very angry. Sometimes I wonder why the nurses don’t slap him in the face.

I will go further with these subjects later.

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First post

This is a blog about my father, who died in bed at the hospital the night before wednesday. 96 hours ago.

He was in hospital for two weeks, where they treated his pneumonia. He died after having lived a little over 10 years with Amyotrophic Lateral Sclerosis, a neural disease that attacks the motor neurons one uses to control voluntary muscle movement. His condition was poor in the end, he was in an electric wheelchair, had lost the ability to speak and had difficulty eating. Some days it would take him six hours to get out of bed. I have never seen it, but he has told me about it. He kept a journal/log for at least the last 8 years of his life, the last parts of which he used the computer I am presently writing on to write. I haven’t read it yet, but am obviously one of it’s two originally intended readers. I think he knew I would write something about him. Maybe he even imagined it to become great.

I have been expecting this change in my life to happen for many years, and for the last year I have thought of using the internet to write about it anonymously.

I hope I will succeed in this, and that my friends, should they stumble upon this blog by chance or mistake, would help me remain in a position to express myself anonymously (by not telling other friends).

I study psychology at university and am writing a novel which I have been writing for more than 4 years. I need to finish it at some point, but need to take a few months off for it.

I am 27 years old. I have no sisters or brothers and was my father’s only family. My mother lives, but they were divorced when I was 10.

I have chosen to write in English although I do not master it to perfection.

Please comment on my English, as I wish to correct my mistakes (language, spelling, punctuation).

Please comment on whatever you feel like.

I imagine having a son. A daydream. He asks for my advice on the matter of premature ejaculation, to which I reply: This is not something I discussed with my father and therefore I have no safe advice to lean on in replying to you, but I think it has something to do with breathing. Breathe properly.

My father’s heart pounded on for what I thought was several minutes after he drew what became his last breath. I will ask N about it, my friend the doctor.

My girlfriend is with some of our friends, drinking and talking. I wanted to stay in and write about my father. I have tried and failed quite a few times over the years, with different reasons for failing. Maybe the feelings involved were too big to handle properly in text. Love that word, text. From a distance.

I had planned to spend these last few weeks working on a new version of a novel I have been working on for over 4 years now. Then my father was put in hospital, and I spent a lot of time at the hospital and wrote about a few of the things that went on there on my phone (a Nokia E72 which he gave me and for which I am grateful). I will collect and edit and translate them into English and post some things from that here.

The novel reached 500.000 characters last spring, topped 600.000 during summer and I was proud. I think I can use maybe half of that amount and have laid out a new beginning and new structure for the whole thing. The “story” was too boring, said my editor, with other words, but she was right. I used to write poetry, but haven’t for a few years. I lost interest. I think she liked my poetry. But it doesn’t sell. And my mother tongue is too small to maintain a healthy literary scene. I hope this attempt to escape that prison will prove fruitful. Writing should be fun, or at least interesting. And my right wrist hurts from playing Quake. Regressional gaming.

Some of the next posts will be about his stay at the hospital and his death. I also have one lined up about his seeing auras, how vision works (from my basic perspective) and a poster with 1025 colours which hangs on the wall above my desk, and one on the way about picking a place to put him in.

If the 1025 colours were sounds and were arranged in a more logical manner than the colours on the poster, I think they would sound like this:

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